tag:theconversation.com,2011:/uk/topics/endometriosis-2405/articlesEndometriosis – The Conversation2024-02-26T01:47:21Ztag:theconversation.com,2011:article/2242372024-02-26T01:47:21Z2024-02-26T01:47:21ZWhat is Ryeqo, the recently approved medicine for endometriosis?<figure><img src="https://images.theconversation.com/files/577738/original/file-20240225-24-jk5b3s.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5991%2C3997&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.pexels.com/photo/woman-suffering-from-a-stomach-pain-5938369/">Pexels/Sora Shimazaki</a></span></figcaption></figure><p>For women diagnosed with endometriosis it is often a long sentence of chronic pain and cramping that <a href="https://www.instagram.com/p/CP2i5xKl9tS/">impacts their daily life</a>. It is a condition that is both difficult to diagnose and treat, with many women needing either <a href="https://www.thewomens.org.au/health-information/periods/endometriosis/">surgery or regular medication</a>.</p>
<p>A medicine called Ryeqo has just been approved for marketing specifically for endometriosis, although it was already available in Australia to treat a different condition.</p>
<p>Women who want the drug will need to consult their local doctor and, as it is not yet on the Pharmaceutical Benefits Scheme, they will need to pay the full cost of the script.</p>
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Read more:
<a href="https://theconversation.com/people-with-endometriosis-and-pcos-wait-years-for-a-diagnosis-attitudes-to-womens-pain-may-be-to-blame-179500">People with endometriosis and PCOS wait years for a diagnosis – attitudes to women’s pain may be to blame</a>
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<h2>What does Ryeqo do?</h2>
<p>Endometriosis <a href="https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/how-common-is-endometriosis">affects 14% of women of reproductive age</a>. While we don’t have a full understanding of the cause, the evidence suggests it’s due to body tissue that is similar to the lining of the uterus (called the endometrium) growing outside the uterus. This causes pain and inflammation, which reduces quality of life and can also affect fertility.</p>
<p>Ryeqo is a tablet containing three different active ingredients: relugolix, estradiol and norethisterone. </p>
<p>Relugolix is a drug that blocks a particular peptide from releasing other hormones. It is also used in the <a href="https://www.mayoclinic.org/drugs-supplements/relugolix-oral-route/description/drg-20506394">treatment of prostate cancer</a>. Estradiol is a naturally occurring oestrogen hormone in women that helps regulate the menstrual cycle and is used in <a href="https://www.menopause.org.au/health-info/fact-sheets/what-is-menopausal-hormone-therapy-mht-and-is-it-safe">menopausal hormone therapy</a>. Norethisterone is a synthetic hormone commonly used in birth control medications and to <a href="https://www.netdoctor.co.uk/medicines/a8713/norethisterone/">delay menstruation and help with heavy menstrual bleeding</a>.</p>
<p>All three components work together to regulate the levels of oestrogen and progesterone in the body that contribute to endometriosis, alleviating its symptoms. </p>
<p>Relugolix reduces the overall levels of oestrogen and progesterone in the body. The estradiol compensates for the loss of oestrogen because low oestrogen levels can cause hot flushes (also called hot flashes) and bone density loss. And norethisterone blocks the effects of estradiol on the uterus (where too much tissue growth is unwanted).</p>
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<strong>
Read more:
<a href="https://theconversation.com/a-new-government-inquiry-will-examine-womens-pain-and-treatment-how-and-why-is-it-different-221747">A new government inquiry will examine women's pain and treatment. How and why is it different?</a>
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<h2>Is it really new?</h2>
<p>The maker of Ryeqo claims it is the <a href="https://www.gedeonrichter.com/au/-/media/sites/au/documents/media-release-c_ryeqo-tga-approval_gedeon-richter-australia_final.pdf?rev=1cc37d3726f84e9ca71d4c094c1e3dd6">first new drug for endometriosis in Australia in 13 years</a>.</p>
<p>But individually, all three active ingredients in Ryeqo have been in use since <a href="https://link.springer.com/article/10.1007/s40265-019-01105-0#:%7E:text=Relugolix%20received%20its%20first%20global,with%20uterine%20fibroids%20in%20Japan.">2019</a> or earlier. </p>
<p>Ryeqo has been available in Australia <a href="https://www.tga.gov.au/resources/artg/375414">since 2022</a>, but until now was not specifically indicated for endometriosis. It was originally approved for the treatment of <a href="https://www.ema.europa.eu/en/medicines/human/EPAR/ryeqo">uterine fibroids</a>, which share some <a href="https://www.medicalnewstoday.com/articles/fibroid-vs-endometriosis#similarities">common symptoms</a> with endometriosis and have related causes.</p>
<p>In addition to Ryeqo, current medical guidance lists other drugs that are suitable for endometriosis and some reformulations of these have also only been recently approved. </p>
<p>The oral medicine <a href="https://www.tga.gov.au/resources/artg/336684">Dienogest</a> was approved in 2021, and there have been a number of injectable drugs for endometriosis recently approved, such as <a href="https://www.tga.gov.au/resources/artg/401897">Sayana Press</a> which was approved in a smaller dose form for self-injection in 2023. </p>
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<a href="https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="hands taking pill out of contraceptive blister pack" src="https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/577780/original/file-20240225-28-5t517.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">You can’t take the contraceptive pill with Ryeqo but the endometriosis drug could replace it.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/contraceptive-pill-174193232">Shutterstock</a></span>
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<h2>How to take it and what not to do</h2>
<p>Ryeqo is a once-a-day tablet. You can take it with, or without food, but it should be taken about the same time each day.</p>
<p>It is recommended you start taking Ryeqo within the first five days after the start of your next period. If you start at another time during your period, you may experience initial irregular or heavier bleeding.</p>
<p>Because it contains both synthetic and natural hormones, you can’t use the contraceptive pill and Ryeqo together. However, because Ryeqo does contain norethisterone it can be used as your contraception, although <a href="https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent=&id=CP-2023-CMI-01327-1&d=20240224172310101">it will take at least one month of use to be effective</a>. So, if you are on Ryeqo, you should use a non-hormonal contraceptive – such as condoms – for a month when starting the medicine.</p>
<p>Ryeqo may be incompatible with other medicines. It might not be suitable for you if you take medicines for epilepsy, HIV and AIDS, hepatitis C, fungal or bacterial infections, high blood pressure, irregular heartbeat, angina (chest pain), or organ rejection. You should also not take Ryeqo if you have a liver tumour or liver disease.</p>
<p>The possible <a href="https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAgent&id=CP-2022-PI-01955-1">side effects of Ryeqo</a> are similar to those of oral contraceptives. Blood clots are a risk with any medicine that contains an oestrogen or a progestogen, which Ryeqo does. Other potential side effects include bone loss, a reduction in menstrual blood loss or loss of your period.</p>
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Read more:
<a href="https://theconversation.com/whats-a-tens-machine-can-it-help-my-period-pain-or-endometriosis-201389">What's a TENS machine? Can it help my period pain or endometriosis?</a>
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<h2>It’s costly for now</h2>
<p>Ryeqo can now be prescribed in Australia, so you should discuss whether Ryeqo is right for you with the doctor you usually consult for your endometriosis. </p>
<p>While the maker has made a submission to the Pharmaceutical Benefits Advisory Committee, it is not yet subsidised by the Australian government. This means that rather than paying the <a href="https://www.pbs.gov.au/info/healthpro/explanatory-notes/front/fee">normal PBS price of up to A$31.60</a>, it has been reported it may <a href="https://www.9news.com.au/national/it-never-stops-new-drug-approved-to-treat-endometriosis-after-decade-of-pain/b51f0e92-6dd8-4812-800a-eadac0d55218">cost as much as $135</a> for a one-month supply. The committee will make a decision on whether to subsidise Ryeqo at its meeting next month.</p>
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<p><em>Correction: this article has been updated to clarify the recent approval of specific formulations of drugs for endometriosis.</em></p><img src="https://counter.theconversation.com/content/224237/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nial Wheate in the past has received funding from the ACT Cancer Council, Tenovus Scotland, Medical Research Scotland, Scottish Crucible, and the Scottish Universities Life Sciences Alliance. He is a Fellow of the Royal Australian Chemical Institute, a member of the Australasian Pharmaceutical Science Association, and a member of the Australian Institute of Company Directors. Nial is the chief scientific officer of Vaihea Skincare LLC, a director of SetDose Pty Ltd a medical device company, and a Standards Australia panel member for sunscreen agents. Nial regularly consults to industry on issues to do with medicine risk assessments, manufacturing, design, and testing.</span></em></p><p class="fine-print"><em><span>Jasmine Lee does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A drug newly approved by the Therapeutic Goods Administration for endometriosis is available in Australia.Nial Wheate, Associate Professor of the School of Pharmacy, University of SydneyJasmine Lee, Pharmacist and PhD Candidate, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2217472024-01-31T19:08:10Z2024-01-31T19:08:10ZA new government inquiry will examine women’s pain and treatment. How and why is it different?<figure><img src="https://images.theconversation.com/files/572314/original/file-20240131-25-o9jwvw.jpg?ixlib=rb-1.1.0&rect=25%2C12%2C4228%2C2812&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/older-woman-massaging-tensed-rubbing-muscles-2365171835">Shutterstock</a></span></figcaption></figure><p>The Victorian government has announced an <a href="https://www.health.vic.gov.au/inquiry-into-womens-pain">inquiry</a> into women’s pain. Given women are disproportionately affected by pain, such a thorough investigation is long overdue. </p>
<p>The inquiry, the first of its kind in Australia and the first we’re aware of internationally, is expected to take a year. It aims to improve care and services for Victorian girls and women experiencing pain in the future.</p>
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Read more:
<a href="https://theconversation.com/there-is-overwhelming-gender-bias-in-the-ndis-and-the-review-doesnt-address-it-220042">There is overwhelming gender bias in the NDIS – and the review doesn't address it</a>
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<h2>The gender pain gap</h2>
<p>Globally, more women report chronic pain than men do. A survey of over 1,750 Victorian women found 40% are living with chronic <a href="https://www.premier.vic.gov.au/gender-pain-gap-revealed-and-women-arent-surprised">pain</a>. </p>
<p>Approximately <a href="https://pubmed.ncbi.nlm.nih.gov/36038207/#:%7E:text=About%20half%20of%20chronic%20pain,a%20higher%20prevalence%20in%20men.">half of chronic pain conditions</a> have a higher prevalence in women compared to men, including <a href="https://academic.oup.com/painmedicine/article/22/2/382/5961453">low back pain</a> and <a href="https://www.mdpi.com/2077-0383/10/14/3178">osteoarthritis</a>. And female-specific pain conditions, such as endometriosis, are much more common than male-specific pain conditions such as <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3894747/">chronic prostatitis/chronic pelvic pain syndrome</a>. </p>
<p>These statistics are seen <a href="https://www.abs.gov.au/statistics/health/health-conditions-and-risks/stressors-and-bodily-pain/latest-release">across the lifespan</a>, with higher rates of chronic pain being reported in females <a href="https://www.sciencedirect.com/science/article/pii/S0304395911004751?casa_token=fDkFvlrL930AAAAA:SonUMuMgqohViJ2Ok9gGQ7K4G0hChxZYolroR7t5LVSd_uzMnSe_2EBZ4b8blh3GscewZ1bI7Ac">as young as two years old</a>. This discrepancy <a href="https://www.aihw.gov.au/reports/chronic-disease/chronic-pain-in-australia/summary">increases with age</a>, with 28% of Australian women aged over 85 experiencing chronic pain compared to 18% of men. </p>
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Read more:
<a href="https://theconversation.com/people-with-endometriosis-and-pcos-wait-years-for-a-diagnosis-attitudes-to-womens-pain-may-be-to-blame-179500">People with endometriosis and PCOS wait years for a diagnosis – attitudes to women’s pain may be to blame</a>
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<h2>It feels worse</h2>
<p>Women also experience pain differently to men. There is some evidence to suggest that when diagnosed with the same condition, women are more likely to report <a href="https://www.sciencedirect.com/science/article/pii/S1526590011008728">higher pain scores than men</a>. </p>
<p>Similarly, there is some evidence to suggest women are also more likely to report higher pain scores during experimental trials where the same painful pressure stimulus is applied to <a href="https://www.sciencedirect.com/science/article/pii/S0304395911007019?casa_token=ZK8PjH4pXUYAAAAA:UI8K8sKlrWM3OCC7qBucplrA-mct4EU5NZUpQsLQ6WooNWlfxC6MCtTdTKmtyQYjh9kcE08okiQ">both women and men</a>. </p>
<p>Pain is also more burdensome for women. Depression is twice as prevalent in women with chronic pain <a href="https://www.sciencedirect.com/science/article/pii/S0033318207710022">than men with chronic pain</a>. Women are also more likely to report <a href="https://journals.lww.com/spinejournal/FullText/2007/05200/Sex_Differences_in_Consequences_of_Musculoskeletal.17.aspx?casa_token=mgToFxqQuiwAAAAA:Plx0N_ILNIVK_D8NDODFYaYi_HDxbZN2enulMAS0VmIwyCNHd3c62lhEDi_AYDw8Dhz7uX2dPIZ3HoqwnuWoanLH">more health care use</a> and be <a href="https://www.aihw.gov.au/getmedia/10434b6f-2147-46ab-b654-a90f05592d35/aihw-phe-267.pdf.aspx">hospitalised due to their pain</a> than men. </p>
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<a href="https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="woman lies in bed in pain" src="https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/572316/original/file-20240131-16-pjgp8g.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Women seem to feel pain more acutely and often feel ignored by doctors.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-woman-having-stomach-ache-on-1780468907">Shutterstock</a></span>
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Read more:
<a href="https://theconversation.com/whats-a-tens-machine-can-it-help-my-period-pain-or-endometriosis-201389">What's a TENS machine? Can it help my period pain or endometriosis?</a>
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<h2>Medical misogyny</h2>
<p>Women in pain are viewed and treated differently to men. Women are more likely to be told their pain is psychological and dismissed as <a href="https://www.tandfonline.com/doi/full/10.1080/03630242.2017.1306606?casa_token=twusk7mU5EcAAAAA%3AG--5Y_nl_bDqsR9k4w-fF8sEMGuGiMlrifAGQKC_j6swOBhYdzzwXeXiNUoR4C9vM2CydSppwLN2">not being real or “all in their head”</a>.</p>
<p>Hollywood actor <a href="https://www.independent.co.uk/life-style/health-and-families/selma-blair-ms-misdiagnosis-symptoms-b2454317.html">Selma Blair</a> recently shared her experience of having her symptoms repeatedly dismissed by doctors and put down to “menstrual issues”, before being diagnosed with multiple sclerosis in 2018. </p>
<p>It’s an experience familiar to many women in Australia, where medical misogyny still runs deep. <a href="https://journals.sagepub.com/doi/abs/10.1177/09593535221083846?journalCode=fapa&">Our research</a> has repeatedly shown Australian women with pelvic pain are similarly dismissed, leading to lengthy diagnostic delays and serious impacts on their quality of life. </p>
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<h2>Misogyny exists in research too</h2>
<p>Historically, misogyny has also run deep in medical research, including pain research. Women have been viewed as smaller bodied men with different reproductive <a href="https://www.sciencedirect.com/science/article/abs/pii/S156925580334024X">functions</a>. As a result, most pre-clinical pain research has used male rodents as the default research <a href="https://journals.lww.com/pain/fulltext/2005/09000/the_case_for_the_inclusion_of_female_subjects_in.1.aspx?casa_token=BcqYDDSRxo4AAAAA:nLvLqpNfuwSm6N4n1kn-Wcj4n9HW__ISaNz57PYp0zX8Nfu9a5cWZdJkjCXVXeU_HKjraI5NbND-rqqzanYuF864">subject</a>. Some researchers say the menstrual cycle in female rodents adds additional variability and therefore uncertainty to experiments. And while variability due to the menstrual cycle may be true, it may be no greater than male-specific sources of variability (such as within-cage aggression and dominance) that can also <a href="https://www.nature.com/articles/s41583-020-0310-6">influence research findings</a>. </p>
<p>The exclusion of female subjects in pre-clinical studies has hindered our understanding of sex differences in pain and of response to treatment. Only recently have we begun to understand various genetic, neurochemical, and neuroimmune factors contribute to sex differences in <a href="https://www.annualreviews.org/doi/full/10.1146/annurev-neuro-092820-105941">pain prevalence and sensitivity</a>. And sex differences exist in pain processing itself. For instance, in the spinal cord, male and female rodents process <a href="https://theconversation.com/pain-really-is-in-the-mind-but-not-in-the-way-you-think-1151">potentially painful stimuli</a> through <a href="https://www.nature.com/articles/nn.4053">entirely different immune cells</a>. </p>
<p>These differences have relevance for how pain should be treated in women, yet many of the existing pharmacological treatments for pain, including opioids, are largely or solely based upon research completed on male rodents. </p>
<p>When women seek care, their pain is also treated differently. Studies show women receive <a href="https://link.springer.com/article/10.1007/s11916-023-01135-0#ref-CR6">less pain medication after surgery compared to men</a>. In fact, one study found while men were prescribed opioids after joint surgery, women were <a href="https://link.springer.com/article/10.1007/s11916-023-01135-0#ref-CR17">more likely to be prescribed antidepressants</a>. In another study, women were more likely to receive sedatives for pain relief following surgery, while men were <a href="https://link.springer.com/content/pdf/10.1007/BF00289259.pdf">more likely to receive pain medication</a>. </p>
<p>So, women are disproportionately affected by pain in terms of how common it is and sensitivity, but also in how their pain is viewed, treated, and even researched. Women continue to be excluded, dismissed, and receive sub-optimal care, and the recently announced inquiry aims to improve this. </p>
<h2>What will the inquiry involve?</h2>
<p>Consumers, health-care professionals and health-care organisations will be invited to share their experiences of treatment services for women’s pain in Victoria as part of the year-long inquiry. These experiences will be used to describe the current service delivery system available to Victorian women with pain, and to plan more appropriate services to be delivered in the future. </p>
<p>Inquiry <a href="https://www.health.vic.gov.au/public-health/inquiry-into-womens-pain-submissions">submissions</a> are now open until March 12 2024. If you are a Victorian woman living with pain, or provide care to Victorian women with pain, we encourage you to submit.</p>
<p>The state has an excellent track record of improving women’s health in many areas, including <a href="https://www.premier.vic.gov.au/groundbreaking-clinic-improving-womens-heart-health">heart</a>, <a href="https://www.health.vic.gov.au/publications/victorian-womens-sexual-and-reproductive-health-plan-2022-30">sexual, and reproductive health</a>, but clearly, we have a way to go with women’s pain. We wait with bated breath to see the results of this much-needed investigation, and encourage other states and territories to take note of the findings.</p><img src="https://counter.theconversation.com/content/221747/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jane Chalmers receives funding from The Hospital Research Foundation. </span></em></p><p class="fine-print"><em><span>Amelia Mardon does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Women are disproportionately affected by pain in terms of how common it is and sensitivity, but also in how their pain is viewed, treated, and even researched.Jane Chalmers, Senior Lecturer in Pain Sciences, University of South AustraliaAmelia Mardon, PhD Candidate, University of South AustraliaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2201792024-01-30T16:16:38Z2024-01-30T16:16:38ZEndometriosis takes almost a decade to be diagnosed in the UK — our research has revealed some of the reasons why<figure><img src="https://images.theconversation.com/files/572134/original/file-20240130-21-1iifrs.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5472%2C3637&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Endometriosis can cause severe chronic pain.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-asian-woman-relieves-stomach-pain-2199693477">Drazen Zigic/ Shutterstock</a></span></figcaption></figure><p>Around <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Annual%20Report%202018.pdf">one in ten women</a> and people with uteruses in the UK have endometriosis. This disease causes tissue similar to the womb’s lining to grow in other places – such as the ovaries and fallopian tubes. This can cause chronic pain, difficulty getting pregnant, organ damage and fatigue.</p>
<p>Yet despite how common endometriosis is, people who have the disease still wait around <a href="https://www.annalsofhealthresearch.com/index.php/ahr/article/view/111">eight years on average</a> to be diagnosed.</p>
<p>There are numerous, <a href="https://journals.sagepub.com/doi/full/10.1177/0959353519826170">complex reasons</a> for this delay. A <a href="https://www.sciencedirect.com/science/article/abs/pii/S0002937819303850?via%3Dihub">lack of knowledge</a> about endometriosis by both those affected and healthcare professionals has been suggested, meaning those with symptoms may not know to ask for help – and those that do may receive poor quality care. </p>
<p>We wanted to better understand what barriers people continue to face when it comes to endometriosis care. We used interviews and an open-ended online survey to learn about these experiences. </p>
<p>A total of 33 women completed the online survey – 21 of whom were diagnosed with endometriosis, and 12 who were seeking a diagnosis. We also conducted in-depth interviews with four of the women who have been diagnosed with endometriosis.</p>
<p>Our research identified the <a href="https://www.tandfonline.com/doi/full/10.1080/10810730.2023.2299003">four main challenges</a> people faced in accessing endometriosis care: </p>
<h2>1. Systemic sexism</h2>
<p>Our participants described a health system tarred by systemic sexism. Experiences were characterised by doctors and nurses not believing them or thinking they were exaggerating. </p>
<p>One participant said: “I have been told that my pain was in my head or that I must have a low pain threshold.” </p>
<p>This led the participants to feel ashamed, embarrassed and powerless – making them less likely to seek out help in the future.</p>
<p>Many also reported feeling their concerns were dismissed as “women’s issues” that shouldn’t be discussed, with one interviewee revealing: </p>
<blockquote>
<p>I have no problem talking about menstruation and periods – but it is people’s and society’s reactions to the topic that makes me feel as though I cannot say anything. Almost as if it is a women’s issue that you must deal with quietly and alone. </p>
</blockquote>
<p>This also extended to their workplace, where some reported not being supported by management even after being diagnosed – and feeling pressure to return to work early after surgery.</p>
<h2>2. Long waiting lists</h2>
<p>Long waiting lists prevented participants from seeking help. And, many felt resigned to pay for private healthcare if they could afford it. Those who couldn’t were left “in the hands of the NHS”.</p>
<p>Nine participants reported paying for private tests or appointments. These participants saw this as the only way to get a diagnosis, with one interviewee revealing:</p>
<blockquote>
<p>When I raised endometriosis as a potential issue I was given the reply ‘I don’t know anything about that condition’ from the GP. Non-specialist gynaecologists also seem to misunderstand the condition and it was only when I recently went for a private consultation that I was believed and was told it’s highly likely that I have the condition.</p>
</blockquote>
<p>Others chose private care because they felt waiting any longer for NHS care would have had a serious impact on their mental health. </p>
<h2>3. Lack of treatment options</h2>
<p>Participants overwhelmingly reported they felt helpless about their treatment options – even after being diagnosed. As one interviewee put it:</p>
<blockquote>
<p>I feel helpless when I try to manage my pain. I feel overwhelmed and I can sit there for a while and just not know what to do. I feel like I have given up trying to manage my pain. I’ve noticed it has become part of my life and I am used to it, to the point where I don’t notice the mild discomfort anymore. I don’t think I even realised that a healthy person doesn’t have this constant pain.</p>
</blockquote>
<p>Others reported this helplessness stemmed from their experiences with healthcare providers. One participant even said her doctor made her feel that “surgery was pointless” – revealing that when she was offered surgery, she was told it would have little effect in managing her pain.</p>
<figure class="align-center ">
<img alt="A woman in pain speaks with a female doctor." src="https://images.theconversation.com/files/572137/original/file-20240130-29-84joju.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/572137/original/file-20240130-29-84joju.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/572137/original/file-20240130-29-84joju.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/572137/original/file-20240130-29-84joju.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/572137/original/file-20240130-29-84joju.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/572137/original/file-20240130-29-84joju.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/572137/original/file-20240130-29-84joju.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some of the interviewees spoke of difficulty in getting help from their doctors.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/female-patient-holding-her-abdomen-pain-2256679083">Drazen Zigic/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Another participant stated that the “general ‘trial and error’ approach to my treatment made me feel mistrusting of the diagnosis process and subsequent treatment”.</p>
<h2>4. Self doubt and fatigue</h2>
<p>Having symptoms repeatedly dismissed and not believed by doctors led women to mistrust their own experience. They worried that even if they tried getting help, they wouldn’t receive the support they wanted anyway. Women reported intense and overwhelming fear and helplessness, feeling drained from being forced to advocate for themselves.</p>
<p>One woman told us, “I have totally lost faith in my own thoughts and feelings and feel genuinely terrified to try and speak to more doctors.” Another said, “I don’t have it in me to fight and advocate for myself anymore as it’s just so exhausting.” </p>
<h2>Need for change</h2>
<p>Having strong, trusting relationships with doctors is central to having a <a href="https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-019-0774-6">positive experience</a> in managing endometriosis and getting the right healthcare. When concerns are repeatedly dismissed, it can cause people with endometriosis to <a href="https://www.tandfonline.com/doi/full/10.1080/10410236.2022.2048468">avoid engaging</a> with the healthcare system altogether. Our research shows that these issues still remain problems today, contributing to delayed diagnosis and poor management of the disease. </p>
<p>Our findings suggest that we need cultural change. We need to de-stigmatise gynaecological health and change attitudes towards pain so that it’s no longer dismissed or normalised. </p>
<p>We also need better awareness of endometriosis and training for doctors and nurses so that diagnoses and treatment happen more quickly.</p>
<p>But until that systemic change happens, many people with endometriosis may still face obstacles in accessing care. If you suspect you have endometriosis, we advise keeping a “pain diary” – documenting when, where and how often your pain is happening so that you can provide your doctor with more detail on your experiences.</p>
<p>If you don’t feel like you’re being taken seriously, ask for a second opinion. There’s also lots of support available from national charities such as <a href="https://www.endometriosis-uk.org/">Endometriosis UK</a>, which can provide information on the condition, and also offer support groups and helplines for those affected.</p><img src="https://counter.theconversation.com/content/220179/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Endometriosis affects 10% of women in the UK.Jasmine Hearn, Senior Lecturer in Psychology, Manchester Metropolitan UniversityStella Bullo, Senior Lecturer in Linguistics, Manchester Metropolitan UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2178812023-12-04T19:17:08Z2023-12-04T19:17:08ZEndometriosis: It’s time to change the pattern of pain, stigma and barriers to diagnosis and treatment<figure><img src="https://images.theconversation.com/files/563001/original/file-20231201-29-ehllq0.jpg?ixlib=rb-1.1.0&rect=135%2C45%2C6527%2C4366&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Government of Canada recently announced more than $1.6 million for endometriosis patients and research, the largest single investment in endometriosis care in Canada for the last 20 years.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/endometriosis-its-time-to-change-the-pattern-of-pain-stigma-and-barriers-to-diagnosis-and-treatment" width="100%" height="400"></iframe>
<p><a href="https://www.who.int/news-room/fact-sheets/detail/endometriosis">Endometriosis</a> is a debilitating disease that <a href="https://doi.org/10.1016/j.jogc.2020.05.009">affects an estimated one million Canadians</a>. It involves the overgrowth of tissue similar to endometrium tissue (the tissue that lines the uterus). </p>
<p>For people with endometriosis, this tissue grows excessively, both inside and outside of the uterus, which can cause pelvic pain, extreme menstrual cramping and non-menstrual cramping, as well as chronic fatigue and reduced fertility. </p>
<p>The Government of Canada <a href="https://www.canada.ca/en/health-canada/news/2023/09/government-of-canada-strengthens-access-to-sexual-and-reproductive-services-for-people-living-with-endometriosis.html">recently announced more than $1.6 million</a> for endometriosis patients and research, the largest single investment in endometriosis care in Canada for the last 20 years. This much-needed, long-awaited funding will go far to address the many challenges that endometriosis patients face, including struggling to get a diagnosis in the first place, dismissal of their symptoms, related stigma, and ineffective treatments.</p>
<p>Left untreated, endometriosis can affect the central nervous system, leaving patients at heightened risk of abnormal pain and chronic pain presentation, which too often negatively impacts their overall quality of life.</p>
<p>In fact, endometriosis patients often experience a reduced ability to participate in the activities of everyday life. Yolanda Kirkham, an obstetrician-gynecologist (OBGYN) from the University of Toronto, <a href="https://obgyn.utoronto.ca/news/invisible-disease-endometriosis">has reported that</a> girls and young women are unable to attend school for a few days each month due to their symptoms, while others with the disease frequently miss work due to nausea and vomiting. </p>
<figure class="align-center ">
<img alt="A doctor and a young woman patient in a clinic" src="https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/563224/original/file-20231204-18-l6ikwn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Most cases of endometriosis are not diagnosed by primary care providers, but by specialists — namely OBGYNs to whom they are referred. Long waiting lists to see specialists can contribute to delayed diagnosis.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>The unfortunate outcome for these patients is not just their reduced ability to participate in activities. It also means they experience significant losses in their economic productivity. Researchers have found that the average endometriosis patient in Canada <a href="https://doi.org/10.1016/s1701-2163(16)34986-6">loses around $3,400 in economic productivity per year.</a> </p>
<h2>Delayed diagnosis</h2>
<p>One of the significant challenges faced by people with endometriosis is receiving a diagnosis. Patients experience an average delay of <a href="https://doi.org/10.1016/j.jogc.2019.10.038">5.4 years</a> from the onset of symptoms to diagnosis. The symptoms are similar to other reproductive health issues (such as <a href="https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/">polycystic ovary syndrome</a>) or severe period pain, which can be confusing for non-specialist health-care professionals. </p>
<p>Research with endometriosis patients has shown that most cases of endometriosis are not diagnosed by primary care providers, <a href="https://doi.org/10.1016/j.srhc.2015.11.003">but by specialists</a> — namely OBGYNs to whom they are referred. Taken together with long waiting lists for specialists, the barriers to diagnosis are significant. </p>
<p>Another barrier is that women often have difficulty convincing care providers their pain is real and a cause of concern. In a recent research project, one of us (Sarah Seabrook) examined 70 publicly available accounts of people experiencing endometriosis, including quotes printed in newspapers, as well as from the narratives published by endometriosis not-for-profit <a href="https://endoact.ca/">EndoAct</a>. </p>
<p>Patients described being dismissed, that their pain was “<a href="https://endoact.ca/maureen-2/">just muscle pain</a>,” “<a href="https://endoact.ca/kat/">all women go through this</a>,” and “<a href="https://www.cbc.ca/news/canada/saskatoon/endometriosis-chelsea-fataki-1.4605830">this is the way cycles are for women</a>,” and to live with it.</p>
<p>This dismissal of pain is particularly troublesome because people don’t often share their menstrual experiences and may be unable to differentiate between normal and abnormal menstrual experiences. In an article published by CBC News in 2021, a woman with endometriosis reported that the first few times she had her period, she was hospitalized for severe pain, but because this was her initial experience of menstruation, “<a href="https://www.cbc.ca/news/canada/british-columbia/endometriosis-lacking-research-1.5910342">she thought the pain related to her period was normal</a>.”</p>
<h2>Lack of effective treatments</h2>
<p>Once endometriosis is diagnosed, there are significant barriers to receiving effective treatment. <a href="https://doi.org/10.1016/j.fertnstert.2017.01.003">The first line of treatment is typically hormonal birth control</a>, which does nothing to address the growth of endometrium-like tissue, although for some people it can help with controlling menstrual pain. The same is true of anti-inflammatories and painkillers, which can reduce pain, but do little for the growth of endometrium-like tissue. </p>
<p>When things are more severe, patients might be given surgical options such as tissue excision (removing the entire endometriosis lesion) or ablation (burning off the surface of the endometriosis lesion). However, these procedures are rarely curative — the excess endometrium-like tissue grows back in a lot of cases. As a final resort, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/">some patients undergo a hysterectomy</a>. For the most part, endometriosis care is focused on either temporarily reducing pain, or temporarily controlling the growth of tissue. </p>
<p>The lack of effective treatment options is tied to an ongoing failure to understand endometriosis, its underlying causes and effects. Leading <a href="https://doi.org/10.1503/cmaj.220637">Canadian experts</a> have been calling for the improved understanding of endometriosis care and its treatment options, and <a href="https://endoact.ca/wp-content/uploads/2023/04/DiscussionENF2023.pdf">advocates</a> have been mobilizing for increased funding to understand, diagnose and treat endometriosis in Canada. </p>
<p>To improve outcomes, endometriosis patients need more research, more options and more attention to be paid to the disease. The newly announced federal investment in endometriosis research and care by the federal government is a good first step — although continued funding and support will be needed to address the continued, far-reaching effects of endometriosis in Canada.</p>
<p><em>This is a corrected version of a story originally published on Dec. 4, 2023. The earlier story used the term “endometrial tissue” instead of “endometrium-like tissue” or “tissue similar to endometrium tissue.”</em></p><img src="https://counter.theconversation.com/content/217881/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alana Cattapan receives funding from the Social Sciences and Humanities Research Council of Canada and the Canadian Institutes of Health Research. </span></em></p><p class="fine-print"><em><span>Sarah Seabrook does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Endometriosis often means years of severe pain, lost productivity and dismissed symptoms before getting a diagnosis — followed by ineffective treatment. New funding aims to change this pattern.Sarah Seabrook, Research Assistant in the Department of Political Science, University of WaterlooAlana Cattapan, Assistant Professor and Canada Research Chair in the Politics of Reproduction, University of WaterlooLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2038292023-11-01T12:36:19Z2023-11-01T12:36:19ZEndometriosis afflicts millions of women, but few people feel comfortable talking about it<figure><img src="https://images.theconversation.com/files/555396/original/file-20231023-21-48765g.jpg?ixlib=rb-1.1.0&rect=38%2C0%2C5046%2C3369&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Endometriosis pain can be so severe that it impairs a person's ability to keep up with school, succeed at work or have a satisfying sex life.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/stomach-pain-royalty-free-image/1463546435?phrase=pain&adppopup=true">Kinga Krzeminska/Moment via Getty Images</a></span></figcaption></figure><p><a href="https://www.who.int/news-room/fact-sheets/detail/endometriosis#">Endometriosis</a> causes physical, sexual and emotional pain. About <a href="https://www.ox.ac.uk/news/2023-03-14-global-study-shows-experience-endometriosis-rooted-genetics">190 million people around the globe</a> have endometriosis, <a href="https://gonzalez-colon.house.gov/media/press-releases/house-approves-push-finkenauer-and-endometriosis-caucus-double-research">including one in 10 American women</a>, but there has historically been <a href="https://doi.org/10.1007/s00404-023-07205-3">a deafening silence</a> about the disease and the pervasive impact it can have on a person’s life. </p>
<p>While endometriosis is a chronic gynecological illness that can affect anyone with a uterus – women, transgender men and nonbinary individuals – it often goes undiagnosed because its symptoms can be attributed to other physical or psychological concerns. Patients presenting with this pain are often told it is “all in your head.” </p>
<p>However, endometriosis is becoming a more visible illness, thanks in part to celebrities such as Lena Dunham, Chrissy Teigen, Amy Schumer, Whoopi Goldberg and others who have <a href="https://www.everydayhealth.com/endometriosis/living-with/celebrities-who-speak-endometriosis/">begun sharing their stories publicly</a>. After going undiagnosed for 23 years, Padma Lakshmi, a popular cookbook author, actress and host of the TV show “Top Chef,” founded <a href="https://www.endofound.org/">EndoFund, previously Endometriosis Foundation of America</a>, in 2009 so that others do not have to go through what she did.</p>
<p>I am a <a href="https://www.adler.edu/programs/kristina-s-brown/">couple and family therapy professor, clinician</a> and <a href="https://scholar.google.com/citations?user=ZeuvLPoAAAAJ&hl">researcher</a>. My own endometriosis diagnosis at the age of 19 has inspired my work exploring how this illness affects others beyond the physical symptoms.</p>
<p>To better understand the impact of endometriosis on relationships, I interviewed 10 couples about their experiences of diagnosis, treatment and living with this disease. Through their stories of how endometriosis-related pain can affect every aspect of daily life, including their intimate relationships, I provide some specific recommendations. The quotes I have included in this article <a href="https://surface.syr.edu/mft_etd/14/">are from my doctoral dissertation research</a>. </p>
<h2>The basics of endometriosis</h2>
<p>When a person has endometriosis, the endometrial cells that line their uterus “implant” in places outside the uterus, such as the ovaries, fallopian tubes and the lining of the abdomen — called the <a href="https://teachmeanatomy.info/abdomen/areas/peritoneum/">peritoneum</a>. At the end of each menstrual cycle, the uterus sheds its lining, which exits the body via the cervix and vagina. The “misplanted” endometrial cells also shed, but they have no place to go – resulting in internal bleeding, inflammation and pain. </p>
<p>An endometriosis diagnosis is described in stages related to the visual presence of the disease, from minimal, or Stage 1, to severe, or Stage 4. However, there is no connection between the stage and the experience of pain. </p>
<p>One symptom of endometriosis is <a href="https://doi.org/10.1080/10410236.2018.1440504">intense pain during the menstrual cycle</a>. Another is pain with sex. Because pain with menses or sex can be attributed to “normal” pain, a history of sexual abuse or psychiatric reasons such as a dislike of sex, some people with endometriosis wait an average of seven years for diagnosis, which can <a href="https://doi.org/10.1016/j.advms.2022.02.003">be visually confirmed only through</a> a procedure called <a href="https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/laparoscopy">laparoscopy</a>. </p>
<p>In addition to these and other types of severe pain, endometriosis <a href="https://doi.org/10.1111/jocn.16145">can also cause infertility</a>, and patients who want to have children must often undergo <a href="https://doi.org/10.3389/fsurg.2022.1049119">medical or surgical interventions</a> to conceive.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/uu0EKzRBvg4?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Dr. Megan Wasson of the Mayo Clinic explains what endometriosis is and how it can be treated.</span></figcaption>
</figure>
<h2>Impacts on school, work and sex</h2>
<p>Physical pain from endometriosis can be debilitating. Adolescents with endometriosis <a href="https://theconversation.com/endometriosis-can-end-womens-careers-and-stall-their-education-thats-everyones-business-179846">may struggle to keep up</a> with their classes, friends, homework or extracurricular activities when the pain becomes too severe. They may <a href="https://doi.org/10.1016/j.jpag.2021.01.021">shift to home-schooling or virtual learning</a> <a href="https://www.yalemedicine.org/news/teens-endometriosis">to complete their studies</a>.</p>
<p>The pain can also deeply <a href="https://theconversation.com/endometriosis-can-end-womens-careers-and-stall-their-education-thats-everyones-business-179846">affect a career trajectory</a>. “I almost lost my job because of time off,” one interviewee told me. “In fact, when I had to get my hysterectomy, I walked in to tell my manager and he goes, ‘Well, I hope you’re not going to tell me that you have to have a hysterectomy and have to be out for six weeks!’ And I just broke down in tears.” </p>
<p>All of my participants shared experiences where doctors <a href="https://doi.org/10.3390/ijerph20043362">dismissed complaints</a> of sexual pain – called <a href="https://www.mayoclinic.org/diseases-conditions/painful-intercourse/symptoms-causes/syc-20375967">dyspareunia</a> – from endometriosis. This can delay diagnosis and treatment.</p>
<p>Sex and intimacy often become nonexistent, while some couples shared that they have come to accept that <a href="https://hdl.handle.net/2123/22345">pain is part of sex</a>. One woman shared with me: “I don’t want to be touched or have my naked body seen because I feel bloated and ugly and I’m in horrible pain!” </p>
<p>Partners can also be affected emotionally. “I just feel horrible,” one told me. “There are times when we are having sex that I actually feel guilty that I know that I am hurting her and I know she is going to be in pain and it makes me unhappy.”</p>
<p>These experiences of pain, of not being believed by doctors and professionals, of negative effects on education and career and of intimacy destroyed create a heavy emotional burden on individuals and relationships. </p>
<h2>Breaking the silence around endometriosis</h2>
<p>When I was diagnosed with endometriosis, it changed the course of my life. My partner and I learned to expand our definition of intimacy and to redistribute household responsibilities when I was incapacitated. As the risk of infertility only increases without intervention, we started conversations about having children earlier than anticipated. My diagnosis also led me to focus my professional identity as a medical family therapist to help others deal with endometriosis and chronic illnesses.</p>
<p>Based on this experience, here are some ways to break this silence:</p>
<ul>
<li><p>Learn about endometriosis. It directly helps when one’s support systems are educated.</p></li>
<li><p>Separate the person from the disease. When the pain you are experiencing from endometriosis is debilitating, help those around you who are also affected to understand that it is because of your endometriosis and it is not personal. </p></li>
<li><p>Speak from your own experience, saying, “I …” rather than “You …” When we do this, it decreases the other person’s defenses and opens up the communication, making space for connection.</p></li>
</ul>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/KZBTYViDPlQ?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Social work researcher Brené Brown describes how to create a genuine empathetic connection with another person.</span></figcaption>
</figure>
<h2>Recommendations from people living it</h2>
<p>My research participants shared their own recommendations with me, especially the importance of <a href="https://doi.org/10.12968/bjon.2005.14.9.18073">believing that their pain is real</a>; accept that what they are sharing is their very real experience, and let them know that they are believed. </p>
<p>Bestselling author and social work researcher <a href="https://www.youtube.com/watch?v=KZBTYViDPlQ&ab_channel=DianaSimonPsihoterapeut">Brené Brown has said</a>, “Empathy fuels connection, sympathy drives disconnection.” Approaching someone with endometriosis from a position of empathy sends a message that you <a href="https://doi.org/10.5301/JE.2011.8906">want to work with them collaboratively</a>. </p>
<p>By practicing these important relationship skills, we can break the silence around endometriosis.</p><img src="https://counter.theconversation.com/content/203829/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>I continue to be grateful to the ten couples who shared their experiences of painful sex with endometriosis for my dissertation research.</span></em></p>Health care providers often dismiss endometriosis pain as ‘all in your head’ − which can delay a correct diagnosis and treatment for years.Kristina S. Brown, Professor and Chair of Couple and Family Therapy, Adler UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2117652023-09-19T11:13:49Z2023-09-19T11:13:49ZChronic pelvic pain affects up to 26% of women – our latest research brings us closer to better treating it<figure><img src="https://images.theconversation.com/files/546669/original/file-20230906-20-51oc4q.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6558%2C4290&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A lack of understanding about chronic pelvic pain has left women with limited treatment options.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/beautiful-young-black-girl-suffering-severe-2190845421">Studio Romantic/ Shutterstock</a></span></figcaption></figure><p>Chronic pelvic pain affects between <a href="https://bjgp.org/content/51/468/541.short">5% and 26%</a> of women worldwide. It can be associated with conditions such as endometriosis (where tissue resembling the lining of the womb is found outside the womb) and interstitial cystitis (bladder pain syndrome). Some women also have chronic pelvic pain without a specific cause. </p>
<p>Despite how many women are affected by chronic pelvic pain, we still don’t fully understand the <a href="https://www.frontiersin.org/articles/10.3389/frph.2023.1140857/full">mechanisms underlying it</a>. This has meant that women suffering from chronic pelvic pain have limited treatment options.</p>
<p>There are many reasons why the mechanisms causing chronic pelvic pain remain unknown. One of these is that there’s huge variation in the intensity and type of pain experienced – even in cases where the chronic pain is caused by a specific disease. </p>
<p>For example, some women with endometriosis experience no pelvic pain, others experience severe pain every day and others experience everything in between. The pain experienced also <a href="https://www.nejm.org/doi/10.1056/NEJMra1810764">doesn’t correlate</a> with what endometriosis looks like in the body. </p>
<hr>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/542294/original/file-20230811-4652-hn8w80.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p><em>This article is part of <a href="https://theconversation.com/uk/topics/womens-health-matters-143335">Women’s Health Matters</a>, a series about the health and wellbeing of women and girls around the world. From menopause to miscarriage, pleasure to pain the articles in this series will delve into the full spectrum of women’s health issues to provide valuable information, insights and resources for women of all ages.</em></p>
<p><em>You may be interested in:</em></p>
<p><em><a href="https://theconversation.com/vulva-health-conditions-its-time-to-shatter-the-silence-210999">Vulva health conditions: it’s time to shatter the silence</a></em></p>
<p><em><a href="https://theconversation.com/birth-trauma-is-a-growing-problem-experiencing-it-myself-revealed-how-few-people-understand-it-209634">Birth trauma is a growing problem — experiencing it myself revealed how few people understand it</a></em></p>
<p><em><a href="https://theconversation.com/uks-first-successful-womb-transplant-key-questions-answered-212115">UK’s first successful womb transplant – key questions answered</a></em></p>
<hr>
<p>There are also many <a href="https://www.sciencedirect.com/science/article/pii/S1521693418300324">different types of pain experienced</a> with chronic pelvic pain – including pain while menstruating, pain during sex and pain when urinating or having a bowel movement. People with chronic pelvic pain may experience any of these and in any combination. </p>
<p>We know from other chronic pain conditions (such as fibromyalgia and diabetic neuropathy) that different mechanisms cause pain depending on the person – and that each of these <a href="https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(21)00392-5.pdf">different mechanisms</a> respond differently to <a href="https://bnf.nice.org.uk/treatment-summaries/neuropathic-pain/">treatments</a>. </p>
<p>Research we conducted earlier this year has now shown that chronic pelvic pain operates similarly. Our research showed that the mechanisms that cause chronic pelvic pain seem to <a href="https://journals.lww.com/pain/fulltext/9900/comprehensive_quantitative_sensory_testing_shows.318.asp">vary from person to person</a>.</p>
<h2>Mechanisms of pain</h2>
<p>We conducted our study on 85 women – 59 of whom had chronic pelvic pain. Of those with chronic pelvic pain, 25 had endometriosis, 13 had bladder pain syndrome, 15 had both endometriosis and bladder pain syndrome and six had pain with no specific cause. Participants were from the UK, US and Portugal and were aged between 18 and 50.</p>
<figure class="align-center ">
<img alt="A woman sitting in an office chair holds her stomach in pain." src="https://images.theconversation.com/files/546671/original/file-20230906-15-pa2ahh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/546671/original/file-20230906-15-pa2ahh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/546671/original/file-20230906-15-pa2ahh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/546671/original/file-20230906-15-pa2ahh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/546671/original/file-20230906-15-pa2ahh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/546671/original/file-20230906-15-pa2ahh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/546671/original/file-20230906-15-pa2ahh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Those with chronic pelvic pain had lower pain thresholds to pressure.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/long-hair-woman-holding-abdomen-sitting-526393795">Zetar Infinity/ Shutterstock</a></span>
</figcaption>
</figure>
<p>To understand whether the mechanism causing pelvic pain differed depending on the person, we carried out a series of sensory tests. This involved exposing the participants to various sensations – such as vibration, touch, pressure and temperature. </p>
<p>We also asked participants how these sensations felt to them, and at what point these sensations became painful. This allowed us to look at different types of nerves and how they function. </p>
<p>We also looked at how responses differed between those with chronic pelvic pain and those without pain. Participants were then grouped according to their sensory profiles.</p>
<p>One of the most striking findings was that women with chronic pelvic pain had lower pain thresholds when it came to sensations of pressure on the lower tummy and pelvis compared with the control group. This was particularly true in those with bladder pain. This suggests there’s communication between the pelvic organs and the skin, resulting in more pain.</p>
<p>We also found that some women with chronic pain were less able to detect changes in temperature and touch. This loss in nerve function suggests that for some, chronic pelvic pain may be caused by <a href="https://www.frontiersin.org/articles/10.3389/fpain.2021.743812/full">damage to the nerves</a>.</p>
<p>We then looked at the overall sensory profiles of the chronic pelvic pain group to see which <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5515640">chronic pain subgroup</a> they fitted into. We found that around 7% had a “healthy” sensory profile – meaning the way they felt the sensations were as we would expect from healthy people. </p>
<p>Around half of those with chronic pelvic pain were placed in the “<a href="https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(21)00392-5.pdf">mechanical hyperalgesia</a>” subgroup. This meant they had changes in pain processing parts of the brain, which meant the volume of their pain was “turned up” by default.</p>
<h2>Parallels of pain</h2>
<p>This work gives new insight into the complexity of chronic pelvic pain in terms of the mechanisms causing it. It helps us draw parallels with other chronic pain conditions, which may mean we can use research and treatments that have worked for these conditions to pick new targets for treating chronic pelvic pain. </p>
<p>The next steps of this research will be working out what treatments will work for whom depending on their sensory pain profile and the underlying mechanisms causing their pain.</p>
<p>Treatments for chronic pelvic pain have limited effectiveness. For example, studies show <a href="https://pubmed.ncbi.nlm.nih.gov/28668150/">11-19% of women with endometriosis</a> have no reduction in pain, even <a href="https://pubmed.ncbi.nlm.nih.gov/31718952/">after surgery</a>. Based on the findings of our study, a new approach could mean that specific treatments can be chosen instead for each person, depending on the mechanisms causing their pain. This would hopefully be more effective.</p>
<p>Given that chronic pelvic pain is so prevalent in women worldwide and has a huge effect on their <a href="https://pubmed.ncbi.nlm.nih.gov/32532273/">quality of life</a> and <a href="https://pubmed.ncbi.nlm.nih.gov/35926345/">wellbeing</a>, moving towards a more personalised approach to treatment could result in huge improvements for <a href="https://pubmed.ncbi.nlm.nih.gov/33442286/">millions of women</a>.</p><img src="https://counter.theconversation.com/content/211765/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lydia Coxon is affiliated with the Pelvic Pain Support Network.
This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No (777500). This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.</span></em></p><p class="fine-print"><em><span>Katy Vincent receives research funding from NIHR, UKRI, NIH, IMI-2, and Bayer AG. Her institution has received honoraria for consultancy she has done for Bayer AG, Eli Lilly, AbbVie and Reckitts.</span></em></p>Our research showed that the mechanisms causing chronic pelvic pain vary from person to person.Lydia Coxon, Postdoctoral Research Assistant in Pain Data Collection and Analysis, University of OxfordKaty Vincent, Associate Professor, Pain in Women Group, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2013892023-06-11T20:52:50Z2023-06-11T20:52:50ZWhat’s a TENS machine? Can it help my period pain or endometriosis?<figure><img src="https://images.theconversation.com/files/529235/original/file-20230531-17-nf3bmd.jpg?ixlib=rb-1.1.0&rect=1%2C0%2C997%2C667&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/cropped-close-view-girl-touch-stomach-1354368302">Shutterstock</a></span></figcaption></figure><p>If you’ve been on social media recently you might have noticed sponsored posts and ads for a variety of small, portable electrical devices. These claim to manage period or <a href="https://www.endometriosisaustralia.org/about-endo">endometriosis</a> pain safely and without drugs.</p>
<p>Most devices have a small box that generates an electrical pulse, and wires connected to sticky pads, which go on your tummy.</p>
<p>So how are these devices supposed to stop your pain? Are they safe? Do they actually work?</p>
<p><div data-react-class="InstagramEmbed" data-react-props="{"url":"https://www.instagram.com/p/CT7o8DnPaXs","accessToken":"127105130696839|b4b75090c9688d81dfd245afe6052f20"}"></div></p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/health-check-are-painful-periods-normal-62290">Health Check: are painful periods normal?</a>
</strong>
</em>
</p>
<hr>
<h2>They’re mini TENS machines</h2>
<p>These devices use “transcutaneous electrical nerve stimulation”, better known as TENS. In other words, they apply small electrical pulses across the skin to stimulate certain types of nerves.</p>
<p>TENS machines are not new. They’ve been around since the <a href="https://patents.google.com/patent/US3817254">1970s</a> and have been used for a <a href="https://www.healthdirect.gov.au/tens">variety of painful conditions</a>, from muscular injuries to pain relief in labour. </p>
<p>However, these latest devices are compact and easy to wear discretely compared to the older models. They’re fairly simple to use, portable, you can use them at home, and they cost around A$50-200. </p>
<p>It’s easy to see why devices like these might be popular. <a href="https://doi.org/10.1016/j.jpag.2020.11.007">Half</a> of people with period pain say over-the-counter medication such as ibuprofen doesn’t get rid of their period pain. Most people with endometriosis <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/imj.15494">report</a> major issues with getting adequate pain relief.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/from-sharp-butt-pains-to-period-poos-5-lesser-known-menstrual-cycle-symptoms-191352">From sharp butt pains to period poos: 5 lesser-known menstrual cycle symptoms</a>
</strong>
</em>
</p>
<hr>
<h2>How might TENS work?</h2>
<p>All TENS-based devices generate small electrical pulses that feel a little like <a href="https://patient.info/treatment-medication/painkillers/tens-machines">mild electrical shocks</a>. These pulses are transmitted through the surface of the skin via the sticky pads. </p>
<p>You generally place these pads where the pain is. So for period pain that’s usually at or below the level of the belly button but above the pubic region. You can also place the pads on your lower back or even on your tailbone (sacrum). This is because some nerves near your tailbone also affect the pelvic area.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Sticky pad of TENS machine on skin" src="https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=499&fit=crop&dpr=1 754w, https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=499&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/529236/original/file-20230531-21-4m3nnt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=499&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">You place two sticky pads on your tummy or lower back.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/tens-electrodes-positioned-back-pain-treatment-466080803">Shutterstock</a></span>
</figcaption>
</figure>
<h2>Here’s what we know so far</h2>
<p>The exact mechanisms of how TENS works to reduce pain is still unclear. There are likely <a href="https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011890.pub3/full">many different pathways</a>. </p>
<p>First, we need to first talk about different types of nerves. <a href="https://www.ncbi.nlm.nih.gov/books/NBK10965/">Nociceptors</a> are nerves that send “danger” impulses about actual or potential tissue damage. Sensory nerves in your skin transmit information about things such as touch and pressure.</p>
<p>The <a href="https://www.science.org/doi/10.1126/science.150.3699.971">gate control theory of pain</a> says the spinal cord has “gates” that can be open or closed. When these gates are open, nerves can transmit these danger impulses up the spinal cord to the brain where they may be interpreted as “pain”. If these gates are closed, these impulses can’t reach the brain as easily.</p>
<p>TENS machines, especially at high frequency (greater than 50 pulses per second), tend to stimulate <a href="https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011890.pub3/full">sensory nerves</a> (the ones in your skin). These sensory nerves also send signals to your brain, but faster than the danger ones.</p>
<p>These sensory signals can close the “gates” at certain parts of the spinal cord. So if the TENS machine can stimulate enough of these sensory nerves in your skin, it will block at least some of these danger impulses from reaching the brain. The fewer danger impulses that reach the brain, the less pain you are likely to feel.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Closed farm gate across dirt track" src="https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/529241/original/file-20230531-27-4m3nnt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">TENS machines may close the ‘gates’ at certain parts of the spinal cord so fewer ‘danger’ impulses reach the brain.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/old-iron-farm-field-gate-red-2260337685">Shutterstock</a></span>
</figcaption>
</figure>
<p>Then there’s the concept of <a href="https://www.news-medical.net/health/What-are-Endogenous-Opioids.aspx">endogenous opioids</a> as pain relief. These are pain relieving chemicals the body makes itself. </p>
<p>TENS machines stimulate the release of these chemicals, with different types of endogenous opioids released depending on the frequency of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027071/">stimulation</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-what-is-pain-and-what-is-happening-when-we-feel-it-49040">Explainer: what is pain and what is happening when we feel it?</a>
</strong>
</em>
</p>
<hr>
<h2>So does TENS work?</h2>
<p><strong>For period pain</strong></p>
<p>A systematic <a href="https://www.sciencedirect.com/science/article/pii/S155083072030286X">review</a> in 2022 found four studies looking at TENS to manage primary dysmenorrhea (period pain that occurs without any physical changes in the pelvis).</p>
<p>There was a significant reduction in period pain when high-frequency TENS (more than 50 pulses per second) was compared to sham TENS (where the machine looks the same but doesn’t deliver a pulse). </p>
<p>This is in line with an older <a href="https://www.cochrane.org/CD002123/MENSTR_transcutaneous-electrical-nerve-stimulation-for-primary-dysmenorrhoea">Cochrane review</a> that found similar benefits. </p>
<p>Pain relieving effects only tend to last while the device is active.</p>
<p><strong>For endometriosis</strong></p>
<p>Endometriosis is where tissue similar to the lining of the uterus is found outside the uterus, commonly in the pelvis. There is only <a href="https://doi.org/10.1016/j.ejogrb.2015.07.009">one</a> study of TENS for pelvic pain due to endometriosis. </p>
<p>This study compared two types of TENS – one using a higher frequency for 20 minutes twice a day, and one using a lower frequency for 30 minutes once per week. Both types used pads placed on the tailbone, and women were told to make the pulses “strong, but comfortable”. </p>
<p>Both types improved pelvic pain, pain after sex, and quality of life, but not period pain. This was a very small study (11 women in each group) and there was no control or placebo group. So we need larger studies with a proper control group before we can be sure if TENS works for endometriosis pain.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/i-have-painful-periods-could-it-be-endometriosis-101026">I have painful periods, could it be endometriosis?</a>
</strong>
</em>
</p>
<hr>
<h2>Is it safe?</h2>
<p>Most <a href="https://www.sciencedirect.com/science/article/pii/S155083072030286X">studies</a> report no side effects when the pads are used on the abdomen or lower spine.</p>
<p>However, if you turn up the intensity too high it <a href="https://www.tandfonline.com/doi/full/10.2147/IJWH.S220523">can be uncomfortable</a>. You could also get a rash from the adhesive on the pads.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/first-periods-can-come-as-a-shock-5-ways-to-support-your-kid-when-they-get-theirs-177920">First periods can come as a shock. 5 ways to support your kid when they get theirs</a>
</strong>
</em>
</p>
<hr>
<h2>Which one to buy?</h2>
<p>All TENS machines should allow you to change the <em>intensity</em> (how strong the pulse feels). Some also allow you to change the <em>frequency</em> (how often the pulses happen).</p>
<p>If you are going to use the device occasionally (less than 4-5 days per month) you may just need a device that allows you to change the <a href="https://doi.org/10.2522/ptj.20120281">intensity</a>.</p>
<p>To get the best relief, the machine should be turned up high enough so it delivers noticeable pulses, but is not painful. So you need to find your own comfort level.</p>
<p>For period pain, <a href="https://www.tandfonline.com/doi/full/10.2147/IJWH.S220523">high frequency</a> (more than 50 pulses per second) shows better results than low frequency (usually 2-5 pulses per second). So make sure the device you’re thinking of buying is either set to a high frequency or you can change the frequency.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Woman clutching tummy and head lying on sofa" src="https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/529242/original/file-20230531-15-mlq5gp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Many people find it hard to manage period pain. So would TENS help?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/sick-muslim-woman-hijab-having-acute-1616145232">Shutterstock</a></span>
</figcaption>
</figure>
<p>For people with endometriosis, it’s a little more tricky. You’ll probably going to want to use the device more often than a few days a month. </p>
<p>Unfortunately, like with taking regular opioid painkillers, with regular TENS use people can become <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3027071/">tolerant</a> to its pain-relieving effect, which means it doesn’t work as well as it did when you first started using it.</p>
<p>One possible solution to tolerance is to use <a href="https://academic.oup.com/ptj/article/93/10/1397/2735589">mixed-frequency TENS</a> where both high and low frequencies are alternated. You can also slowly increase the intensity level over time. </p>
<p>TENS also doesn’t work well when people are regular <a href="https://pubmed.ncbi.nlm.nih.gov/6965549/">opioid users</a>. This is important as people with endometriosis are often using <a href="https://www.jmig.org/article/S1553-4650(20)30291-0/fulltext">opioid medications</a> to manage their pain. If you are using opioids regularly, high-frequency TENS is likely to be a <a href="https://academic.oup.com/ptj/article/93/10/1397/2735589">better choice</a>.</p><img src="https://counter.theconversation.com/content/201389/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mike Armour does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>TENS machines for period pain are all over social media. But what are they? And do they work?Mike Armour, Associate Professor at NICM Health Research Institute, Western Sydney UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2028542023-05-31T01:58:39Z2023-05-31T01:58:39ZTrying for a baby? What you need to know about a vital part of your womb (and how to look after it)<figure><img src="https://images.theconversation.com/files/525306/original/file-20230510-19-vyabvw.jpg?ixlib=rb-1.1.0&rect=50%2C101%2C4128%2C2720&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/closeup-photo-young-woman-picking-sanitary-528070513">Shutterstock</a></span></figcaption></figure><p>Human reproduction is completely dependent on the healthy function of an underestimated but vital organ: the endometrium. This is the spongy tissue that lines the inner surface of the womb.</p>
<p>In the first half of the menstrual cycle, a healthy endometrium expands in response to the estrogen produced by a growing egg. The endometrium is then shed each month during menstruation. </p>
<p>Or, in the case of pregnancy, the endometrium accepts and nurtures the embryo.</p>
<h2>So you’re trying to get pregnant. What happens?</h2>
<p>When ovulation is triggered, the ovary starts to produce the hormones estrogen and progesterone. Progesterone causes the endometrial cells to prepare to accept an embryo, in a unique transition called “decidualisation”.</p>
<p>During decidualisation, endometrial cells display proteins that indicate it’s receptive for embryo attachment. After attachment, the junctions between endometrial cells loosen so an embryo can move beneath the endometrial surface. </p>
<p>Endometrial cells secrete substances that nurture the embryo, while immune cells protect the embryo and the endometrium while they move together and the placenta develops. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/health-check-how-to-get-pregnant-30529">Health Check: how to get pregnant</a>
</strong>
</em>
</p>
<hr>
<p>The surface of the endometrium is covered by a shield of glycoproteins (proteins attached to sugars) which protects it from bacteria and viruses. This shield can also <a href="https://doi.org/10.1038/s41598-021-03425-2">prevent an embryo from attaching to the lining</a>.</p>
<p>Progesterone helps to remove this glycoprotein shield about five days after ovulation. This is carefully timed so a fertilised egg will have developed into a blastocyst-stage embryo and be starting to hatch from its shell ready to interact with the exposed endometrial cells.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/525307/original/file-20230510-19-t3k1xt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/525307/original/file-20230510-19-t3k1xt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=441&fit=crop&dpr=1 600w, https://images.theconversation.com/files/525307/original/file-20230510-19-t3k1xt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=441&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/525307/original/file-20230510-19-t3k1xt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=441&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/525307/original/file-20230510-19-t3k1xt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=554&fit=crop&dpr=1 754w, https://images.theconversation.com/files/525307/original/file-20230510-19-t3k1xt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=554&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/525307/original/file-20230510-19-t3k1xt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=554&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The stages of embryo development.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com">Shutterstock</a></span>
</figcaption>
</figure>
<h2>It prevents the body rejecting the father’s sperm</h2>
<p>The endometrium must also retrain its immune cells to accept an embryo that contains the father’s foreign biological material, or “antigens”. </p>
<p>Tissues bearing these foreign antigens would usually provoke an immune rejection response, but the endometrium has adapted its immune response so an embryo can be accepted, and implant and grow, without rejection. </p>
<p>Although not essential for pregnancy, prior contact with the father’s semen <a href="https://www.jci.org/articles/view/122182">primes the mother’s immune response</a> and promotes acceptance of an embryo. Sexual activity enables paternal antigens, which are present in the fluid around sperm, to interact with the mother’s immune cells in the cervix and endometrium. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/whats-the-point-of-sex-its-communication-at-a-biological-level-67847">What's the point of sex? It's communication at a biological level</a>
</strong>
</em>
</p>
<hr>
<p>Paternal antigens are taken to lymph glands in the pelvic cavity where they are processed in a way that encourages the mother’s immune response to tolerate – not reject – these paternal antigens. </p>
<p>When paternal antigens on the embryo are next seen by the mother’s endometrial immune cells, they accept the embryo and nurture it. Implantation and placental development can then occur, maximising the chance of progression to a healthy pregnancy.</p>
<h2>Then what happens?</h2>
<p>For an embryo to grow beyond being a blastocyst, it must secure access to a robust blood supply. Oxygen and nutrients are sourced from the mother’s endometrium (called decidua in early pregnancy) during implantation via the placenta which is formed from outer cells of the embryo.</p>
<p>The process of implantation involves a complex sequence of cellular steps that must progress correctly for pregnancy to occur. </p>
<p>The endometrial tissues have to be reorganised so the blood vessels grow towards the embryo. These vessels then open up to allow blood to flow into blood-filled spaces (called lacunae) that bathe the surface of the placenta. This allows oxygen and nutrients to move from the mother’s to the fetus’s blood supply.<br>
As these connections form, there can be minor bleeding a few days before a menstrual period is due. This is called “implantation bleeding”.</p>
<p>If any of these steps go awry, the embryo may fail to implant, there may be a brief interaction between the embryo and the endometrium that becomes disrupted (a “biochemical pregnancy” or very early miscarriage), or there may be implantation faults that cause a miscarriage some weeks later. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1188930437558820865"}"></div></p>
<h2>What can go wrong?</h2>
<p>The events at implantation have consequences for the rest of the pregnancy. </p>
<p>Even minor defects in the embryo or endometrial interaction at implantation can <a href="https://doi.org/10.3389/fimmu.2019.00478">increase the risk</a> of common pregnancy conditions such as:</p>
<ul>
<li>preterm labour</li>
<li>high blood pressure (preeclampsia)</li>
<li>sub-optimal fetal growth</li>
<li>premature delivery</li>
<li>pregnancy loss.</li>
</ul>
<h2>What conditions affect the endometrium?</h2>
<p>Inflammation is the hallmark of an unhealthy endometrium and contributes significantly to implantation disorders and miscarriage.</p>
<p>Endometritis (infection of the endometrium) and inflammatory fluid from blocked fallopian tubes (hydrosalpinx) can damage endometrial cells. </p>
<p>Dying and damaged cells attract immune cells that attack and engulf them. When damaged or dying cells are in the endometrium (decidua), the placenta doesn’t grow well and the pregnancy can be affected. </p>
<figure class="align-center ">
<img alt="Woman holds. her pelvis" src="https://images.theconversation.com/files/525109/original/file-20230509-26-5qvg2s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/525109/original/file-20230509-26-5qvg2s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/525109/original/file-20230509-26-5qvg2s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/525109/original/file-20230509-26-5qvg2s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/525109/original/file-20230509-26-5qvg2s.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/525109/original/file-20230509-26-5qvg2s.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/525109/original/file-20230509-26-5qvg2s.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Inflammation can contribute to implantation disorders and miscarriage.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/close-up-photo-of-woman-touching-her-abdomen-3958579/">Pexels/Polina Zimmerman</a></span>
</figcaption>
</figure>
<p><a href="https://theconversation.com/au/topics/endometriosis-2405">Endometriosis</a> (endometrial tissue outside the uterus) and <a href="https://theconversation.com/adenomyosis-causes-pain-heavy-periods-and-infertility-but-youve-probably-never-heard-of-it-104412">adenomyosis</a> (endometrial tissue in the muscle of the uterus) also increase inflammation. In these conditions, endometrial cells in the wrong location grow and then die in response to cyclic menstrual cycle hormones. The immune system then has to be activated to clear the dead cells, creating an inflammatory environment. </p>
<p>Autoimmune conditions and metabolic disorders such as diabetes and insulin resistance also activate the immune system and create an inflammatory endometrial environment. These conditions <a href="https://pubmed.ncbi.nlm.nih.gov/36192117/">have been linked</a> to recurrent miscarriage. </p>
<h2>How can you improve your endometrial health?</h2>
<p>There are several things you can do to support a healthy endometrium. </p>
<p>First, manage the lifestyle factors that increase stress on cells and promote inflammation. This will decrease the chances of implantation problems and miscarriage. </p>
<p>Cutting down on <a href="https://academic.oup.com/humrep/article/22/2/543/2939206">smoking</a>, <a href="https://www.sciencedirect.com/science/article/abs/pii/S0890623819300073?via%3Dihub">marijuana</a>, too much <a href="https://academic.oup.com/biolreprod/article/99/6/1266/5049471">coffee</a> or <a href="https://academic.oup.com/humrep/article/36/9/2538/6294415">alcohol</a>, and <a href="https://www.sciencedirect.com/science/article/pii/S0002916522007663?via%3Dihub">avoiding</a> sugary and processed foods will make it easier for the endometrium to stay healthy. </p>
<p>For some women, the diagnosis and treatment of medical conditions that cause inflammation, such as diabetes and autoimmune problems, ensures treatments can start. Treating these conditions can reduce the risk of miscarriage and pregnancy complications.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/considering-using-ivf-to-have-a-baby-heres-what-you-need-to-know-108910">Considering using IVF to have a baby? Here's what you need to know</a>
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</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/202854/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Louise Hull is Professor and leader of the endometriosis and endometrium group at and at the Robinson Research Institute at the University of Adelaide.
She works as a Fertility Specialist (FRANZCOG, CREI) and is also the Medical Director / Owner of Embrace Fertility, Adelaide.
Louise has previously received funding from the Federal Government Grant for the EndoZone project and MRFF Funding for Imagendo.
Louise Hull also works as a Staff Specialist Consultant at the Women's and Children's Hospital Adelaide </span></em></p><p class="fine-print"><em><span>Sarah Robertson receives funding from the National Health and Medical Research Council of Australia, and the Australian Research Council.</span></em></p>Human reproduction is completely dependent on the health of an underestimated but vital organ: the endometrium. Here’s how it works.Louise Hull, Professor and Endometriosis Group Leader, The Robinson Research Institute, University of AdelaideSarah Robertson, Professor and Director, Robinson Research Institute, University of AdelaideLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2063032023-05-26T11:23:05Z2023-05-26T11:23:05ZAdenomyosis: from symptoms to treatment, two women’s health experts explain this little known condition<figure><img src="https://images.theconversation.com/files/528324/original/file-20230525-23-2jpr6q.jpg?ixlib=rb-1.1.0&rect=8%2C0%2C5329%2C3553&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-woman-suffering-strong-abdominal-pain-1254094441">Leszek Glasner/Shutterstock</a></span></figcaption></figure><p>BBC presenter <a href="https://www.bbc.co.uk/news/av/uk-65670355">Naga Munchetty</a> recently revealed that she suffers from <a href="https://www.nhsinform.scot/healthy-living/womens-health/girls-and-young-women-puberty-to-around-25/periods-and-menstrual-health/adenomyosis">adenomyosis</a>, a chronic condition that affects the uterus. She spoke of how her pain can leave her unable to move and how a recent flare-up was so intense her husband had to <a href="https://inews.co.uk/news/health/adenomyosis-naga-munchetty-condition-endometriosis-2356366?ico=most_popular">call an ambulance</a>.</p>
<p>Yet many people have never heard of this condition, despite it affecting as many as <a href="https://www.sciencedirect.com/science/article/abs/pii/S1521693406000319?via%3Dihub">one in five women</a>.</p>
<p>Adenomyosis can cause symptoms including irregular and heavy menstrual bleeding and pelvic pain. The severity of symptoms varies between patients – up to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419978/#">one-third of women</a> with adenomyosis may have minimal or no symptoms at all. </p>
<p>The condition can also affect <a href="https://academic.oup.com/humupd/article/25/5/593/5533432?login=false">fertility</a>. Women with adenomyosis who do become pregnant have <a href="https://www.rbmojournal.com/article/S1472-6483(20)30528-9/fulltext">an increased risk</a> of miscarriage, pre-term delivery, pre-eclampsia and bleeding after delivery. </p>
<p>So what causes adenomyosis, and how is it diagnosed and treated? There’s still a lot we don’t understand about this condition, but here’s a bit about what we know so far.</p>
<h2>What causes adenomyosis?</h2>
<p>There are two key layers in the uterus. The endometrium is the inner layer where embryos implant. If there is no pregnancy, this layer is shed during a period. The myometrium is the muscular layer of the uterus. It expands during pregnancy and is responsible for contractions. In people with adenomyosis, endometrium-like cells are found in the wrong place – <a href="https://www.mdpi.com/1422-0067/22/20/10974">the myometrium</a>.</p>
<p>Although a large number of women with adenomyosis have endometriosis as well, adenomyosis is a distinct disease from <a href="https://www.nhs.uk/conditions/endometriosis/">endometriosis</a>. In endometriosis, endometrium-like cells are also found in the wrong place, but in this case outside of the uterus, mainly in the pelvic cavity.</p>
<p>Thanks to <a href="https://endometriosis.ca/">research</a>, <a href="https://endometriosis.org/">public engagement</a> and <a href="https://www.frontiersin.org/articles/10.3389/fpain.2022.889990/full">social media</a>, awareness of endometriosis has increased in recent years. Yet adenomyosis is still relatively unheard of.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/adenomyosis-causes-pain-heavy-periods-and-infertility-but-youve-probably-never-heard-of-it-104412">Adenomyosis causes pain, heavy periods and infertility but you've probably never heard of it</a>
</strong>
</em>
</p>
<hr>
<h2>Diagnosis options are changing and improving</h2>
<p>Adenomyosis is a difficult condition to diagnose. Historically, the presence of endometrium-like cells in the myometrium could only be verified by pathology assessment where the myometrium is <a href="https://www.mdpi.com/1422-0067/22/20/10974">examined under a microscope</a> after a hysterectomy (surgery to remove the uterus). </p>
<p>Recent years have seen increased diagnoses with the development of imaging technologies such as <a href="https://karger.com/goi/article-abstract/85/2/118/153958/A-Classification-Proposal-for-Adenomyosis-Based-on?redirectedFrom=fulltext">MRI</a> and detailed <a href="https://www.ajog.org/article/S0002-9378(09)00276-2/fulltext">pelvic ultrasound</a>. Although adenomyosis is now commonly identified without the need for a hysterectomy, doctors are still working towards developing a standardised method for non-surgical diagnosis. </p>
<p>As a result, it remains uncertain exactly how many women have adenomyosis. Although we know that <a href="https://www.sciencedirect.com/science/article/abs/pii/S1521693406000319?via%3Dihub">around 20% of women</a> having hysterectomies for reasons other than suspected adenomyosis are found to have evidence of the condition on pathology assessment.</p>
<h2>Adenomyosis is a complex condition</h2>
<p>The type of adenomyosis tissue growth in the myometrium can be either focal lesions (affecting a part of the uterus) or diffused (affecting a wide area of muscle). Adenomyosis can be further classified depending on the depth of endometrial-like tissue invasion into the myometrium. Scientists and doctors are still investigating whether the type or depth of the lesions <a href="https://link.springer.com/article/10.1007/s13669-022-00337-4">relates to symptoms</a> – the severity of symptoms and lesions don’t always tally.</p>
<p>We don’t yet understand why some women develop adenomyosis, though <a href="https://academic.oup.com/humrep/article/27/12/3432/652839">evidence shows</a> there is an increasing prevalence with age. </p>
<p>It is thought that the region between the endometrium and myometrium becomes damaged, either by the <a href="https://www.imrpress.com/journal/CEOG/24/1/pii/1997012">natural processes</a> of the menstrual cycle, pregnancies and childbirth, or medical procedures. In some women, damage to the endometrial tissue layer does not heal as it should and the endometrium-like cells enter and grow abnormally into the myometrium. These disrupt the normal functions <a href="https://rep.bioscientifica.com/view/journals/rep/164/5/REP-22-0224.xml">of the myometrium</a> leading to pain and bleeding. </p>
<p>It’s possible that a variety of mechanisms may contribute, and that there is not one common disease-causing factor behind adenomyosis. </p>
<h2>How is adenomyosis treated?</h2>
<p><a href="https://www.sciencedirect.com/science/article/pii/S001502821830013X#tbl1">Treatment strategies</a> include hormonal medications such as oral contraceptives, progesterone-containing pills, the insertion of a progesterone-releasing coil (for example, Mirena), or a drug called <a href="https://www.cancer.gov/publications/dictionaries/cancer-terms/def/gnrha">GnRHa</a> that stops the natural production of sex hormones. Non-hormonal treatments include <a href="https://www.nhs.uk/medicines/tranexamic-acid/">tranexamic acid</a>. These treatments aim to minimise menstrual bleeding. Pain is often treated with <a href="https://patient.info/medicine/mefenamic-acid-for-pain-and-inflammation-ponstan">non-steroidal anti-inflammatory drugs</a>. </p>
<p>Treatments that work for some women don’t for others, adding weight to the argument that there’s more than one type of adenomyosis. Treatment strategies should be tailored to patients, depending on their fertility wishes and symptoms.</p>
<p>If medical treatments are not providing adequate relief from symptoms, there are surgical options, namely removal of the focal lesions or a hysterectomy. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/endometriosis-three-reasons-care-still-hasnt-improved-157457">Endometriosis: three reasons care still hasn't improved</a>
</strong>
</em>
</p>
<hr>
<h2>What lies ahead?</h2>
<p>Although adenomyosis is a common disorder that affects many women, including those of reproductive age, it doesn’t receive enough clinical and research attention. There is also a <a href="https://www.mdpi.com/1660-4601/18/23/12386">lack of knowledge and awareness</a> around adenomyosis among many healthcare professionals and the public. This needs to change so we can improve our understanding of the condition, diagnosis and treatment options. </p>
<p>Scientists and doctors who specialise in adenomyosis are still on the quest to find an accurate, non-invasive diagnostic method, and hopefully, one day, a cure.</p><img src="https://counter.theconversation.com/content/206303/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Adenomyosis can be debilitating, causing symptoms including irregular and heavy periods and pelvic pain.Jen Southcombe, Principal Investigator/Group Leader, Nuffield Department of Women’s and Reproductive Health, University of OxfordNura Fitnat Topbas Selcuki, PhD Candidate, Nuffield Department of Women’s and Reproductive Health, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1995682023-04-27T15:01:40Z2023-04-27T15:01:40ZWhy menstrual leave could be bad for women<figure><img src="https://images.theconversation.com/files/519854/original/file-20230406-18-29woex.jpg?ixlib=rb-1.1.0&rect=0%2C98%2C6000%2C3898&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/bad-period-full-length-view-caucasian-2064704318">NFstock/Shutterstock</a></span></figcaption></figure><p>Spain recently <a href="https://www.euronews.com/next/2023/02/16/spain-set-to-become-the-first-european-country-to-introduce-a-3-day-menstrual-leave-for-wo">adopted a menstrual leave policy</a>, which makes additional (paid or unpaid) days off work available to “<a href="https://doi.org/10.1007/978-3-030-53269-7_9">only and all cisgender women</a>”.</p>
<p>It’s so great that we’re having more public conversations about menstrual and menopausal health, but I’m getting very tired of being told that menstrual leave is the solution.</p>
<p>As someone with a background in policy evaluation and the founder of the world’s first evidence-based <a href="https://www.menstrual-matters.com/">menstrual health website</a>, I am well placed to comment on this topic. When I evaluated existing menstrual leave policies around the world, I found that they were not progressive or beneficial for <a href="https://doi.org/10.1007/978-3-030-53269-7_9">female reproductive health or gender equality</a>. </p>
<p>The thing is, it is really hard to argue against something that sounds good, even if the available evidence suggests otherwise. Humans seem to be bad at going beyond surface thoughts and we may even prefer stories that align with <a href="https://www.tandfonline.com/doi/abs/10.1080/1350178X.2014.939691">rather than challenge gender stereotypes</a>. </p>
<p>So, here is a quick outline of what I think you should know about this policy.</p>
<h2>What is the problem?</h2>
<p>There are <a href="https://doi.org/10.1007/978-3-030-53269-7_9">four main arguments</a> used by those promoting menstrual leave policy:</p>
<ol>
<li><p>It will make the workplace fit for the menstruating female body.</p></li>
<li><p>It will improve menstrual health.</p></li>
<li><p>It will reduce menstrual shame and stigma, and associated discrimination.</p></li>
<li><p>It will improve gender equality in the workplace and beyond. </p></li>
</ol>
<p>However, it has never been made clear exactly how the policy will deliver these outcomes. In fact, based on what we know about existing menstrual leave policies, it might not contribute to any of them.</p>
<hr>
<figure class="align-right ">
<img alt="Quarter life, a series by The Conversation" src="https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption"></span>
</figcaption>
</figure>
<p><strong><a href="https://theconversation.com/uk/topics/quarter-life-117947?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">This article is part of Quarter Life</a></strong>, a series about issues affecting those of us in our twenties and thirties. From the challenges of beginning a career and taking care of our mental health, to the excitement of starting a family, adopting a pet or just making friends as an adult. The articles in this series explore the questions and bring answers as we navigate this turbulent period of life._</p>
<p><em>You may be interested in:</em></p>
<p><em><a href="https://theconversation.com/five-important-things-you-should-have-learned-in-sex-ed-but-probably-didnt-202177?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">Five important things you should have learned in sex ed – but probably didn’t</a></em></p>
<p><em><a href="https://theconversation.com/postpartum-exercise-can-have-many-benefits-heres-how-to-do-it-safely-200388?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">Postpartum exercise can have many benefits – here’s how to do it safely</a></em></p>
<p><em><a href="https://theconversation.com/joy-can-help-us-be-better-at-work-heres-how-to-find-it-198260?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">Joy can help us be better at work – here’s how to find it</a></em></p>
<hr>
<p>For instance, the policy does not make it easier to manage your period at work because your employer doesn’t have to change a thing. Instead, you are encouraged to stay away from the workplace. </p>
<p>The policy also does nothing to improve menstrual health. The 90% of people who menstruate and <a href="https://abdn.alma.exlibrisgroup.com/discovery/delivery/44ABE_INST:44ABE_VU1/12152380480005941">do not regularly experience severe symptoms</a> do not need to take a whole day off work during their periods. </p>
<p>Meanwhile, the minority who do regularly experience severe symptoms almost always have <a href="https://www.rcog.org.uk/guidance/browse-all-guidance/green-top-guidelines/premenstrual-syndrome-management-green-top-guideline-no-48/">an underlying health issue</a>, such as endometriosis, heavy menstrual bleeding, polycystic ovary syndrome, fibroids, auto-immune disorders, depression or premenstrual dysphoric disorder. Encouraging people to cope with severe symptoms alone at home every month, is not an effective or humane solution.</p>
<p>These health conditions deserve effective and timely medical diagnosis and treatment, sick leave and reasonable workplace adjustments. The same things that apply to all chronic health conditions and are already covered by <a href="https://www.legislation.gov.uk/ukpga/2010/15/contents">EU and UK labour policies</a>. </p>
<p>Menstrual leave also does not help to reduce menstrual shame, stigma or discrimination. It actually encourages the removal of menstruation – and by extension women – from the public realm by hiding it at home.</p>
<p>This sex-based policy conflates healthy periods with debilitating menstrual health conditions, which both pathologises the normal female body and undermines health conditions that mainly affect women. This is partly why women and conditions that mainly affect women are <a href="https://doi.org/10.1155/2018/6358624">more likely to be dismissed by doctors</a>, sometimes taking <a href="https://www.medicalnewstoday.com/articles/gender-bias-in-medical-diagnosis#how-does-it-affect-diagnosis">years to get a formal diagnosis</a>.</p>
<p>Finally, by medicalising the menstrual cycle (that is, positioning it as an illness rather than a healthy process) these policies reinforce sexist beliefs that make it seem like all women are <a href="https://www.ncbi.nlm.nih.gov/books/NBK565629/">biologically inferior (mentally and physically)</a>. This is a major contributing factor in gender discrimination, especially in the workplace, since these ideas are <a href="http://www.beacon.org/Inferior-P1278.aspx">used to undermine</a> the value, contribution and leadership potential of women.</p>
<figure class="align-center ">
<img alt="A woman clutches a hot water bottle to her body." src="https://images.theconversation.com/files/519858/original/file-20230406-14-tzzphp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/519858/original/file-20230406-14-tzzphp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/519858/original/file-20230406-14-tzzphp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/519858/original/file-20230406-14-tzzphp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/519858/original/file-20230406-14-tzzphp.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/519858/original/file-20230406-14-tzzphp.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/519858/original/file-20230406-14-tzzphp.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Period leave policies keep menstruation at home where employers don’t have to deal with it.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/close-cropped-view-unhealthy-30s-woman-2113290665">Fizkes/Shutterstock</a></span>
</figcaption>
</figure>
<h2>Menstrual leave might even make things worse</h2>
<p>Not only have existing menstrual leave policies failed to address the problems they set out to solve, they have also directly resulted in <a href="https://www.menstrual-matters.com/ml-gender-4/">discrimination against female workers</a>. This is largely due to the gender myths reinforced by the policy. It makes all women seem like more expensive and less consistent and productive employees. It can also lead to a backlash from colleagues and employers <a href="https://books.google.co.uk/books/about/Periodic_Struggles.html?id=F5YvQwAACAAJ&redir_esc=y">against a sex-based benefit</a>.</p>
<p>We already know that shared parental leave (for parents regardless of gender) is a <a href="https://doi.org/10.2307/j.ctvfrxngh">more effective policy than maternity leave</a> (which is female sex-based). It improves the gender pay gap, women’s hiring, promotion and leadership opportunities, child health outcomes, fatherhood experiences and gender equality in wider society.</p>
<p>These improvements occur because the policy avoids the gender-based backlash associated with maternity leave. This backlash is driven by the conscious or unconscious resentment of, and associated discrimination against, working women due to a perceived unfair advantage (paid time off work) and/or biological liability (the female reproductive body). The <a href="https://www.menstrual-matters.com/ml-gender-4/">same issues</a> apply to menstrual and menopausal health workplace policies.</p>
<p>We need to improve workplace (and school, and medical) knowledge of reproductive health and wellbeing. We should all know <a href="https://www.menstrual-matters.com/learn-homepage/resources/">what’s normal</a> or the sign of an underlying health condition. Likewise, it’s shocking that some people do not know <a href="https://www.menstrual-matters.com/learn-homepage/resources/">why we menstruate</a> or how to reduce cyclical changes.</p>
<p>We also need to make <a href="https://www.bloodygoodemployers.com/">workplaces (including schools) fit for those who have periods</a> and to promote more <a href="https://www.menstrual-matters.com/ml-alternatives-5/">flexible and equitable work cultures and practices</a> that benefit all employees. For instance, challenging “presenteeism” if employees feel obliged to work even when feeling unwell, and ditching <a href="https://www.ndtv.com/feature/amazon-staff-in-uk-claims-their-toilet-breaks-were-timed-3727431">“timed” toilet breaks</a>. </p>
<p>While these <a href="https://www.menstrual-matters.com/ml-alternatives-5/">actions</a> are not quite as simple or catchy as “menstrual leave”, they would at least make a positive difference in the lives of millions of workers – without unintentionally worsening gender inequalities.</p><img src="https://counter.theconversation.com/content/199568/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sally King is the founder of Menstrual Matters. Her doctoral research was funded by the ESRC (Economic and Social Research Council). She is affiliated with the Women's Equality Party and a board member of the Society for Menstrual Cycle Research. </span></em></p>Sex-based policies can lead to backlash and further discrimination in the workplace.Sally King, PhD Candidate, Department of Global Health & Social Medicine, King's College LondonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2033052023-04-14T16:00:19Z2023-04-14T16:00:19ZEndometriosis: how the condition may be linked to the immune system<figure><img src="https://images.theconversation.com/files/521036/original/file-20230414-20-758qyg.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C6944%2C3783&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Endometriosis can cause a range of painful symptoms.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/endometriosis-disease-anatomy-concept-female-infertility-2145269393">Lightspring/ Shutterstock</a></span></figcaption></figure><p>Endometriosis is a debilitating condition which affects <a href="https://www.who.int/news-room/fact-sheets/detail/endometriosis">10% of women worldwide</a>. The condition can have a serious affect on a person’s quality of life, often causing a range of symptoms including chronic pain, fatigue and pain during sex.</p>
<p>Despite how common endometriosis is, most women wait on average <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">7.5 years</a> for a diagnosis in the UK. Not only does this mean many years without treatment, it also puts them at risk of even greater health problems. Untreated endometriosis can lead to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3825702/">organ damage</a> (including the uterus and bowels) and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941592/">infertility</a>.</p>
<p>There’s currently no cure for endometriosis. This may be due to how complex endometriosis is, affecting many different parts of the body – meaning researchers still don’t fully understand all the causes of the disease. </p>
<p>In the last few years, studies have found that the immune system is also affected by endometriosis. It’s still unclear whether the immune system causes endometriosis or is merely affected by it. But exploring this link could eventually lead to better targeted treatment for the condition.</p>
<h2>Inflammation and immunity</h2>
<p>To understand how our immune system and endometriosis are connected, it’s first important to understand an immune system process called inflammation.</p>
<p>Inflammation is a key feature of how our immune system works. When the body encounters a harmful pathogen (such as a virus or bacteria), our immune system is triggered. The body then secretes special proteins called cytokines, which tell our immune cells what to do.</p>
<p>The symptoms you experience as a result of inflammation will depend on the reason these cells have been mobilised. For example, if your inflammation is caused by a cut to your finger, you may find the area around the cut becomes hot, red and swollen as the immune system works to combat pathogens and repair the damage. If inflammation is caused by a virus, you might experience flu-like symptoms – such as a fever.</p>
<p>For the most part, inflammation is a short-term process. But sometimes the immune system gets things wrong, and your body continues to send inflammatory cells and cytokines even when there’s no threat. Autoimmune diseases such as rheumatoid arthritis are an example of this, where the body’s immune system continues to attack, leading to long-term inflammation in the joints.</p>
<figure class="align-center ">
<img alt="A digital image of a group of natural killer cells attacking a COVID cell." src="https://images.theconversation.com/files/521039/original/file-20230414-26-pffr0y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/521039/original/file-20230414-26-pffr0y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/521039/original/file-20230414-26-pffr0y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/521039/original/file-20230414-26-pffr0y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/521039/original/file-20230414-26-pffr0y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/521039/original/file-20230414-26-pffr0y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/521039/original/file-20230414-26-pffr0y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Natural killer cells are one type of immune cell which helps protect the body from harm.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/3d-render-illustration-natural-killer-body-1794879802">Numstocker/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Inflammation is also a normal feature of the menstrual cycle.</p>
<p>The normal menstrual cycle consists of two phases: the follicular phase (from the first day of the period until ovulation) and the luteal phase (from ovulation until your period starts). Most inflammation during the menstrual cycle happens in the uterus, but changes may also occur <a href="https://pubmed.ncbi.nlm.nih.gov/36883215/">throughout the body</a>.</p>
<p>During the follicular phase, there are increased levels of oestrogen circulating in the body. Oestrogen stimulates the lining of the uterus to thicken in preparation for a fertilised embryo.</p>
<p>But some immune cells have specific receptors which recognise oestrogen, causing them to initiate an <a href="https://pubmed.ncbi.nlm.nih.gov/22155200">immune response</a>. This readies the body to fight off any foreign invaders so it’s healthy for pregnancy, should fertilisation occur. As such, women will be less susceptible to infections during the follicular phase. However, women with autoimmune diseases may experience more symptoms at this stage.</p>
<p>But in order not to reject a fertilised egg, the immune system is then suppressed during the luteal phase – which may subsequently increase risk of infection, and cause relief from some autoimmune symptoms.</p>
<h2>Endometriosis and immunity</h2>
<p>Research has observed multiple immune system changes in people with endometriosis.</p>
<p>One study found patients with endometriosis had elevated inflammation levels (specifically higher levels of <a href="https://pubmed.ncbi.nlm.nih.gov/30367890/">cytokines</a>). Research has also shown that people with endometriosis have disturbed immune cell function – namely a specific type of immune cell called natural killer cells. </p>
<p>These have a vital role in fighting viruses and tumours, but research shows they <a href="https://www.frontiersin.org/articles/10.3389/fimmu.2021.711231/full">function more poorly</a> in people with endometriosis. The uterine lining in patients with endometriosis is also shown to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1858106/">produce excess molecules</a> called chemokines that attract other immune cells, worsening inflammation. </p>
<p>Again, it’s still not certain whether altered immune function causes endometriosis or is merely a symptom of the disease. But immune system dysfunction may explain why there’s a suspected association between people with endometriosis and <a href="https://pubmed.ncbi.nlm.nih.gov/31260048/">autoimmune disorders</a> such as lupus, rheumatoid arthritis and inflammatory bowel disease. </p>
<p>Elevated inflammation levels also mean that women with endometriosis may be more likely to experience worse symptoms during infections. For example, research has found that when patients with endometriosis catch COVID-19, their <a href="https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-021-01270-z">symptoms appear to be worse</a> than people who don’t have the condition. </p>
<p>COVID-19 may also <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9657778/pdf/ijms-23-12951.pdf">worsen endometriosis symptoms</a> – particularly pelvic pain, depression, fatigue and gastrointestinal issues. A <a href="https://pubmed.ncbi.nlm.nih.gov/36972892/">recent study</a> has also found that women with endometriosis were 22% more likely to suffer long COVID – and their long COVID symptoms may last longer.</p>
<p>While it’s currently not known how precisely the immune system is linked with endometriosis (and whether it causes the disease), working to further understand this relationship could be key in helping develop better treatments – or possibly even a cure – for endometriosis.</p>
<p>Research into this disease is still <a href="https://pubmed.ncbi.nlm.nih.gov/35620300/">severely under-funded</a>, and the time to diagnosis is far beyond what would be expected from other chronic conditions – such as asthma or diabetes. It’s clear that greater priority needs to be placed into researching endometriosis and its causes to help provide new insights and better treatment for the millions of women affected.</p><img src="https://counter.theconversation.com/content/203305/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>April Rees does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Further exploring this connection could potentially lead to better treatment of the condition.April Rees, Biochemistry Tutor, Swansea UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2006632023-03-30T14:58:35Z2023-03-30T14:58:35ZEndometriosis: black women continue to receive poorer care for the condition<figure><img src="https://images.theconversation.com/files/518149/original/file-20230329-18-egi54m.jpg?ixlib=rb-1.1.0&rect=0%2C9%2C6191%2C4105&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Untreated, endometriosis may lead to a range of health problems.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-african-american-woman-feeling-stomach-2080313062">Prostock-studio/ Shutterstock</a></span></figcaption></figure><p>Endometriosis is a common chronic <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(04)17403-5/fulltext">inflammatory condition</a> that affects an estimated one in ten people assigned female at birth. The condition causes tissue similar to the lining of the uterus to grow elsewhere – including on the ovaries, intestines, bladder and bowels. Symptoms can affect the whole body, but often include severe pelvic pain, painful periods, pain during sex, infertility and fatigue. </p>
<p>Sufferers of the condition wait between <a href="https://www.eshre.eu/Guideline/Endometriosis">eight to 12 years</a> on average for a diagnosis. Yet for black women, this picture is even worse – with research showing they’re <a href="https://www.ajog.org/article/S0002-9378(19)30322-9/fulltext">50% less likely</a> to be <a href="https://pubmed.ncbi.nlm.nih.gov/30908874">diagnosed with endometriosis</a> compared to white women.</p>
<p>There are a <a href="https://www.bmj.com/content/379/bmj.o3052.long">number of reasons</a> for why this is the case – including barriers to gynaecological care and systemic racism in the medical field. But this means that black women may suffer for many more years as a result without a proper diagnosis or treatment.</p>
<h2>Racial disparities</h2>
<p>The poorer care that black women receive today for conditions such as endometriosis may actually be linked back to the very beginnings of the field of gynaecology, which has a legacy of <a href="https://ugapress.org/book/9780820354750/medical-bondage/">racism and violent exploitation</a> of black women’s bodies.</p>
<p>For example, J Marion Sims, the 19th-century American doctor who invented the speculum, performed numerous experimental surgeries without anaesthetics on <a href="https://jme.bmj.com/content/medethics/19/1/28.full.pdf">enslaved women who could not consent</a> throughout his career. The reason Sims chose not to use anaesthetic was, in part, because he believed <a href="https://ugapress.org/book/9780820354750/medical-bondage/">black people had higher pain thresholds</a>. </p>
<p>The legacy of this racist myth still persists today. In the US, one study found white medical students and doctors still believe that black patients are biologically <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/">less sensitive to pain</a> compared to white patients. And, in the UK, a survey found that <a href="https://www.bmj.com/content/378/bmj.o2337">most black people</a> have experienced prejudice from healthcare professionals when it came to care – including practitioners dismissing their pain. </p>
<p>These biases may partly explain why health professionals, in the US at least, are less likely to provide black women with pain medication <a href="https://pubmed.ncbi.nlm.nih.gov/17197841/">during</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6905121/">after</a> childbirth. Research has also shown that patients of colour consistently receive <a href="https://www.sciencedirect.com/science/article/abs/pii/S1526590009007755">lower quality pain treatment</a> for many different conditions.</p>
<p>Racial disparities in pain treatment are also found in endometriosis care. In the UK, women with <a href="https://cultureandcompassion.com/wp-content/uploads/2015/04/Endometriosis-and-cultural-diversity.pdf">endometriosis from minority ethnic groups</a> are less likely to have their pain believed by clinicians. In the US, almost 72% of patients <a href="https://www.sciencedirect.com/science/article/pii/S0002937821007006?casa_token=kpIEVjkT6SYAAAAA:cY8dIfUhICTXAuLoJ-mBtzLYM5zC1evzXVUlDHhNSvypvpMH2w7B6CsEW0pNQIGZvy8PGHWwhw">diagnosed with endometriosis</a> are white and only around 5% are black. This discrepancy is staggering, especially considering there’s <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9066945/">no definitive evidence</a> endometriosis is more common in white patients. </p>
<figure class="align-center ">
<img alt="A young black woman speaks with a male doctor about her concerns." src="https://images.theconversation.com/files/518151/original/file-20230329-23-qr5yul.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/518151/original/file-20230329-23-qr5yul.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/518151/original/file-20230329-23-qr5yul.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/518151/original/file-20230329-23-qr5yul.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/518151/original/file-20230329-23-qr5yul.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/518151/original/file-20230329-23-qr5yul.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/518151/original/file-20230329-23-qr5yul.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Black women are less likely to be diagnosed with endometriosis.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/black-woman-visiting-hospital-female-patient-2087553199">Studio Romantic/ Shutterstock</a></span>
</figcaption>
</figure>
<p>The minority of black women who are diagnosed with endometriosis are diagnosed on average <a href="https://www.medrxiv.org/content/10.1101/2021.07.28.21261303v1.full">two and a half years later</a> than white women. Black women are also less likely to <a href="https://www.sciencedirect.com/science/article/pii/S0002937822000448">receive endometriosis surgery</a> – and if they do, are more likely to experience surgical complications afterwards.</p>
<p>The under-diagnosis of endometriosis in black patients was <a href="https://pubmed.ncbi.nlm.nih.gov/133613/">first identified in the 1970s</a>. Despite this, we still have <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9066945/">no reliable estimate</a> of how common endometriosis actually is in black women. This is due to an absence of quality research and the persistent misconception that endometriosis is a “<a href="https://www.routledge.com/The-Makings-of-a-Modern-Epidemic-Endometriosis-Gender-and-Politics/Seear/p/book/9780367078027">white career women’s disease</a>” and is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9066945/">rare in patients of colour</a>. </p>
<h2>Need for change</h2>
<p>This all not only means that black patients wait longer for endometriosis care – they’re less likely to receive care to begin with.</p>
<p>Undiagnosed endometriosis has potentially serious health consequences. Left untreated, endometriosis tissue may continue to grow, causing <a href="https://www.eshre.eu/Guideline/Endometriosis">organ damage</a> to the uterus, intestines, bladder and bowels. This can worsen already severe pelvic pain, and cause painful and extremely heavy periods, pain during sex, alongside bladder and bowel damage – which could lead to incontinence and bowel problems.</p>
<p>Endometriosis may also affect fertility. Almost <a href="https://pubmed.ncbi.nlm.nih.gov/18684448/">half of all cases of infertility in women</a> are potentially caused by endometriosis. <a href="https://www.sciencedirect.com/science/article/pii/S0015028217305393">Risks of pregnancy</a> complications (including <a href="https://www.endometriosis-uk.org/endometriosis-fertility-and-pregnancy">miscarriages</a>) are also higher – particularly when it isn’t known that a patient has endometriosis.</p>
<p>Endometriosis also affects <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7800443/">many aspects of a person’s life</a> – from school attendance and achievements, to relationships, career performance and financial earnings. Without proper care, risks of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7800443/">anxiety, low-self esteem and depression</a> are higher. In rare cases, the risk of <a href="https://academic.oup.com/aje/article/190/5/843/5979508?login=false">self-harm and suicide</a> are also higher for all those with endometriosis.</p>
<p>Much needs to change within the medical community to improve endometriosis and gynaecological care for black women. Mandatory training for health professionals on implicit racial bias, alongside dedicating funding to research investigating the prevalence and impact of endometriosis on black women are just a few of the things <a href="https://www.bmj.com/content/bmj/379/bmj.o3052.full.pdf">we recommend</a> to make this happen. Another shortcoming in relation to black women’s endometriosis care is that the majority of available evidence comes out of the US. This further highlights the need for more research into this area to fully understand what the picture is in other parts of the world.</p>
<p>Black women who suspect they have endometriosis can find resources from organisations like <a href="http://cysters.org/">Cysters</a>, the <a href="https://tapproject.co.uk/black-women-reproductive-health/">Black Women’s Reproductive Health Project</a>, <a href="https://www.endoblack.org/">EndoBlack</a> and the <a href="https://bwhi.org/">Black Women’s Health Imperative</a>. </p>
<p>Pain is not something you must suffer in silence. Keeping <a href="https://www.endometriosis-uk.org/sites/default/files/2022-08/pain-symptoms-diary_0.pdf">a diary of your pain and symptoms</a> you may have as well as a <a href="https://www.endometriosis-uk.org/seeing-endometriosis-specialist">list of questions</a> when talking to your GP.</p><img src="https://counter.theconversation.com/content/200663/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Danielle Perro is affiliated with The Black Women's Reproductive Health Project. </span></em></p><p class="fine-print"><em><span>Annalise Weckesser is affiliated with the Social SciencEs of Endometriosis Network. </span></em></p><p class="fine-print"><em><span>Véronique Griffith receives funding from the British Academy. She is affiliated with the Social SciencEs of Endometriosis Network.</span></em></p>Black women are half as likely to be diagnosed with endometriosis compared to white women.Danielle Perro, Postdoctoral Researcher, Nuffield Department of Women's and Reproductive Health, University of OxfordAnnalise Weckesser, Reader in Medical Anthropology, Birmingham City UniversityVeronique Griffith, Lecturer in Healthcare Sciences, University of ManchesterLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1985142023-03-12T01:45:54Z2023-03-12T01:45:54Z‘Are you telling me it’s all in my head?’ Endometriosis in the Australian press in the 1970s<figure><img src="https://images.theconversation.com/files/506753/original/file-20230127-21-8bkncn.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2562%2C2016&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/queenslandstatearchives/25943372337/"> Queensland State Archives</a></span></figcaption></figure><p>In 1974, Woroni, the student magazine of the Australian National University, published <a href="https://trove.nla.gov.au/newspaper/article/134398222">an article</a> looking at the lives of lesbians at the university.</p>
<p>One contributor, “Jody”, told of her experience with a doctor who pressured her for details on how she has sex, and who didn’t believe her reports of pain, suggesting it may be “in her head”. </p>
<p>Jody recounted asking the doctor:</p>
<blockquote>
<p>‘Are you telling me that I didn’t get endometriosis from a rotten abortion six years ago, that it’s all in my head?’ He quickly retreated and admitted that he knew I had endometriosis and that wasn’t psychological.</p>
</blockquote>
<p>It’s important to state categorically you <a href="https://endometriosis.org/news/opinion/abortion-does-not-cause-endometriosis/">cannot get endometriosis from an abortion</a>, despite what Jody believes caused her endometriosis. </p>
<p>But beliefs like this weren’t alone in the Australian press in the 1970s. It appears from both Jody’s story, and from another <a href="https://nla.gov.au/nla.obj-681769361/view?partId=nla.obj-681830058#page/n50/mode/1up">article</a> published in the 1960s, it may have been public opinion abortions could result in endometriosis.</p>
<p>As an academic and sufferer of endometriosis, I wanted to know what the history was behind my own disease. How long ago did we start talking about endometriosis?</p>
<p>I went looking in the <a href="https://trove.nla.gov.au/">Trove archive</a> to see how long endometriosis has been talked about in Australian newspapers and magazines, and how it was being written about. The earliest article <a href="https://journals.sagepub.com/doi/10.1177/1329878X221145974">I found</a> was from 1949, but the 1970s was the first decade we saw endometriosis really being discussed by name in newspapers and magazines.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/you-no-longer-need-surgery-to-be-diagnosed-with-endometriosis-heres-whats-changed-180246">You no longer need surgery to be diagnosed with endometriosis. Here's what's changed</a>
</strong>
</em>
</p>
<hr>
<h2>What is endometriosis?</h2>
<p>Endometriosis is a condition in which tissue similar to the lining of the uterus grows outside the uterus, around other parts of the body. </p>
<p>It affects more than <a href="https://www.endometriosisaustralia.org/">830,000 Australians</a> and costs Australia <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223316">$9.7 billion annually</a> in direct medical costs and in lost productivity.</p>
<p>Despite these numbers, many people still <a href="https://pubmed.ncbi.nlm.nih.gov/20235893/">don’t know</a> about endometriosis.</p>
<p>Historical texts suggest endometriosis has been around for a very long time. Its most common symptoms of pelvic pain, adhesions and infertility were written about as far back as <a href="https://www.fertstert.org/article/S0015-0282(12)01955-3/fulltext">1855 BCE</a>.</p>
<p>Doctors were able to identify the disease microscopically in 1860, and it was named endometriosis in 1927 by gynaecologist John Sampson.</p>
<h2>A 'frequently occurring’ disease</h2>
<p>I was able to find 12 articles mentioning endometriosis in the Australian popular press of the 1970s. Compared with earlier decades, the disease was now being talked about in personal stories alongside comments from experts. </p>
<p>Endometriosis was often talked about as a comorbidity to infertility, with other symptoms such as pain taking a backseat. Medical experts were the most common people quoted in articles.</p>
<p>Leading up to the 1970s, medical research into endometriosis had established it could grow on the lungs, <a href="https://www.sciencedirect.com/science/article/pii/S0002937816418843">lymph nodes</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1561537/">the bowels</a>, among other organs. Treatment for the disease during this time was often hormonal therapies, excisions or hysterectomies.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Vintage photo: nurses in an operating theatre" src="https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=454&fit=crop&dpr=1 600w, https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=454&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=454&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=571&fit=crop&dpr=1 754w, https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=571&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/506750/original/file-20230127-15-w1cdy8.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=571&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Hysterectomies was one of the treatment options for endometriosis.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/queenslandstatearchives/34196999400/in/photolist-U6SyvW-UusTEZ-LLKjiH-YbcXEi-2eyFsYr-FRNAkz-XgUyFJ-26fYPC9-dVXM8g-LRQaS5-dVXHeF-29TR4w2-YbcE7H-22GSfea-WsU5m8-HZuwiR-YoDGr2-CGoiLN-2kSXEqA-Y8vL1E-XacgrP-22EsB6S-2mn6Yoy-L439KT-X5QCAC-2krnafM-dUUT8S-2kNDgUn-2kJQ7bS-22EsARd-22EsCxE-XbPPcw-24yCUd8-a4L7hJ-2kNDgVu-L24QqX-2gzLjwr-2mncjxx-2mnoCcX-2mneWjz-a4EoTn-2mnckvp-2gwG2D9-2mnjM7e-VJqGDH-a8T1Sh-WritMh-2mnpTcX-2mnstQX-2mntApC">Queensland State Archives</a></span>
</figcaption>
</figure>
<p>During the 1970s in Australia, news was circulating about Danocrine (also known as <a href="https://endometriosis.org/treatments/danazol/">Danazol</a>) – a hormonal treatment to combat menstruation pain. Both <a href="https://trove.nla.gov.au/newspaper/article/131858307">The Canberra Times</a> and the <a href="https://trove.nla.gov.au/newspaper/article/51593947">Australian Women’s Weekly</a> wrote about this “capsule that could end menstrual pain”.</p>
<p>A 1975 <a href="https://trove.nla.gov.au/newspaper/article/43721489?browse=ndp%3Abrowse%2Ftitle%2FA%2Ftitle%2F112%2F1975%2F01%2F29%2Fpage%2F4468731%2Farticle%2F43721489">feature story</a> in Australian Women’s Weekly presented a couple who sought to have a baby under difficult medical circumstances, including endometriosis. The narrative used in the story is one of fertility “miracles” and impossible odds to clear to become a mother:</p>
<blockquote>
<p>When a Sydney girl was told that, because of her medical history, it was unlikely she could ever have a child, she and her husband began talking of adopting – until the unbelievable happened. She became pregnant.</p>
</blockquote>
<p>The relationship between pregnancy and endometriosis has a long history, and frequently appeared together in the articles I found. Pregnancy as a cure or symptom suppressor has been around since the Ancient Greeks. Indeed, the first mention I found of endometriosis in the Australian press, <a href="https://trove.nla.gov.au/newspaper/article/146737743">an article</a> in Catholic Weekly in 1949, touted pregnancy as the only nonsurgical and “conservative” option for treatment.</p>
<p>(Despite medical research saying pregnancy is <a href="https://theconversation.com/pregnancy-doesnt-cure-endometriosis-so-where-does-this-advice-come-from-88951">not a cure</a> for endometriosis, patients are reporting GPs are still “prescribing” pregnancy in the incorrect belief it relieves symptoms or even cures the disease outright.)</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A mother and two children at a beach." src="https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=439&fit=crop&dpr=1 600w, https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=439&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=439&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=552&fit=crop&dpr=1 754w, https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=552&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/506754/original/file-20230127-26-7nsutr.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=552&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Pregnancy was often cited as a ‘treatment’, but the science doesn’t support this view.</span>
<span class="attribution"><a class="source" href="https://www.flickr.com/photos/queenslandstatearchives/34196999400/in/photolist-U6SyvW-UusTEZ-LLKjiH-YbcXEi-2eyFsYr-FRNAkz-XgUyFJ-26fYPC9-dVXM8g-LRQaS5-dVXHeF-29TR4w2-YbcE7H-22GSfea-WsU5m8-HZuwiR-YoDGr2-CGoiLN-2kSXEqA-Y8vL1E-XacgrP-22EsB6S-2mn6Yoy-L439KT-X5QCAC-2krnafM-dUUT8S-2kNDgUn-2kJQ7bS-22EsARd-22EsCxE-XbPPcw-24yCUd8-a4L7hJ-2kNDgVu-L24QqX-2gzLjwr-2mncjxx-2mnoCcX-2mneWjz-a4EoTn-2mnckvp-2gwG2D9-2mnjM7e-VJqGDH-a8T1Sh-WritMh-2mnpTcX-2mnstQX-2mntApC">Queensland State Archives</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc-nd/4.0/">CC BY-NC-ND</a></span>
</figcaption>
</figure>
<p>The Australian Women’s Weekly appeared often in my data collection. The magazine did not shy away from talking about topics like the <a href="https://trove.nla.gov.au/newspaper/article/48083595">contraceptive pill</a>, infertility and <a href="https://trove.nla.gov.au/newspaper/article/55478310">hysterectomies</a>. The magazine published three separate articles on hysterectomies during the 1970s, reassuring readers they’d still be “<a href="https://trove.nla.gov.au/newspaper/article/47123393">all woman</a>”.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/pregnancy-doesnt-cure-endometriosis-so-where-does-this-advice-come-from-88951">Pregnancy doesn't 'cure' endometriosis, so where does this advice come from?</a>
</strong>
</em>
</p>
<hr>
<h2>Learning from our past</h2>
<p>What can we learn from historical news articles? In my opinion, a great deal.</p>
<p>Press coverage of diseases plays a huge role in the public’s understanding of a disease. By better understanding how endometriosis was perceived in previous decades, we can identify useful patterns of reporting and make sure the information presented on the disease today is accurate and helpful.</p>
<p>Today, media coverage about endometriosis is more likely to look at endometriosis through new lenses such as its <a href="https://www.abc.net.au/news/2022-03-17/learning-to-live-with-disability-and-anxiety/100907442">chronic pain</a>, <a href="https://www.abc.net.au/news/2022-08-25/australians-using-super-retirement-savings-pay-health-costs/101368246">the cost of treatments</a> and <a href="https://www.abc.net.au/news/2019-10-11/skyrocketing-costs-for-women-with-endometriosis/11593516">loss of productivity</a>. </p>
<p>And unlike in the 1970s, where medical voices were the primary source, now the patient’s voice is front and centre in these stories.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/endometriosis-costs-women-and-society-30-000-a-year-for-every-sufferer-124975">Endometriosis costs women and society $30,000 a year for every sufferer</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/198514/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Erin Bradshaw is a part of a research team that receives ARC funding. Bradshaw spent a month with the Conversation on an editorial internship in 2012</span></em></p>As an academic and sufferer of endometriosis, I wanted to know what the history was behind my own disease.Erin Bradshaw, Research Assistant, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1969432023-02-22T19:04:16Z2023-02-22T19:04:16ZGastro or endometriosis? How your GP discusses uncertainty can harm your health<figure><img src="https://images.theconversation.com/files/507527/original/file-20230201-23-1odtda.jpg?ixlib=rb-1.1.0&rect=2%2C5%2C1914%2C1270&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.pexels.com/photo/woman-suffering-from-a-stomach-pain-lying-down-on-couch-5938365/">Sora Shimazaki/Pexels</a></span></figcaption></figure><p>You wake with stomach pain that worsens during the day and decide to see your doctor. You describe your symptoms and your doctor examines you. Then the doctor says, “From what I hear, I think you could just have a stomach bug. Rest and come back in three days.”</p>
<p>This might be a less definitive answer than you’re after. But doctors can’t always be sure of a diagnosis straight away. As <a href="https://link.springer.com/article/10.1007/s11606-022-07768-y">my review</a> shows, doctors use various ways of communicating such uncertainty.</p>
<p>Sometimes there is a mismatch between what doctors say when they’re uncertain and how patients interpret what they say, which can have harmful consequences.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/missed-something-the-doctor-said-recording-your-appointments-gives-you-a-chance-to-go-back-112302">Missed something the doctor said? Recording your appointments gives you a chance to go back</a>
</strong>
</em>
</p>
<hr>
<h2>Why does uncertainty matter?</h2>
<p>Doctors <a href="https://link.springer.com/article/10.1007/s11606-017-4164-1">cannot always explain</a> what your health problem is or what caused it. Such diagnostic uncertainty is a normal and <a href="https://doi.org/10.1001/jama.2022.2141">ever-present part</a> of the processes leading to a diagnosis. For instance, doctors often have to rule out other possible diagnoses before settling on one that’s most likely.</p>
<p>While doctors ultimately get the diagnosis right <a href="http://dx.doi.org/10.1136/bmjqs-2012-001615">in 85-90%</a> of cases, diagnostic uncertainty can lead to diagnostic delays and is a huge contributor to harmful or even deadly misdiagnoses.</p>
<p>Every year, <a href="https://www.mja.com.au/system/files/issues/213_07/mja250771.pdf">an estimated</a> 21,000 people are seriously harmed and 2,000-4,000 people die in Australia because their diagnosis was delayed, missed or wrong. That could be because the wrong treatment was provided and caused harm, or the right treatment was not started or given after the condition had already considerably progressed. More than <a href="https://www.mja.com.au/system/files/issues/213_07/mja250771.pdf">80% of diagnostic errors</a> could have been prevented. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C1000%2C663&q=45&auto=format&w=1000&fit=clip"><img alt="Doctor with stethoscope around neck talking to patient" src="https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&rect=0%2C1%2C1000%2C663&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/502507/original/file-20221222-21-2rjrbe.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Diagnostic uncertainty is a huge contributor to harmful or even deadly misdiagnoses.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/crop-close-woman-doctor-prescribe-treatment-1930965026">Shutterstock</a></span>
</figcaption>
</figure>
<p>Three medical conditions – infections, cancer and major vascular events (such as strokes or heart attacks) – are the so-called “<a href="https://doi.org/10.1515/dx-2019-0019">Big Three</a>” and cause devastating harm if misdiagnosed.</p>
<p>In my review, the top three symptoms – fever, chest pain and abdominal pain – were most often linked to diagnostic uncertainty. In other words, most of us will have had at least one of these very common symptoms and thus been at risk of uncertainty and misdiagnosis.</p>
<p>Some groups are less likely to be diagnosed correctly or without inappropriate delay than others, leading to <a href="https://doi.org/10.1001/jama.2022.7252">diagnostic inequities</a>. This may be the case for <a href="https://www.liebertpub.com/doi/10.1089/whr.2022.0052">women</a>, and other groups marginalised because of their <a href="https://onlinelibrary.wiley.com/doi/10.1111/acem.14142">race or ethnicity</a>, <a href="https://doi.org/10.1016/j.socscimed.2020.113609">sexual orientation or gender identity</a>, or <a href="https://doi.org/10.1001/jama.2022.7252">language proficiency</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-your-doctor-describes-your-medical-condition-can-encourage-you-to-say-yes-to-surgery-when-there-are-other-options-157958">How your doctor describes your medical condition can encourage you to say 'yes' to surgery when there are other options</a>
</strong>
</em>
</p>
<hr>
<h2>How often do you hear ‘I don’t know’?</h2>
<p>My research showed doctors often make diagnostic uncertainty clear to patients by using explicit phrases such as: “I don’t know.”</p>
<p>But doctors can also keep quiet about any uncertainty or signal they’re uncertain in more subtle ways.</p>
<p>When doctors believe patients prefer clear answers, they may only share the most likely diagnosis. They say: “It’s a stomach bug” but leave out, “it could also be constipation, appendicitis or endometriosis”. </p>
<p>Patients leave thinking the doctor is confident about the (potentially correct or incorrect) diagnosis, and remain uninformed about possible other causes. </p>
<p>This can be especially frustrating for patients with chronic symptoms, where such knowledge gaps can lead to lengthy diagnostic delays, as reported for <a href="https://doi.org/10.1016/j.ajog.2018.12.039">endometriosis</a>.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1064608335217942528"}"></div></p>
<p>Subtle ways of communicating uncertainty include hedging with certain words (could, maybe) or using introductory phrases (my guess, I think). Other implicit ways are consulting a colleague or the Internet, or making follow-up appointments.</p>
<p>If patients hear “I think this could be a stomach bug” they may think there’s some uncertainty. But when they hear “come back in three days” the uncertainty may not be so obvious.</p>
<p>Sharing uncertainty implicitly (rather than more directly), can leave patients unaware of new symptoms signalling a dangerous change in their condition.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/1-in-10-women-are-affected-by-endometriosis-so-why-does-it-take-so-long-to-diagnose-141803">1 in 10 women are affected by endometriosis. So why does it take so long to diagnose?</a>
</strong>
</em>
</p>
<hr>
<h2>What can you do about it?</h2>
<p><strong>1. Ask about uncertainty</strong></p>
<p>Ask your doctor to share any <a href="http://dx.doi.org/10.1515/dx-2021-0086">uncertainty and other diagnostic reasoning</a>. Ask about alternative diagnoses they’re considering. If you’re armed with such knowledge, you can better engage in your care, for example asking for a review when your symptoms worsen.</p>
<p><strong>2. Manage expectations together</strong></p>
<p>Making a diagnosis can be an evolving process rather than a single event. So ask your doctor to outline the diagnostic process to help manage any <a href="http://dx.doi.org/10.1136/ebm.14.3.66">mismatched expectations</a> about how long it might take, or what might be involved, to reach a diagnosis. Some conditions need time for symptoms to evolve, or further tests to exclude or confirm.</p>
<p><strong>3. Book a long appointment</strong></p>
<p>When we feel sick, we might get anxious or find we experience heightened levels of fear and other emotions. When we hear our doctor isn’t certain about what’s causing our symptoms, we may get even more anxious or fearful.</p>
<p>In these cases, it can take time to discuss uncertainty and to learn about our options. So book a long appointment to give your doctor enough time to explain and for you to ask questions. If you feel you’d like some support, you can ask a close friend or family member to attend the appointment with you and to take notes for you.</p>
<hr>
<p><em>I acknowledge the contribution of patient advocate Jen Morris and GP Marisa Magiros to this article. The systematic review mentioned was co-authored by Maria Dahm, William Cattanach, Maureen Williams, Jocelyne Basseal, Kelly Gleason and Carmel Crock</em>.</p><img src="https://counter.theconversation.com/content/196943/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Maria R. Dahm receives funding from the Australian Research Council and the Society to Improve Diagnosis in Medicine. She is affiliated with the Australian New Zealand affiliate of the Society to Improve Diagnosis in Medicine. </span></em></p>Doctors don’t always tell you they’re unsure what’s behind common symptoms, such as a stomach ache. And that can have serious effects.Maria R. Dahm, ARC DECRA and Senior Research Fellow in Health Communication, Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1825092022-11-18T01:52:14Z2022-11-18T01:52:14ZI’m thinking of surgery for endometriosis. What’s involved? Does it work?<figure><img src="https://images.theconversation.com/files/477574/original/file-20220804-14-nayufl.jpg?ixlib=rb-1.1.0&rect=24%2C0%2C5439%2C3620&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/woman-painful-expression-holding-hands-against-1518190793">Shutterstock</a></span></figcaption></figure><p>Endometriosis is a painful condition caused by the presence of tissue similar to the lining of the uterus found outside the uterus. It affects <a href="https://pubmed.ncbi.nlm.nih.gov/32757329/">around one in nine women</a> and people assigned female at birth.</p>
<p><a href="https://www.nature.com/articles/s41598-020-73389-2">Common symptoms</a> include painful periods, pelvic pain, fatigue, pain with sexual intercourse, pain while urinating or passing bowel motions, and infertility.</p>
<p>While mild endometriosis involves superficial deposits on or around the reproductive organs, severe endometriosis causes nodules and adhesions – bands of scarring that can attach organs to each other.</p>
<p>There’s currently no known cure for endometriosis. Symptoms can be managed with <a href="https://doi.org//10.1002/14651858.CD011031.pub3">surgery</a>, medications, hormonal treatments, pelvic physiotherapy and complementary therapies such as acupuncture.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/you-no-longer-need-surgery-to-be-diagnosed-with-endometriosis-heres-whats-changed-180246">You no longer need surgery to be diagnosed with endometriosis. Here's what's changed</a>
</strong>
</em>
</p>
<hr>
<h2>What happens during surgery?</h2>
<p>Endometriosis surgery is usually performed by laparoscopy or keyhole surgery. Most people will have a camera inserted through the belly button and three to four other incisions (about half a centimetre across) for other instruments to cut, grab, burn and hold.</p>
<p>The first step is to look around for abnormalities. Surgeons will look for endometriosis in the pelvis, abdomen, and under the diaphragm. They will look in, around and under every possible fold of tissue.</p>
<p><a href="https://doi.org//10.1002/14651858.CD011031.pub3">Surgeons use</a> two different techniques to treat endometriosis:</p>
<p>1) <strong>excision</strong> involves cutting out endometriosis. The aim is to remove as much of the visible endometriosis as possible and repair any damage it may have caused. Excised lesions can be examined under a microscope to see if endometrial-like cells are present to confirm diagnosis, which is not possible with ablation</p>
<p>2) <strong>ablation</strong> attempts to destroy the endometriosis where it lies, using heat energy.</p>
<figure class="align-center ">
<img alt="Woman holder her belly, which has dressings from a laparoscopy" src="https://images.theconversation.com/files/495763/original/file-20221116-18-tht0wu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/495763/original/file-20221116-18-tht0wu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=386&fit=crop&dpr=1 600w, https://images.theconversation.com/files/495763/original/file-20221116-18-tht0wu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=386&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/495763/original/file-20221116-18-tht0wu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=386&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/495763/original/file-20221116-18-tht0wu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=485&fit=crop&dpr=1 754w, https://images.theconversation.com/files/495763/original/file-20221116-18-tht0wu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=485&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/495763/original/file-20221116-18-tht0wu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=485&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Small incisions are made in the patient’s abdomen for the camera and instruments.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/bandaid-on-stomach-abdomen-after-laparoscopy-1646031907">Shutterstock</a></span>
</figcaption>
</figure>
<p>Since most surgeries are laparoscopic, many centres discharge patients home on the same day.</p>
<p>Recovery after surgery varies. Within a few weeks, some people are back to relatively regular activities like work, household duties, and socialising. Most people who have laparoscopic surgery will feel almost back to normal by six weeks after their operation.</p>
<h2>Which surgical technique is better?</h2>
<p><a href="http://dx.doi.org/10.1016/j.jmig.2014.04.002">Some evidence</a> suggests excision surgery may be better than ablation at reducing pain during sexual intercourse.</p>
<p>However, overall, <a href="https://doi.org/10.1016/j.jmig.2020.11.028">several</a> <a href="https://doi.org/10.1002/14651858.CD011031.pub3">recent</a> meta-analyses (a type of study that combines the results of many clinical trials) concluded there is little-to-no difference in most symptoms between ablation and excision at 12 months after surgery. </p>
<p>Many surgeons use excision, as this can remove the lesions as completely as possible. However, there may be circumstances where the lesions may be more suitably treated with ablation – for instance, to remove endometriosis on the surface of the uterus, ovary or fallopian tube – where excision may cause more harm.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/i-have-painful-periods-could-it-be-endometriosis-101026">I have painful periods, could it be endometriosis?</a>
</strong>
</em>
</p>
<hr>
<h2>How effective is surgery?</h2>
<p>Clinical guidelines in <a href="https://ranzcog.edu.au/resources/endometriosis-clinical-practice-guideline/">Australia and New Zealand</a> and <a href="https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline.aspx">Europe</a> recommend laparoscopic surgery be offered as one way to <a href="https://doi.org/10.1093/hropen/hoac009">reduce pain</a> from endometriosis. This is based on evidence that it successfully reduces pain. However, the current quality of evidence assessing the effectiveness of surgery in reducing pain is low because the studies were small and didn’t follow participants for long.</p>
<p>For treating infertility, there may be some <a href="https://www.sciencedirect.com/science/article/pii/S1553465019312075">benefit</a> to surgically treating endometriosis, but it’s impossible to say exactly <a href="https://www.jmig.org/article/S1553-4650(19)31276-2/fulltext">how much</a>.</p>
<p>Often, people may seek assisted reproductive therapies (ART) such as IVF. However, there is little research comparing whether surgery or IVF is more effective at achieving the goal of a live birth.</p>
<p>The <a href="https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/aogs.13152">risks</a> and benefits of surgery and ART differ based on the individual circumstances.</p>
<figure class="align-center ">
<img alt="Woman holds pregnancy test" src="https://images.theconversation.com/files/495765/original/file-20221116-13-r4bx4y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/495765/original/file-20221116-13-r4bx4y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/495765/original/file-20221116-13-r4bx4y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/495765/original/file-20221116-13-r4bx4y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/495765/original/file-20221116-13-r4bx4y.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/495765/original/file-20221116-13-r4bx4y.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/495765/original/file-20221116-13-r4bx4y.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Women with endometriosis may use IVF to conceive.</span>
<span class="attribution"><a class="source" href="https://www.pexels.com/photo/hands-holding-pregnancy-test-kit-6473742/">Cottonbro Studio/Pexels</a></span>
</figcaption>
</figure>
<h2>What happens after surgery?</h2>
<p>After the recovery period, patients will be able to assess how their symptoms have changed.</p>
<p>They may need to continue to use or start other strategies to manage pain. While surgery can reduce inflammation pain associated with endometriosis lesions, it may be less effective for treating pain from the pelvic floor muscles that may be short, tight, or tender. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/considering-surgery-for-endometriosis-heres-what-you-need-to-know-102254">Considering surgery for endometriosis? Here's what you need to know</a>
</strong>
</em>
</p>
<hr>
<p>In some people, endometriosis symptoms resolve after surgery, then sometimes return. <a href="https://doi.org/10.1016/j.fertnstert.2005.08.028">After</a> <a href="https://doi.org/10.1016/j.jpag.2011.06.012">five years</a>, 15-56% <a href="https://doi.org/10.1093/humrep/deg275">of</a> <a href="https://doi.org/10.1097/gco.0b013e32833bea15">people</a> who had surgery for endometriosis experience a recurrence of symptoms.</p>
<p>This may be due to new lesions developing or growth of residual <a href="https://doi.org/10.1080/13625187.2019.1662391">disease</a> if the previous endometriosis lesions were not completely removed, were overlooked or not detected.</p>
<p>In some cases, it may be due to other gynaecological conditions. Or it may represent a change in the nervous system, often due in part to endometriosis, called central sensitisation.</p>
<p>Part of the problem is the definition of “recurrence” is <a href="https://doi.org/10.1080/13625187.2019.1662391">inconsistent</a> and ranges from pain symptoms returning (with an assumption they must be due to endometriosis recurring) to endometriosis lesions actually being seen again (by imaging or repeat surgery). </p>
<p>Ultimately, any health decision is an intimately personal decision and people have to weigh the pros and cons after speaking with their doctors.</p><img src="https://counter.theconversation.com/content/182509/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mike Armour is affiliated with Endometriosis Australia. He reports funding from Endometriosis Australia and the Medical Research Futures Fund, outside this work. </span></em></p><p class="fine-print"><em><span>Cecilia Ng receives funding from the Medical Research Future Fund. </span></em></p><p class="fine-print"><em><span>Mathew Leonardi reports grants from Endometriosis Australia, AbbVie, CanSAGE, Medical Research Future Fund, Hamilton Health Sciences, Hyivy; honoraria for lectures/writing from GE Healthcare, Bayer, AbbVie, TerSera, affiliations with Imagendo, outside the submitted work. </span></em></p>Surgery is one option to treat endometriosis. Here’s what’s involved.Mike Armour, Senior research fellow in reproductive health at NICM Health Research Institute, Western Sydney UniversityCecilia Ng, Adjunct Senior Lecturer, Clinical Trials Network Manager, UNSW SydneyMathew Leonardi, Gynaecological Surgeon and Sonologist, McMaster University; Adjunct Lecturer, University of Adelaide, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1802462022-06-05T20:02:06Z2022-06-05T20:02:06ZYou no longer need surgery to be diagnosed with endometriosis. Here’s what’s changed<figure><img src="https://images.theconversation.com/files/462151/original/file-20220510-12-ou0owr.jpg?ixlib=rb-1.1.0&rect=85%2C38%2C5090%2C3406&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-upset-unhappy-woman-suffering-menstruation-1357975778">Shutterstock</a></span></figcaption></figure><p>By age 44, endometriosis affects around <a href="https://www.ncbi.nlm.nih.gov/pubmed/32757329">one in nine women</a> and people assigned female at birth in Australia.</p>
<p>It’s caused by the presence of tissue similar to the lining of the uterus found outside the uterus. While endometriosis is most commonly found in the pelvic cavity, it can sometimes be found in the diaphragm, lungs and elsewhere. </p>
<p>Symptoms include severe period pain, pain below the belly button when not menstruating, fatigue, digestive problems (often mistaken for irritable bowel syndrome), pain with bowel motions and/or urination, painful intercourse, and infertility. </p>
<p>It previously took, on average, <a href="https://www.ncbi.nlm.nih.gov/pubmed/33050751">6.4</a>-<a href="https://www.nature.com/articles/s41598-020-73389-2">8 years</a> for endometriosis to be diagnosed with surgery. But with doctors now able to give a clinical diagnosis of “suspected endometriosis” based on symptoms and a physical examination, the time to diagnosis is likely to reduce. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/endometriosis-can-end-womens-careers-and-stall-their-education-thats-everyones-business-179846">Endometriosis can end women's careers and stall their education. That's everyone's business</a>
</strong>
</em>
</p>
<hr>
<h2>Why diagnose endo through surgery?</h2>
<p>Endometriosis has <a href="https://obgyn.onlinelibrary.wiley.com/doi/10.1002/uog.24892">historically been diagnosed</a> through surgery. When performed by a skilled surgeon, this is still the <a href="https://obgyn.onlinelibrary.wiley.com/doi/10.1111/1471-0528.16865">most accurate</a> method of diagnosis. </p>
<p>The most common surgical procedure for endometriosis is laparoscopy (or key-hole surgery). A thin telescope (called a laparoscope) is inserted into the belly button to see and access the organs inside the abdomen and pelvis. </p>
<p>Ideally, when the surgeon sees abnormal tissue during the procedure, they biopsy or remove a sample and send it to a lab. The pathologist then looks for endometrial-like cells under a microscope to provide confirmation of endometriosis. Occasionally, what a surgeon sees is not confirmed to be endometriosis but something else or normal tissue. </p>
<figure class="align-center ">
<img alt="A woman with dressings from a laparoscopy holds her tummy." src="https://images.theconversation.com/files/464919/original/file-20220524-43418-hp61rt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/464919/original/file-20220524-43418-hp61rt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=386&fit=crop&dpr=1 600w, https://images.theconversation.com/files/464919/original/file-20220524-43418-hp61rt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=386&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/464919/original/file-20220524-43418-hp61rt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=386&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/464919/original/file-20220524-43418-hp61rt.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=485&fit=crop&dpr=1 754w, https://images.theconversation.com/files/464919/original/file-20220524-43418-hp61rt.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=485&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/464919/original/file-20220524-43418-hp61rt.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=485&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Sometimes endo will be diagnosed and treated in the same surgery, but this isn’t always the case.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/bandaid-on-stomach-abdomen-after-laparoscopy-1646031907">Shutterstock</a></span>
</figcaption>
</figure>
<p>The endometriosis might be fully treated during that same diagnostic surgical procedure, or it might be incompletely treated or not treated at all. This depends on the extent of the endometriosis and the surgical skill of the surgeon, among other things.</p>
<p>Overall, surgery to remove endometriosis is effective in relieving <a href="https://pubmed.ncbi.nlm.nih.gov/31676397/">pain symptoms</a>, reducing <a href="https://doi.org/10.1093/hropen/hoac009">infertility</a> and improving <a href="https://doi.org/10.5301%2Fje.5000187">quality of life</a>. </p>
<p>However surgery is a very expensive way to achieve a diagnosis, both for the patient and the health system.</p>
<p>Laparoscopic surgery also comes with the risks of infection, major bleeding, and injury to important structures like the bowels or bladder. Recovery takes about four weeks. </p>
<h2>How is the diagnostic process changing?</h2>
<p><a href="https://doi.org/10.1016/j.ajog.2018.12.039">Some experts have argued</a> surgery shouldn’t be used as a diagnostic test. This has prompted a move in recent years towards a “<a href="https://doi.org/10.1016/j.ajog.2018.12.039">clinical diagnosis</a>”, where a doctor makes an assessment based on symptoms and/or abnormal findings during a physical examination. </p>
<p>For most people, endometriosis symptoms begin with cyclical pain with their periods. That pain process evolves and pain can exist every day, with bowel motions or urination (often worse during the period), and during intercourse. </p>
<p>On physical examination, the doctor can sometimes feel endometriosis nodules in the vagina with the tips of their fingers. The lack of movement of the uterus as the doctor tries to move it with two hands may also raise suspicion, as can tenderness during this examination. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/considering-surgery-for-endometriosis-heres-what-you-need-to-know-102254">Considering surgery for endometriosis? Here's what you need to know</a>
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</em>
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<hr>
<p>There are <a href="https://doi.org/10.1177%2F228402651000200303">some drawbacks</a> to clinical diagnosis. Most notably, the wrong diagnosis may lead a person down an incorrect treatment plan, inevitably delaying treatment for the true diagnosis. </p>
<p>People who receive a clinical diagnosis may also feel less able to access surgery, if that’s their preferred treatment, as a clinical diagnosis usually <a href="https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline">prioritises</a> hormonal medications and other drug treatments in place of or before surgery.</p>
<h2>Imaging techniques</h2>
<p>Over the past <a href="https://dx.doi.org/10.1002%2F14651858.CD009591">five to ten years</a>, there has been an increasing ability to “see” endometriosis using imaging such as transvaginal ultrasound (an internal scan where the ultrasound wand is inserted into the vagina) and magnetic resonance imaging (MRI). </p>
<p>Diagnosing endometriosis through medical imaging is gaining <a href="https://academic.oup.com/hropen/article/2022/2/hoac009/6537540">popularity</a> because it allows doctors and patients to understand the diagnosis and extent of the endometriosis without having to <a href="https://doi.org/10.1016/j.jmig.2020.02.014">perform surgery</a>. </p>
<figure class="align-center ">
<img alt="Woman undergoing an MRI talks to her nurse." src="https://images.theconversation.com/files/464943/original/file-20220524-24-oa7svy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/464943/original/file-20220524-24-oa7svy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/464943/original/file-20220524-24-oa7svy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/464943/original/file-20220524-24-oa7svy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/464943/original/file-20220524-24-oa7svy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/464943/original/file-20220524-24-oa7svy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/464943/original/file-20220524-24-oa7svy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Some endometriosis can be see on MRIs.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/nurse-talking-patient-mri-scan-machine-1866109276">Shutterstock</a></span>
</figcaption>
</figure>
<p>The ability to see endometriosis relies heavily on the expertise of the person doing and interpreting the <a href="https://doi.org/10.1002/uog.24892">imaging test</a>, just as seeing endometriosis at surgery relies on the expertise of the surgeon. </p>
<p>Not all types of endometriosis are yet reliably seen on an imaging test. For example, severe endometriosis with deep nodules and adhesions (bands of scarring which can attach to other organs) is easier to see than superficial endometriosis, which sometimes consists of a few deposits no larger than a few millimetres. </p>
<p>If the imaging is done by someone with expertise, it is generally possible to “rule out” moderate to severe endometriosis but minimal to mild disease <a href="https://doi.org/10.1016/j.jmig.2020.02.014">may not be detected</a>. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/i-have-painful-periods-could-it-be-endometriosis-101026">I have painful periods, could it be endometriosis?</a>
</strong>
</em>
</p>
<hr>
<p>Ideally, an imaging-based diagnosis should eliminate the need to have a two-step surgery (diagnostic surgery followed by treatment surgery), as the surgeon has a better understanding of the location and extent of the disease before starting the first surgery. This increases the likelihood of success with a single treatment surgery. </p>
<p>However, there are legitimate concerns that a move to use an imaging-based diagnosis will leave those with a “normal scan” falsely reassured because the disease is not visible on the scan. So, doctors should never tell someone they don’t have endometriosis based on an imaging test alone.</p><img src="https://counter.theconversation.com/content/180246/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mike Armour is the chair of the Endometriosis Australia research committee. He reports receiving funding from Metagenics, Canopy Growth, and Sci-Chem, outside the submitted work. </span></em></p><p class="fine-print"><em><span>Cecilia Ng receives funding from the Medical Research Future Fund (MRFF). </span></em></p><p class="fine-print"><em><span>ML reports receiving grant funding from OZWAC, Endometriosis Australia, AbbVie, CanSAGE, MRFF, HHS; honoraria for lectures/writing from GE Healthcare, Bayer, AbbVie, TerSera, consulting fees from Imagendo, outside the submitted work. </span></em></p>Clinicians now able to give a clinical diagnosis of “suspected endometriosis” based on symptoms and a physical examination.Mike Armour, Senior research fellow in reproductive health, Western Sydney UniversityCecilia Ng, Adjunct Senior Lecturer, Clinical Trials Network Manager, UNSW SydneyMathew Leonardi, Gynaecological Surgeon and Sonologist, McMaster University; Adjunct Lecturer, University of Adelaide, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1818032022-04-26T15:33:24Z2022-04-26T15:33:24ZEndometriosis: pandemic backlog risks making it even harder for women to get help<figure><img src="https://images.theconversation.com/files/459817/original/file-20220426-22-cbbi79.jpg?ixlib=rb-1.1.0&rect=53%2C0%2C6000%2C3997&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">One in 20 UK women will now wait more than a year for an appointment.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/coronavirus-hospital-covid-19-woman-medical-1721906755">Elizaveta Galitckaia/ Shutterstock</a></span></figcaption></figure><p>The COVID-19 pandemic has had a <a href="https://www.rcog.org.uk/news/more-than-half-a-million-women-face-prolonged-waits-for-gynaecology-care/">disproportionate and devastating impact</a> on women’s health, according to a report from the Royal College of Obstetricians and Gynaecologists.</p>
<p>The <a href="https://rcog.shorthandstories.com/lefttoolong/index.html#group-section-Foreword-LiwE2VBZtN">report found</a> that more than half a million women in the UK have been forced to wait for “non-urgent” gynaecological care. Waiting lists across the country are now <a href="https://www.rcog.org.uk/news/more-than-half-a-million-women-face-prolonged-waits-for-gynaecology-care/">60% longer than pre-pandemic levels</a>. This means that one in 20 women will now be waiting more than a year to receive gynaecological surgery, specialist treatments and even diagnoses. </p>
<p>Some of those hardest hit by these delays are women suffering with <a href="https://ora.ox.ac.uk/objects/uuid:0b4cfc1d-79e9-4bee-8a4d-76ed21fa986f/download_file?safe_filename=Zondervan_et_al_Endometriosis_VoR.pdf&type_of_work=Journal+article">endometriosis</a>, the chronic inflammatory condition characterised by tissue similar to the womb lining growing elsewhere in the body – in places such as the ovaries or fallopian tubes. An estimated <a href="https://pubmed.ncbi.nlm.nih.gov/19196878/">one in ten women</a> have the condition, many of which live with excruciating pain. </p>
<p>If left untreated or poorly managed, the condition can worsen. This can make it far more challenging to treat, and may have a <a href="https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline.aspx">long-lasting impact</a> on the woman’s health – such as <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941592/">causing fertility problems</a> or worsened pain. </p>
<p>According to the report, the pandemic made it difficult for women with endometriosis to manage their condition and access the kind of specialist treatment they needed. For example, many women experiencing pain caused by endometriosis had to attend A&E for care because specialist care wasn’t available. And after this, many were referred to gynaecology services, which meant waiting up to <a href="https://www.rcog.org.uk/news/more-than-half-a-million-women-face-prolonged-waits-for-gynaecology-care/">five months for an appointment</a>.</p>
<p>For others, delays to care – such as surgeries to manage the condition – meant that not only did their pain worsen, the disease also progressed. This can have a serious effect on many aspects of a woman’s life, including their <a href="https://rcog.shorthandstories.com/lefttoolong/index.html">mental health</a> and <a href="https://www.brighamandwomens.org/obgyn/infertility-reproductive-surgery/endometriosis/endometriosis-and-fertility">fertility</a>. Some will also require more complex and invasive surgeries to manage their condition as a result.</p>
<figure class="align-center ">
<img alt="Woman sits on her bed, holding her stomach in pain." src="https://images.theconversation.com/files/459818/original/file-20220426-26-idiyh1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/459818/original/file-20220426-26-idiyh1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/459818/original/file-20220426-26-idiyh1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/459818/original/file-20220426-26-idiyh1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/459818/original/file-20220426-26-idiyh1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/459818/original/file-20220426-26-idiyh1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/459818/original/file-20220426-26-idiyh1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Being unable to manage pain left some women feeling isolated.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-african-american-woman-feeling-stomach-2080313062">Prostock-studio/ Shutterstock</a></span>
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</figure>
<p>Being unable to get the care they needed to manage their pain effectively left many women feeling isolated and unable to go about their normal life. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5440042/">Poor mental health</a> was already a problem for women with endometriosis even before the pandemic. But more than 80% of women surveyed as part of the report said their mental health worsened during the pandemic, largely because of their pain but, not uncommonly, also because they felt they were being dismissed. </p>
<h2>Looking forward</h2>
<p>Gynaecology services are one of the surgical specialities <a href="https://nhswaitlist.lcp.uk.com">worst hit</a> by COVID-19 backlogs. Part of this is because, early in the pandemic, around half of gynaecology consultants were redeployed to obstetric care services. </p>
<p>Even with things slowly returning to how they were pre-pandemic, it’s likely that the backlog for gynaecology services won’t <a href="https://www.nao.org.uk/wp-content/uploads/2021/07/NHS-backlogs-and-waiting-times-in-England.pdf">decrease until 2025</a>. Given women with endometriosis already <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">wait eight years</a> on average for the right diagnosis, this could make it even more difficult for these women to access care moving forward.</p>
<p>This is why it will be important to begin <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">prioritising gynaecological services</a> and treat them with the same level of urgency as other services, such as <a href="https://nhswaitlist.lcp.uk.com">cancer or rheumatology services</a>. To start, it is important to raise general awareness of the condition and its symptoms, and provide education to women on the disease and how to describe it. In combination with community services, such as your GP, this will ensure that women can still get support even while they wait for specialist care.</p>
<p>It will be some time before waiting times for gynaecological services return to normal. But if you’re one of the many women with endometriosis waiting for treatment or a diagnosis, there are some things you can do to prepare for your next appointment. </p>
<p>For example, tracking and recording your symptoms may be useful when visiting a GP so that you can illustrate what type of pain you’re experiencing and how often. This may aid the <a href="https://www.frontiersin.org/articles/10.3389/fgwh.2021.764693/full#h4">communication of your pain</a>, so your GP can better understand your symptoms and <a href="https://www.sciencedirect.com/science/article/abs/pii/S0301211516308247">how best to treat them</a> while you wait for specialist care.</p>
<p>If you or someone you know is having a difficult time managing the condition, Endometriosis UK also offers support through a <a href="https://www.endometriosis-uk.org/helpline">volunteer-run helpline</a>, led by people who know what you’re going through.</p><img src="https://counter.theconversation.com/content/181803/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Danielle Perro receives funding from the Canadian Institute of Health Research Doctoral Foreign Study Award. </span></em></p><p class="fine-print"><em><span>Christian Becker receives funding from Bayer Healthcare, MRC, ERC. He was the chair of the guideline development group of the recentlty published Endometriosis Guideline by the European Society of Human Reproduction and Embryology (ESHRE).</span></em></p>Women with endometriosis already wait up to eight years for a diagnosis in the UK. Post-pandemic delays could make this even worse.Danielle Perro, DPhil Researcher, Nuffield Department of Women's and Reproductive Health, University of OxfordChristian Becker, Associate Professor, Nuffield Department of Obstetrics and Gynaecology,, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1785912022-04-11T19:01:35Z2022-04-11T19:01:35ZEndometriosis: How advocacy, awareness and algorithms could shorten the long wait for diagnosis and treatment<figure><img src="https://images.theconversation.com/files/456541/original/file-20220406-22-icfn7.jpg?ixlib=rb-1.1.0&rect=409%2C34%2C5119%2C3438&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Despite the prevalence of endometriosis, people often live with pain and other symptoms for years before being diagnosed.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/endometriosis--how-advocacy--awareness-and-algorithms-could-shorten-the-long-wait-for-diagnosis-and-treatment" width="100%" height="400"></iframe>
<p>Endometriosis affects an estimated <a href="https://www.endofound.org/endometriosis">200 million people worldwide</a>. Despite its prevalence, those living with the disease often wait an average of <a href="https://doi.org/10.1177%2F1750481318771430">7.5 years</a> between start of symptoms and diagnosis. This delay is due to a variety of reasons, including <a href="https://theconversation.com/endometriosis-three-reasons-care-still-hasnt-improved-157457">medical dismissal, a low prioritization of the condition and its overall misrepresentation</a> in research funding, policy and media.</p>
<p>Although often represented as a women’s reproductive disease, endometriosis also appears in people who have had hysterectomies, transgender men, genderfluid and non-binary people, pre-menstrual and post-menopausal people, and in rare cases, <a href="https://doi.org/10.1016/j.prp.2011.10.007">cisgender men</a>. </p>
<p>Its symptoms commonly include pain with menstruation, as well as chronic pain, infertility, pain with sexual intercourse, fatigue and more. Despite this full-body impact on one’s <a href="https://doi.org/10.1016/j.fertnstert.2011.05.090">quality of life</a>, endometriosis is commonly associated with just having “bad periods.”</p>
<p>We are four authors from three countries looking at different aspects of endometriosis diagnosis, awareness and patient advocacy. This article emerges from a <a href="https://www.eventbrite.com/e/young-people-endometriosis-social-perspectives-on-the-delay-to-diagnosis-tickets-237420941427#">joint online presentation</a> of our research looking at potential ways to improve awareness and patient care, and promote faster diagnosis.</p>
<p>Our methods include social scientific and qualitative research including interviews, surveys, focus groups, participant observations and collaborations with people living with endometriosis. We identified some clear changes that are needed to promote awareness of the disease, and subsequently reduce diagnostic timelines.</p>
<h2>Widespread endometriosis education</h2>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A powerpoint slide showing the results of Maria Tomlinson's survey and quotes from young people about endometriosis." src="https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=334&fit=crop&dpr=1 600w, https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=334&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=334&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=420&fit=crop&dpr=1 754w, https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=420&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/452013/original/file-20220314-15-2ebu8u.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=420&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Maria Tomlinson’s research surveyed young people about their awareness and knowledge of endometriosis.</span>
<span class="attribution"><span class="source">(Maria Kathryn Tomlinson)</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Our research suggests that endometriosis education is severely lacking, meaning that many people who have the condition do not even know it exists. </p>
<p>In focus groups with 77 16- to 19-year-olds in the United Kingdom, Maria found that only 28 had heard of endometriosis before. Of these, two were able to accurately define it. Most of those who had heard of the disease had done so through friends and family, with some also hearing about it on social media or the internet. None of them had been told about it in their formal education.</p>
<p>Eileen’s survey of 271 people with endometriosis showed that only nine people (3.3 per cent) heard about endometriosis from grade school (elementary, junior or high school) with a few mentioning that they had heard about it briefly in nursing school.</p>
<p>Although Eileen’s interviews and surveys showed that social media can be very beneficial to people who live with endometriosis, Maria’s focus groups showed that social media is not very effective at reaching people who do not have the condition. People with endometriosis often put enormous amounts of work into <a href="https://theconversation.com/what-is-endometriosis-patients-turn-to-social-media-for-information-and-support-160852">sharing endometriosis information online</a>, but it often does not reach the broader population.</p>
<h2>Accurately represent menstrual pain and endometriosis pain</h2>
<p>As Mie identifies in her fieldwork on menstruation among teenagers and interviews with endometriosis patients from Denmark, the normalization of menstrual pain is one of the main factors delaying diagnosis for people with endometriosis. </p>
<p>Although not everyone who has endometriosis menstruates or has menstrual pain, <a href="https://doi.org/10.1177/0884217503261085">it is one of the most common and symptoms, and one of the earliest</a>. Many people are encouraged to use painkillers and hormonal contraceptives to manage their pain, instead of having it investigated. Being prescribed birth control pills without a thorough investigation of symptoms, or consideration for gender identity, were also concerns identified by participants in Maria’s focus groups.</p>
<figure class="align-center ">
<img alt="Cropped image of a pharmacist's hands holding birth control pills with a woman seen from behind" src="https://images.theconversation.com/files/456542/original/file-20220406-21-lb9ifc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/456542/original/file-20220406-21-lb9ifc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/456542/original/file-20220406-21-lb9ifc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/456542/original/file-20220406-21-lb9ifc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/456542/original/file-20220406-21-lb9ifc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/456542/original/file-20220406-21-lb9ifc.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/456542/original/file-20220406-21-lb9ifc.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many people are encouraged to use painkillers and hormonal contraceptives to manage their pain instead of having it investigated.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Maria’s participants also explained how they believe menstrual product advertisements undermined the severity of menstrual pain. They thought that more realistic representations of painful periods might encourage more young people with periods to seek medical help when needed. </p>
<p>Mie’s work identifies the often cyclical nature of endometriosis symptoms as something that can discourage patients from seeking care, as they feel their symptoms are not as extreme when they are not menstruating. Better awareness that cyclical symptoms can also indicate diseases might help patients seek care earlier.</p>
<p>Eileen’s social media analysis shows that people with endometriosis often use social media to represent their lived experiences of menstrual pain and endometriosis with complexity, in contrast to common media representations. </p>
<figure class="align-center ">
<img alt="A word cloud resonding to the question 'What does 'endometriosis' mean to you?' The most prominent words are pain, time and life." src="https://images.theconversation.com/files/452010/original/file-20220314-130173-ynrimv.jpeg?ixlib=rb-1.1.0&rect=12%2C6%2C1172%2C661&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/452010/original/file-20220314-130173-ynrimv.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=300&fit=crop&dpr=1 600w, https://images.theconversation.com/files/452010/original/file-20220314-130173-ynrimv.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=300&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/452010/original/file-20220314-130173-ynrimv.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=300&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/452010/original/file-20220314-130173-ynrimv.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=377&fit=crop&dpr=1 754w, https://images.theconversation.com/files/452010/original/file-20220314-130173-ynrimv.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=377&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/452010/original/file-20220314-130173-ynrimv.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=377&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A word cloud responding to the question, ‘What does endometriosis mean to you?’</span>
<span class="attribution"><span class="source">(Eileen Mary Holowka)</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>In a recent example, Amy Corfeli from the podcast and social media platform <a href="https://www.instagram.com/p/CasRLDBuR52/">@in16yearsofendo</a> used Instagram, Twitter and <a href="https://medium.com/@amycorfeli/dear-greys-anatomy-your-endometriosis-info-needs-updating-4fbb942e616b"><em>Medium</em></a> to address inaccuracies in the television show <em>Grey’s Anatomy</em>’s representation of endometriosis. Unfortunately, <em>Grey’s Anatomy</em> has a larger platform, but social media pages like Amy’s, <a href="https://www.instagram.com/endoqueer/">@endoQueer</a> and <a href="https://www.instagram.com/endo_black/">@endo_black</a> attempt to bring more nuance and diversity into the media depictions of endometriosis.</p>
<p><div data-react-class="InstagramEmbed" data-react-props="{"url":"https://www.instagram.com/p/CasRLDBuR52","accessToken":"127105130696839|b4b75090c9688d81dfd245afe6052f20"}"></div></p>
<h2>Improving diagnostic time</h2>
<p>Endometriosis is an “invisible” condition, meaning it cannot be seen by just looking at someone. Including endometriosis in grade school curricula, covering it more extensively in medical school, and representing it more broadly in media, would help make the disease more apparent so people with symptoms seek care sooner.</p>
<p>However, the burden of care cannot be on patients alone, particularly for a condition like endometriosis which comes with <a href="https://endometriosis.org/resources/clinical-books/googling-endometriosis-david-redwine/">a long history of patient-blaming</a>. Interventions are needed on the medical side, but limited resources, long wait times, suboptimal diagnostic techniques and knowledge, and the low prioritization of endometriosis all <a href="https://theconversation.com/1-in-10-women-are-affected-by-endometriosis-so-why-does-it-take-so-long-to-diagnose-141803">increase diagnostic delays</a>. </p>
<p>It is possible that interventions such as the <a href="https://findingendometriosis.eu/">FEMaLe</a> (Finding Endometriosis using Machine Learning) project, co-ordinated by Ulrik, could help improve diagnosis in the future. This project, emerging out of Denmark, aims to develop and demonstrate a platform that uses algorithms to detect and help diagnose and treat people with endometriosis, in collaboration with their health-care providers. </p>
<p>In order to develop this kind of work, a multidisciplinary approach to endometriosis is needed, including not only medical research, but also the kind of qualitative work outlined in this story.</p><img src="https://counter.theconversation.com/content/178591/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Eileen Mary Holowka receives funding from the Canadian Social Sciences and Humanities Research Council and is a member of the Endometriosis Educational Organization of Canada.</span></em></p><p class="fine-print"><em><span>Dr. Maria Kathryn Tomlinson receives funding from the Leverhulme Trust under Grant ECF-2019-232. Her project is entitled "Menstrual Activism in the Media: Reducing Stigma and Tackling Inequalities".</span></em></p><p class="fine-print"><em><span>Mie Kusk Søndergaard receives funding from the Danish Cancer Society and University of Southern Denmark. She has previously collaborated with the Danish endometriosis association Endometriose Foreningen. </span></em></p><p class="fine-print"><em><span>Ulrik Bak Kirk receives funding from the EU under the H2020 Research and Innovation Action for the 'Finding Endometriosis using Machine Learning' (FEMaLe) project (grant agreement ID: 101017562).</span></em></p>People living with endometriosis wait an average of 7.5 years for a diagnosis. Social science researchers are working to identify ways to help reduce this timeline.Eileen Mary Holowka, PhD Candidate, Communication Studies, Concordia UniversityMaria Kathryn Tomlinson, Leverhulme Early Career Researcher, Department of Journalism Studies, University of SheffieldMie Kusk Søndergaard, PhD fellow, Department of Public Health, University of Southern DenmarkUlrik Bak Kirk, PhD Fellow, FEMaLe Coordinator, Aarhus UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1798462022-03-29T06:12:11Z2022-03-29T06:12:11ZEndometriosis can end women’s careers and stall their education. That’s everyone’s business<figure><img src="https://images.theconversation.com/files/454288/original/file-20220325-32964-arxbrs.jpg?ixlib=rb-1.1.0&rect=2%2C0%2C995%2C666&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/asian-woman-sick-stomach-ache-working-1742815280">Shutterstock</a></span></figcaption></figure><p>The Coalition has announced a <a href="https://www.pm.gov.au/media/record-funding-support-800000-women-endo-and-new-genetic-tests-available">A$58 million funding package</a> to improve endometriosis diagnosis, care and treatment.</p>
<p>This would see new specialised endometriosis and pelvic pain clinics set up in each state and territory, expanded Medicare-funded medical imaging for the condition, and support for women who manage endometriosis with their GP, among other measures.</p>
<p>This announcement would benefit the estimated <a href="https://www.aihw.gov.au/reports/chronic-disease/endometriosis-prevalence-and-hospitalisations/summary">one in nine</a> Australian women with endometriosis.</p>
<p>However, endometriosis is not just a medical issue. Our recently published <a href="https://www.sciencedirect.com/science/article/pii/S104727972100315X">research</a> shows there’s a high chance that women <a href="https://theconversation.com/considering-surgery-for-endometriosis-heres-what-you-need-to-know-102254">surgically diagnosed with endometriosis</a> will leave the workforce.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/considering-surgery-for-endometriosis-heres-what-you-need-to-know-102254">Considering surgery for endometriosis? Here's what you need to know</a>
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</em>
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<h2>Remind me, what is endometriosis?</h2>
<p><a href="https://theconversation.com/1-in-10-women-are-affected-by-endometriosis-so-why-does-it-take-so-long-to-diagnose-141803">Endometriosis</a> causes inflammation when tissue similar to the lining of the womb grows throughout the body. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1506265343672659968"}"></div></p>
<p>Women often describe “stabbing” pain during their period, back pain, and pain going to the toilet and during sex.</p>
<p>They might have stomach pain, vomiting and diarrhoea, headaches, muscle aches and tiredness. Imagine dealing with this every day or not knowing when symptoms might strike.</p>
<p>Endometriosis is <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223316">estimated to cost</a> A$9.7 billion each year to the Australian economy. Most of these costs come from lost productivity at work.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/endometriosis-costs-women-and-society-30-000-a-year-for-every-sufferer-124975">Endometriosis costs women and society $30,000 a year for every sufferer</a>
</strong>
</em>
</p>
<hr>
<h2>How do women with endometriosis struggle at work?</h2>
<p>Focusing at work <a href="https://theconversation.com/women-with-endometriosis-need-support-not-judgement-37340">can be difficult</a> because of unpredictable symptoms, side effects of strong painkillers, and frequent trips to the toilet. </p>
<p>Women seeking a diagnosis of endometriosis through surgery need time off to recover and might find themselves having more surgeries in the future. </p>
<p>Trying to explain this to people at work and employers can be embarrassing, feel like an invasion of privacy or may unfairly risk future career opportunities. </p>
<p>Sick leave can disappear quickly, and women may feel pressured to work while unwell.</p>
<p>Emma Watkins, the former Yellow Wiggle, went public with her battle to balance endometriosis and work. Ongoing pain and the need for surgery to treat it forced Emma to <a href="https://www.abc.net.au/news/2018-04-13/endometriosis-causes-wiggles-performer-emma-to-pull-out-tour/9652518">pull out</a> of the 2018 Wiggles national tour.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"984714082161971200"}"></div></p>
<h2>It can take years to be diagnosed</h2>
<p>Many women with endometriosis start to see symptoms as adolescents or young adults. However, many women aren’t officially diagnosed until their <a href="https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.16447">early thirties</a>. It takes an average of <a href="https://pubmed.ncbi.nlm.nih.gov/33004965/">eight years</a> to be diagnosed. </p>
<p>Stories of women <a href="https://srh.bmj.com/content/41/3/225.long">fighting hard to get a diagnosis</a> because doctors wouldn’t believe them, or take their symptoms seriously, are common.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1288279063858221056"}"></div></p>
<p>To make matters worse, until recently, the only way to tell if someone had endometriosis was to do surgery.</p>
<p>Surgery isn’t the right option for everyone; it has risks, is costly, requires time to recover, and doesn’t always stop women’s pain. Many cannot have, or do not want, surgery and are labelled with “suspected” endometriosis. </p>
<p>Fortunately, international guidelines updated earlier this year say endometriosis can be diagnosed <a href="https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Endometriosis-guideline.aspx">without needing surgery</a>.</p>
<h2>Diagnosis is a turning point</h2>
<p>A diagnosis of endometriosis was a turning point for women’s participation in work, <a href="https://www.sciencedirect.com/science/article/abs/pii/S104727972100315X">our research showed</a>.</p>
<p>We used data from the <a href="https://www.alswh.org.au">Australian Longitudinal Study on Women’s Health</a> to look at employment for 4,494 Australian women born in 1973-78, with and without endometriosis. </p>
<p>We found 63% of women who had surgery for endometriosis were working full-time before diagnosis. This dropped to 44% after diagnosis. </p>
<p>Women who had surgery for endometriosis were 85% more likely to be unemployed three years after their diagnosis than before it. </p>
<p>Women who had “suspected endometriosis” (diagnosed without surgery) stayed working but were more likely to suffer from severe period pain, tiredness, heavy periods, and headaches or migraines than women without endometriosis. </p>
<p>Women who had surgery for endometriosis may have been in a better financial position to afford to get surgery and to eventually stop working than women who didn’t have surgery. </p>
<p>But we cannot underestimate the emotional and physical challenges of living with endometriosis. The often limited support available in the workplace means women may have been forced to stop work.</p>
<h2>How can we support women to stay in work?</h2>
<p>The 2018 <a href="https://www.health.gov.au/resources/publications/national-action-plan-for-endometriosis">National Action Plan for Endometriosis</a> attempts to educate employers about supporting women with endometriosis at work.</p>
<p>This includes offering flexibility in the workplace – whether that’s through job modifications and time off <em>in lieu</em>, or flexible work hours and working from home. </p>
<p>Creating a <a href="https://www.safeworkaustralia.gov.au/system/files/documents/2002/endometriosis.pdf">supportive workplace culture</a> is also important. Non-judgemental responses to women’s experiences with endometriosis are also key.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/women-with-endometriosis-need-support-not-judgement-37340">Women with endometriosis need support, not judgement</a>
</strong>
</em>
</p>
<hr>
<p>Additional days of sick leave for women with endometriosis may also help to manage the demands of their job and symptoms.</p>
<p>These are great starts for women already in work, but we need to do more, and start earlier. </p>
<p>Girls and women need flexibility early in their education to cope with the unpredictable nature of endometriosis. </p>
<p>Virtual classrooms could help minimise missed days at school, TAFE or university. Programs that offer flexibility and allow women to complete their education over a longer period could help. </p>
<h2>More funding will be needed</h2>
<p>The recent funding announcement for people with endometriosis includes A$2 million with a portion to fund a workplace assistance program. This is for employees and employers to navigate discussions in the workplace. </p>
<p>The <a href="https://www.pm.gov.au/media/record-funding-support-800000-women-endo-and-new-genetic-tests-available">detail</a> of how that will work is not yet available, although this just a starting point. More funding will be needed to address the inequity for women with endometriosis in the workplace, to support women to stay working for as long as they want. </p>
<h2>Women with ‘suspected’ endometriosis also need support</h2>
<p>Finally, we mustn’t invalidate women’s experiences of endometriosis, and the severity of their symptoms, based on their type of diagnosis. </p>
<p>Policymakers, doctors and employers should acknowledge women with “suspected” endometriosis need just as much support as those with surgically diagnosed endometriosis.</p><img src="https://counter.theconversation.com/content/179846/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ingrid Rowlands receives funding from NHMRC Medical Research Future Fund. </span></em></p><p class="fine-print"><em><span>Gita Mishra receives funding from National Health and Medical Research Council, MRFF and Commonwealth Department of Health</span></em></p><p class="fine-print"><em><span>Jason Abbott receives funding from NHMRC, MRFF, the Australasian Gynaecology Endoscopy and Surgery Society and Endometriosis Australia for research. He consults to Vifor Australia, Hologic and Gideon Richter. He is formerly a director of Endometriosis Australia (until 2021). </span></em></p>Some women with endometriosis are in so much pain, they’re giving up work. Others are struggling at work or uni. Here’s how we support women with this debilitating disease.Ingrid Rowlands, Research Fellow, The University of QueenslandGita Mishra, Professor of Life Course Epidemiology, Faculty of Medicine, The University of QueenslandJason Abbott, Professor of Obstetrics and Gynaecology, UNSW SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1795002022-03-23T16:27:49Z2022-03-23T16:27:49ZPeople with endometriosis and PCOS wait years for a diagnosis – attitudes to women’s pain may be to blame<figure><img src="https://images.theconversation.com/files/453829/original/file-20220323-23-19qsxu0.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5176%2C3453&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many women are told not to complain about pain.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/sad-unhappy-woman-suffering-pms-menstruation-1357975841">goffkein.pro/ Shutterstock</a></span></figcaption></figure><p>Former Miss Ireland, Chelsea Farrell, <a href="https://www.rsvplive.ie/life/former-miss-ireland-chelsea-farrell-26463906">recently shared the story</a> of how she ended up in the emergency room in severe pain with a twisted ovarian cyst. </p>
<p>After over two-and-a-half years of symptoms, Farrell found out she had endometriosis, polycystic ovary syndrome (PCOS) and an ovarian cyst. She had suffered pain, irregular periods, bloating and pain during sex, but thought this was normal. </p>
<p>Farrell’s story isn’t unique. Many women face difficulties getting diagnoses, care and treatment for such conditions – with some women even reportedly <a href="https://www.bbc.co.uk/news/av/uk-england-tees-60754629">waiting up to 12 years</a> for help. </p>
<p>There are many <a href="https://theconversation.com/endometriosis-three-reasons-care-still-hasnt-improved-157457">complex reasons</a> behind why women with these conditions wait so long for proper help and treatment. But part of it comes down to how women’s pain is often normalised and dismissed in <a href="https://journals.sagepub.com/doi/abs/10.1111/j.1748-720X.2001.tb00037.x">healthcare settings</a> – and <a href="https://www.jpain.org/article/S1526-5900(21)00035-3/fulltext">even society</a> more widely. </p>
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<img alt="Quarter life, a series by The Conversation" src="https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=600&fit=crop&dpr=1 600w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=600&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=600&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=754&fit=crop&dpr=1 754w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=754&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/451343/original/file-20220310-13-1bj6csd.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=754&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p><em>Working to make a difference in the world but struggling to save for a home. Trying to live sustainably while dealing with mental health issues. For those of us in our twenties and thirties, these are the kinds of problems we deal with every day. <strong><a href="https://theconversation.com/uk/topics/quarter-life-117947?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">This article is part of Quarter Life</a></strong>, a series that explores those issues and comes up with solutions.</em></p>
<p><em>More articles:</em></p>
<p><em><a href="https://theconversation.com/news-of-war-can-impact-your-mental-health-heres-how-to-cope-178734?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">News of war can impact your mental health — here’s how to cope</a></em></p>
<p><em><a href="https://theconversation.com/news-of-war-can-impact-your-mental-health-heres-how-to-cope-178734?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">Body image issues affect close to 40% of men – but many don’t get the support they need</a></em></p>
<p><em><a href="https://theconversation.com/would-you-bring-your-dog-to-a-shop-why-retailers-should-be-more-pet-friendly-178112?utm_source=TCUK&utm_medium=linkback&utm_campaign=UK+YP2022&utm_content=InArticleTop">Would you bring your dog to a shop? Why retailers should be more pet-friendly</a></em></p>
<hr>
<p>In 2020, an <a href="https://www.oxfordmail.co.uk/news/18899456.oxford-school-tells-girls-attend-period/">Oxford school</a> caused controversy after suggesting girls should not miss school because of period pain. It reportedly stated: “Learning to deal with a monthly inconvenience is all part of being a woman.” </p>
<p>Not only does this show a lack of understanding of how debilitating menstrual pain can be, but also how girls are taught early on to endure pain rather than to <a href="https://pubmed.ncbi.nlm.nih.gov/33548448/">seek help or medical advice</a>. </p>
<p>This could also mean girls living with possible signs of endometriosis or PCOS won’t seek the help that they need. In fact, many women with PCOS or endometriosis report they felt expected not to to complain and “<a href="https://www.taylorfrancis.com/chapters/edit/10.4324/9781351035620-9/women-experience-endometriosis-elaine-denny-annalise-weckesser">get on with it</a>”, and to accept that “it’s a woman’s lot to suffer.”</p>
<p>This attitude means that women are often <a href="https://blogs.bmj.com/bmj/2021/05/13/placing-womens-voices-at-the-centre-of-their-care/">not involved in their own care</a> and that their complaints are often dismissed as “women’s problems”. This “<a href="https://www.theguardian.com/society/2020/jul/08/denial-of-womens-concerns-contributed-to-medical-scandals-says-inquiry">arrogant culture</a>” of not taking women’s concerns seriously has even led to decades of medical scandals, avoidable patient harm, and needless suffering.</p>
<h2>Unnecessary wait</h2>
<p>For the last decade, the average wait for an endometriosis diagnosis in the UK is <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">eight years</a>. Patients often have up to ten doctor visits before being diagnosed. </p>
<p>For <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6283441/">PCOS</a>, it can often take more than two years and appointments with around three doctors for a diagnosis. Both endometriosis and PCOS are complex conditions with symptoms that may vary widely and also resemble other conditions. So, the <a href="https://bjgp.org/content/71/710/e668#sec-7">diagnostic process is also complex</a>, which explains to some extent why diagnosis is slow. </p>
<p>But complexity around diagnosis is not just about symptoms. The UK government’s recent <a href="https://www.gov.uk/government/consultations/womens-health-strategy-call-for-evidence/outcome/results-of-the-womens-health-lets-talk-about-it-survey">Women’s Health Survey</a> captured how women continue to be dismissed and ignored when seeking care. It can be difficult for them to <a href="https://pubmed.ncbi.nlm.nih.gov/30782020/">put their pain into words</a> and they report not always being believed. </p>
<figure class="align-center ">
<img alt="Young woman sitting on a hospital bed waits alone in an examination room." src="https://images.theconversation.com/files/453830/original/file-20220323-23-s7x2p7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/453830/original/file-20220323-23-s7x2p7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/453830/original/file-20220323-23-s7x2p7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/453830/original/file-20220323-23-s7x2p7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/453830/original/file-20220323-23-s7x2p7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/453830/original/file-20220323-23-s7x2p7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/453830/original/file-20220323-23-s7x2p7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many women wait years for a diagnosis.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/waiting-patient-woman-medical-examination-by-1284262312">Roman Kosolapov/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Having their pain dismissed leads many women on a <a href="https://journals.sagepub.com/doi/10.1177/1049732309338725">quest for “credibility”</a> in the hopes of being believed that symptoms are not just “<a href="https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1365-2702.2005.01231.x?casa_token=piHGCQ8OUigAAAAA:rPAJhVl25OH6050jAoTRGWHYUCtMdLoHkTpemFZugUaK0aJte1Z1cGWOmEucnOGb9Q0lxQJETjE5baBH">in their head</a>”. But when your <a href="https://www.sciencedirect.com/science/article/abs/pii/S0738399121006431?casa_token=INfsTASb3G0AAAAA:5U4n-hULqmLm2x7xhoG886fdNa7yKhkwmM8xu6pDIK5HKuRPlWECij_WPnaeED8epeU5hST3d8I">experiences aren’t believed</a> by healthcare professionals, it can lead to lower self esteem and even depression. </p>
<h2>Gender health gap</h2>
<p>The struggles that many women experience when trying to receive a diagnosis for these types of conditions is part of a larger problem when it comes to women’s health. Historically, women have experienced inequality in the kind of healthcare and treatment they have received – which is known as the <a href="https://lordslibrary.parliament.uk/womens-health-outcomes-is-there-a-gender-gap">gender health gap</a>. </p>
<p>The gender health gap may explain why women are more likely to suffer <a href="https://pubmed.ncbi.nlm.nih.gov/30082406/">poorer outcomes</a> when treated by male doctors. It may also be why women are more likely to <a href="https://www.bhf.org.uk/what-we-do/news-from-the-bhf/news-archive/2019/september/heart-attack-gender-gap-is-costing-womens-lives">die from heart attacks</a>, as their symptoms can be different from men’s, whose symptoms still dominate medical textbooks and messaging around first aid. </p>
<p>Women’s pain is <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=383803">treated less aggressively</a> than men’s even when they rate it more severely, it lasts longer or occurs more often. </p>
<p>The gender health gap is even wider for <a href="https://www.hsph.harvard.edu/news/hsph-in-the-news/discrimination-black-womens-health/">black women</a> living in the US and UK. Black women are <a href="https://pubmed.ncbi.nlm.nih.gov/30908874/">less likely</a> to be diagnosed with endometriosis than white women. They’re also more likely to <a href="https://www.nytimes.com/2020/04/15/parenting/fertility/black-women-uterine-fibroids.html">develop uterine fibroids</a> and are significantly more likely to have <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787340/">debilitating symptoms</a> because of them. </p>
<p>Black women may also be more <a href="https://rsphealth.org/pcos/">disproportionately affected by PCOS</a>. Though the reasons for this aren’t fully understood, it might partly be due to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6822100/">poorer access</a> to healthcare.</p>
<p>While problems with women’s health are increasingly being recognised, repeated calls in the past to raise awareness and education for <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">girls, women, and healthcare professionals</a> haven’t led to much-needed change. It’s essential that better, <a href="https://bjgp.org/content/71/710/e668#sec-7">evidence-based resources</a> are developed for both women and health professionals to ensure that every woman – no matter her health needs or experiences – can receive the right care. </p>
<p>But it’s simplistic to assume that the difficulties women face in accessing equitable healthcare and the right diagnosis will be solved by more information alone. </p>
<p>We must also address the <a href="https://theconversation.com/endometriosis-three-reasons-care-still-hasnt-improved-157457">larger societal issues</a> of stigmatising and de-prioritising women’s health, the inadequate funding for women’s health research and the implicit gender and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8004354/">racial biases</a> that underpin current health inequalities. </p>
<p>It’s unlikely that significant changes in the way women’s healthcare is delivered will happen anytime soon. So for now, it will be important that women continue to advocate for their own health. </p>
<p>If you suspect you may have endometriosis or PCOS, continue to seek help. Consider <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Information/pain-symptoms-diary.pdf">keeping track</a> of your pain and symptoms so you can discuss them with your GP. Remember, pain is not something you have to put up with.</p><img src="https://counter.theconversation.com/content/179500/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Anne-Marie Boylan has received funding from the National Institute of Health Research (NIHR). </span></em></p><p class="fine-print"><em><span>Annalise Weckesser has received funding from NIHR and ESRC previously. </span></em></p><p class="fine-print"><em><span>Sharon Dixon work on endometriosis in primary care was funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project number: 403). </span></em></p>The “gender health gap” may be at the root of this problem.Anne-Marie Boylan, Departmental Lecturer & Senior Research Fellow, University of OxfordAnnalise Weckesser, Senior Research Fellow, Medical Anthropology, Birmingham City UniversitySharon Dixon, Researcher, Primary Care Health Sciences, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1720732021-11-22T16:00:45Z2021-11-22T16:00:45ZEndometriosis: understanding how sufferers describe pain could lead to faster diagnosis<figure><img src="https://images.theconversation.com/files/433131/original/file-20211122-15-1cl6ne8.jpg?ixlib=rb-1.1.0&rect=7%2C0%2C5008%2C3339&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Women wait up to eight years to receive an endometriosis diagnosis.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-talking-unhappy-teenage-patient-exam-536008132">Monkey Business Images/ Shutterstock</a></span></figcaption></figure><p>Though endometriosis affects an estimated <a href="https://www.endometriosis-uk.org/endometriosis-facts-and-figures">one in ten women of reproductive age</a>, most women with the condition <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">visit a GP over ten times</a> before being referred to specialist care for a diagnosis. This can mean an average wait of <a href="https://pubmed.ncbi.nlm.nih.gov/31328629/">eight years to receive a diagnosis</a>. Given the chronic pelvic pain that <a href="https://theconversation.com/uk/topics/endometriosis-2405">endometriosis</a> causes – which can sometimes be incapacitating – this delay can severely impact suferrers’ <a href="https://pubmed.ncbi.nlm.nih.gov/23847114/">physical, social and mental health</a>.</p>
<p>While a key cause of this delay is the <a href="https://doi.org/10.1080/0167482X.2019.1678022">dismissal and normalisation of women’s pain</a>, another cause may be the challenge of adequately <a href="https://journals.sagepub.com/doi/10.1177/1363459318817943">communicating how it feels</a> – which is something <a href="https://www.frontiersin.org/articles/10.3389/fgwh.2021.764693/full">our latest study</a> explored.</p>
<p>We found that both women and doctors find current tools for communicating endometriosis pain inadequate. We also found that some of the language women used to articulate their pain wasn’t recognised by GPs. This miscommunication could mean many women aren’t getting the diagnosis or treatment they need – or may be waiting longer than necessary for it.</p>
<p>To conduct our study, we first surveyed 131 women with endometriosis. We asked them about the difficulties they faced talking about their pain with doctors prior to being diagnosed, and how they describe their pain. </p>
<p>Many women reported that the numeric rating scales (zero being no pain and severe pain being a ten) commonly used in consultation didn’t accurately capture the severity and impact of their pain on their day-to-day lives. Some expressed the need for linguistic or visual tools, with one participant stating: “I did not associate what I was feeling as ‘pain.’ I needed to see a list of feelings … like burning, dragging, squeezing.” </p>
<p>Women also reported feeling unheard when they tried to describe their symptoms in consultations. They often felt rushed or discouraged from talking, and some felt intimidated. This not only posed challenges for effectively communicating their pain to their GP, it also made women feel their pain was being dismissed. Research shows that this kind of invalidation by health professionals is associated with <a href="https://www.sciencedirect.com/science/article/abs/pii/S0738399121006431">lower self-esteem and depression</a> in patients with endometriosis.</p>
<p>Our research also revealed that many women use metaphors and similes to describe their pain. The most common metaphors were those that invoke violence. For example, a recurrent metaphor women used to describe their pain was “as if somebody is repeatedly stabbing me with a large knife”. </p>
<p>Other common metaphors compared pain to heat – “like having a hot poker planted inside your stomach” – or pressure, describing it as having “a balloon inside me pushing on everything”. While these metaphorical expressions aren’t typically used by GPs to diagnose endometriosis, the language still gives a good indication of the type and intensity of the pain being experienced. </p>
<figure class="align-center ">
<img alt="Woman holding her stomach in discomfort." src="https://images.theconversation.com/files/433133/original/file-20211122-17-e7u1vv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/433133/original/file-20211122-17-e7u1vv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/433133/original/file-20211122-17-e7u1vv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/433133/original/file-20211122-17-e7u1vv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/433133/original/file-20211122-17-e7u1vv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/433133/original/file-20211122-17-e7u1vv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/433133/original/file-20211122-17-e7u1vv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Metaphor and simile can help patients describe their pain better than numeric scales.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/pelvic-pain-stomachache-medical-healthcare-concept-1245941269">BlurryMe/ Shutterstock</a></span>
</figcaption>
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<p>We also conducted interviews with 11 GPs, asking how they assess suspected endometriosis pain and how their patients talk about such symptoms. We then presented them with the metaphors that women commonly used to describe their <a href="https://theconversation.com/endometriosis-three-reasons-care-still-hasnt-improved-157457">endometriosis pain</a>.</p>
<p>Three of the GPs we spoke to reported they wouldn’t initially suspect endometriosis if women used these common metaphors and similes. Some of the expressions such as those including or suggesting words like stabbing or burning were also more likely to make the GPs suspect nerve pain or an infection rather than endometriosis, which they would want to investigate first. One GP also said that they would associate “more of crampy type pain” with endometriosis, as opposed to the words women used to describe their sensations. </p>
<p>While most GPs reported using the numeric rating scales in their diagnoses, many also felt it was an insufficient tool for assessing pain on its own. Instead, they reported using the scale along with questions about how the pain impacts a patient’s life, as well as the location, frequency, duration and quality of the pain.</p>
<p>Most of the GPs, however, did identify these metaphors as indicative of possible endometriosis – even recognising them as ones they often hear from patients with the condition. Some GPs also found use of metaphors and similes helpful in their investigations – even saying it can help patients describe their symptoms when they’re struggling to find the words. </p>
<h2>Describing pain</h2>
<p>Research with UK GPs has also shown that endometriosis is <a href="https://bjgp.org/content/71/710/e668.short">challenging to diagnose</a> because symptoms resemble those of other conditions they seek to rule out first. We know that when physicians use metaphors, it can <a href="https://pubmed.ncbi.nlm.nih.gov/19922170/">improve communication</a> with seriously ill patients. And other research shows that when healthcare providers know the common metaphors used by chronic pain sufferers, it can make them less likely to <a href="https://bpspsychub.onlinelibrary.wiley.com/doi/full/10.1111/bjhp.12432">dismiss or misunderstand a patient’s symptoms</a>. </p>
<p>This is why improving GPs’ knowledge of pain metaphors commonly used by women with endometriosis could increase the likelihood that their pain will be understood and believed, which is central to <a href="https://theconversation.com/endometriosis-three-reasons-care-still-hasnt-improved-157457">improving diagnostic times</a>. </p>
<p>Our study shows that new and different ways of communicating endometriosis pain to doctors is needed to improve how quickly a <a href="https://theconversation.com/why-we-need-to-get-creative-when-it-comes-to-talking-about-pain-152257">patient is diagnosed</a>. Metaphor, simile and other creative ways of communicating might be one way of doing this, as shown by our research.</p>
<p><a href="https://files.medelement.com/uploads/materials/f67dd5716df231df2e2438e0b2a1a6e8.pdf">Pain is subjective</a>. This is why communicating endometriosis pain is such a challenge. We know from our research and other studies that metaphors and similes are a useful tool for pain sufferers in <a href="https://www.tandfonline.com/doi/abs/10.1080/10926488.2010.510926">describing these internal experiences</a>. The key now will be making sure GPs know how to recognise the common language women use to communicate their <a href="https://theconversation.com/people-with-endometriosis-and-pcos-wait-years-for-a-diagnosis-attitudes-to-womens-pain-may-be-to-blame-179500">endometriosis pain</a> so more can benefit from a diagnosis.</p><img src="https://counter.theconversation.com/content/172073/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>GPs don’t always recognise the metaphors and similes women use to describe their pain – which could mean delays in a diagnosis.Annalise Weckesser, Senior Research Fellow, Medical Anthropology, Birmingham City UniversityStella Bullo, Senior Lecturer in Linguistics, Manchester Metropolitan UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1721952021-11-22T16:00:44Z2021-11-22T16:00:44ZEndometriosis: targeting a different type of pain may be key in improving treatment – new research<figure><img src="https://images.theconversation.com/files/433164/original/file-20211122-17-y3254.jpg?ixlib=rb-1.1.0&rect=0%2C12%2C8085%2C5369&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Neuropathic pain doesn't respond to painkillers.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/woman-sitting-on-sofa-suffering-stomach-1821338285">Dragana Gordic/ Shutterstock</a></span></figcaption></figure><p>Around <a href="https://www.nejm.org/doi/10.1056/NEJMra1810764">one in ten women</a> worldwide suffer from endometriosis. The condition is characterised by chronic pelvic pain, which is not only extremely painful but can also result in infertility. It is caused by tissue that resembles the lining of the uterus (known as the endometrium) growing outside of the uterus. </p>
<p>There’s currently no cure for endometriosis. And though there are treatments available for managing symptoms and pain, these often have limited effectiveness – with some trials showing between <a href="https://pubmed.ncbi.nlm.nih.gov/28668150/">11% and 19%</a> of women have no reduction in their pain. </p>
<p>Most current pain treatments for endometriosis have focused on targeting what’s known as “<a href="https://www.iasp-pain.org/resources/terminology/#nociceptive-pain">nociceptive pain</a>”. This is pain that’s associated with potential or actual tissue damage. Generally, nociceptive pain responds well to standard painkillers, so most endometriosis treatments contain <a href="https://pubmed.ncbi.nlm.nih.gov/28114727/">ibuprofen or paracetamol</a>.</p>
<p>But given that only some women with endometriosis respond to these types of pain treatments, researchers are now beginning to investigate a different type of treatment based around what is called neuropathic pain. This is pain that happens because of damage to the nerves themselves – and it often <a href="https://pubmed.ncbi.nlm.nih.gov/26436601/">doesn’t respond</a> to painkillers like ibuprofen. Neuropathic pain conditions can cause great <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5701895/">psychological distress</a> and <a href="https://www.auajournals.org/doi/10.1016/j.juro.2011.10.036">intense pain</a>. </p>
<p>We wanted to know whether neuropathic pain could explain why some women weren’t responding to traditional endometriosis pain treatments. And <a href="https://www.frontiersin.org/articles/10.3389/fpain.2021.743812/full">we found that</a> 40% of people with the condition can be classified as experiencing this kind of pain. </p>
<h2>Nerve pain</h2>
<p>Until recently, no research had looked into whether people with endometriosis actually have neuropathic pain. But there are a couple of theories why sufferers can experience this kind of pain. </p>
<p>First, the bits of tissue which begin growing outside the uterus – called “endometriotic lesions” – have new nerves inside them. These new nerves could be more sensitive, or they could be being squashed by other tissue, both of which can cause neuropathic pain.</p>
<p>Second, the only definitive way to diagnose endometriosis is through laparoscopy (where a small camera is inserted into the pelvis through a small incision in the belly button). This naturally involves cutting through nerves, which can lead to <a href="https://pubmed.ncbi.nlm.nih.gov/28134653/">post-surgical neuropathic pain</a>. </p>
<p>We carried out an online survey of 1,417 people who had reported having endometriosis that had been diagnosed by laparoscopic surgery. We used a screening tool for neuropathic pain called painDETECT, which is made up of nine questions that ask about the characteristics of pain – such as whether the pain is “burning” or “like electric shocks”. It also asks about how the pain varies over time and whether it radiates to other areas of the body. Depending on the answers the person provided, we were able to categorise people into having either nociceptive pain or neuropathic pain – or a mixture of both. </p>
<figure class="align-center ">
<img alt="Woman lying in bed holding her abdomen in pain." src="https://images.theconversation.com/files/433165/original/file-20211122-25-ziexv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/433165/original/file-20211122-25-ziexv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/433165/original/file-20211122-25-ziexv3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/433165/original/file-20211122-25-ziexv3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/433165/original/file-20211122-25-ziexv3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/433165/original/file-20211122-25-ziexv3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/433165/original/file-20211122-25-ziexv3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Many women had a mixture of the type of pain they experienced.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-asian-woman-suffering-abdominal-pain-1105166669">Chompoo Suriyo/ Shutterstock</a></span>
</figcaption>
</figure>
<p>We found that 40% of respondents had neuropathic pain. A further 35% had a mixture of neuropathic and nociceptive pain. We also found that those with neuropathic pain experience greater pain in general (both during their period, throughout their menstrual cycle or during sex), greater anxiety and depression, and greater fatigue and cognitive dysfunction (such as having trouble thinking and remembering things). </p>
<p>We also found that the greater the number of endometriosis or other abdominal surgeries a person had had, the more likely they were to have neuropathic pain. Surgery is not only used to diagnose endometriosis, but to cut or burn away endometriotic lesions in the hope of relieving symptoms.</p>
<h2>Looking forward</h2>
<p>Our finding about the prevalence of neuropathic pain highlights the importance of investigating how to treat and manage it in relation to endometriosis. But what we can’t tell from our study is what’s causing this neuropathic pain – and whether repeated surgery for patients is helpful or harmful. </p>
<p>Going forward, it will be important to carry out studies looking at better diagnosing neuropathic pain and looking at how it is experienced from person to person, which may help them determine the underlying mechanisms of pain in endometriosis. Ultimately the better we understand these mechanisms, the better we’ll be able to develop drugs to treat endometriosis pain. It may also be worth investigating whether treatments for other <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4493167/">neuropathic pain conditions</a> – such as postherpetic neuralgia, a complication of shingles which causes burning pain – work equally as well for people with endometriosis.</p>
<p>These studies will also need to investigate how to identify those who are most likely to benefit from these treatments, potentially using screening tools such as questionnaires. This is especially important as we move from the one-size-fits-all approach currently widely implemented to a personalised treatment plan which is chosen based on the patient’s pain symptoms.</p><img src="https://counter.theconversation.com/content/172195/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Katy Vincent receives research funding from Bayer Healthcare, NIHR, NIH and the EU (IMI2). She has received honoraria and travel expenses in return for consultancy and talks for Bayer Healthcare, Grunenthal GmBH, Eli Lilly and AbbVie.
</span></em></p><p class="fine-print"><em><span>Lydia Coxon does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Our research revealed around 40% of women with endometriosis have neuropathic pain – a type of pain that doesn’t respond to traditional pain treatments.Lydia Coxon, Postdoctoral Researcher, Pain in Women Group, University of OxfordKaty Vincent, Associate Professor, Pain in Women Group, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1672112021-09-06T10:02:18Z2021-09-06T10:02:18ZEndometriosis: gene identified which could be potential treatment target – new study<figure><img src="https://images.theconversation.com/files/419567/original/file-20210906-15-1648i8k.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5184%2C3453&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Endometriosis can be an extremely painful condition.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/unhappy-woman-holding-hands-on-stomach-1850666464">Jelena Stanojkovic/ Shutterstock</a></span></figcaption></figure><p>Up to 10% of women experience <a href="https://www.nejm.org/doi/10.1056/NEJMra1810764">endometriosis worldwide</a>. The condition is chronic, extremely painful, and can result in infertility. Endometriosis happens when tissue similar to the lining of the womb (the endometrium) grows outside of the womb, in the abdominal cavity and sometimes on the ovaries and the fallopian tubes. These tissues respond to the hormonal signals of the menstrual cycle just like the endometrium does, which can cause severe pelvic or period pain.</p>
<p>How and why endometriosis develops is unknown – and currently there’s no cure. While treatments such as painkillers, surgery and even hormonal contraceptives are available, they don’t always work, and many women find them to be insufficient. </p>
<p>But our <a href="https://www.science.org/doi/10.1126/scitranslmed.abd6469">recent collaborative study</a> might have brought us one step closer towards finding a potential new target for treatment. We have discovered that DNA variations in the gene that produces the protein neuropeptide S receptor 1 (NPSR1) occur more often in women with endometriosis than in women who don’t have the condition. NPSR1 plays a role in the transmission of nerve signals and in inflammation.</p>
<p>Our team at Oxford University has been working for decades to understand what genes cause endometriosis. We initially began conducting our research after observing that the condition can run in families – and that up to 50% of endometriosis risk in women is due to genetics. But finding the genes that cause the condition wasn’t a straightforward task. Endometriosis is complex and influenced by many factors – including a person’s genetic make-up, the environment, and the way these two factors interact. </p>
<p>To see what was different in the genetic make-up of endometriosis patients, we analysed the genome – the complete set of genes any person carries – of women with endometriosis and a family history of the condition, and those without a known family history. We then compared their DNA to women without endometriosis. In total, we analysed the genomes from 32 families with at least three women who had endometriosis and 105 women without endometriosis. We also consulted another genetic dataset of more than 3,000 endometriosis cases and 2,300 controls. </p>
<p>The familial analysis at first narrowed the cause down to an area on chromosome seven, which contains around 100 genes. Only after further and more detailed DNA sequencing did we find that it was the NPSR1 gene that carried significantly more harmful variants in women with endometriosis than other genes within the chromosome seven area. Women without endometriosis tended to have the normal NPSR1 gene more often.</p>
<figure class="align-center ">
<img alt="Illustration of a woman with endometriosis pain talking with her doctor." src="https://images.theconversation.com/files/419568/original/file-20210906-21-1ria24z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/419568/original/file-20210906-21-1ria24z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=360&fit=crop&dpr=1 600w, https://images.theconversation.com/files/419568/original/file-20210906-21-1ria24z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=360&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/419568/original/file-20210906-21-1ria24z.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=360&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/419568/original/file-20210906-21-1ria24z.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=452&fit=crop&dpr=1 754w, https://images.theconversation.com/files/419568/original/file-20210906-21-1ria24z.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=452&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/419568/original/file-20210906-21-1ria24z.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=452&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Understanding more about the genetic cause could lead to better treatments.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-vector/woman-on-consultation-gynecologist-experiencing-pain-1789709066">Cadmium_Red/ Shutterstock</a></span>
</figcaption>
</figure>
<p>To further confirm these findings, our collaborators at the University of Wisconsin-Madison and Baylor College of Medicine then checked DNA variations in a colony of rhesus macaques. These monkeys have periods like humans do – and also get endometriosis. Sure enough, we found that changes within the same region on the macaque equivalent of human chromosome seven occurred more often in monkeys with endometriosis. </p>
<p>After confirming this link, the next step of our research was to test whether shutting down the activity of NPSR1 had any effect on inflammation associated with endometriosis. To do this, we first conducted experiments using cells, then mice. Our team and our collaborators at German pharma group Bayer found that if we shut down the activity of NPSR1 in immune cells, they became less responsive and produced less of a protein that normally drives inflammation. The mice in turn showed diminished inflammation and were in less pain than without the treatment.</p>
<p>However, the drug we used in these experiments is what’s known as a “tool compound” – meaning it’s only approved for use in cell and animal experiments, but is not able to be used on humans. The next step of research will be finding a drug that can be used in humans to similarly shut down NPSR1 activity, and see whether doing so also reduces symptoms of endometriosis. </p>
<h2>Understanding NPSR1</h2>
<p>There’s still a whole lot we don’t know, though. For example, how exactly is NPSR1 connected to endometriosis – and what does it do (or not do) that leads to inflammation and pain? It will also be important to uncover how DNA variants of NPSR1 affect the protein’s function, and in which tissues. </p>
<p>Interestingly, NPSR1 also has a role in inflammation that occurs with other health conditions, including <a href="https://doi.org/10.1126/science.1090010">asthma</a> and <a href="https://doi.org/10.1053/j.gastro.2007.06.012">inflammatory bowel disease</a>. It’s also found in <a href="https://doi.org/10.1093/cercor/bhv259">certain regions of the brain</a>, where it has effects on <a href="https://www.nature.com/articles/mp201079">anxiety and behaviour</a>. This could mean that NPSR1 could play a role in the perception of pain, and in the anxiety that goes along with endometriosis. </p>
<p>Chronic suffering and exposure to pain also <a href="https://doi.org/10.1093/humupd/dmu025">changes the brain’s architecture</a> – meaning the wiring of the brain cells and nerves respond differently and change over time. It might also be possible that the connection of NPSR1 to endometriosis happens not just in inflammation and abdominal pain, but also in the brain itself. This is another aspect of NSPR1 that will need to be explored.</p>
<p>Regardless, our research has shown that shutting down this receptor eases pain and inflammation in mouse models of inflammation and endometriosis. This opens up the future possibility for developing drugs against NPSR1 that would ease symptoms of endometriosis without shutting down the menstrual cycle, and potentially alleviate pain for millions of women.</p><img src="https://counter.theconversation.com/content/167211/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Krina Zondervan has received funding from the Wellcome Trust, Medical Research Council, EU-Horizon 2020, Wellbeing of Women, US National Institutes of Health, Bayer AG, MDNA Life Sciences, Roche Diagnostics Inc. The work described was funded by the Wellcome Trust, US National Institutes of Health and Bayer AG. </span></em></p><p class="fine-print"><em><span>Thomas Tapmeier does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>There’s currently no cure for the condition, which millions of women suffer with worldwide.Krina Zondervan, Professor, Reproductive and Genomic Epidemiology, University of OxfordThomas Tapmeier, Senior Research Fellow in Women's Health, Monash UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1608522021-06-01T14:02:34Z2021-06-01T14:02:34ZWhat is endometriosis? Patients turn to social media for information and support<figure><img src="https://images.theconversation.com/files/403407/original/file-20210528-21-1b2mbyj.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C3600%2C2403&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Endometriosis awareness has skyrocketed over the last decade thanks to social media use, and this brings both new resources and challenges for those living with the disease.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Endometriosis is an inflammatory condition where tissue similar to the lining of the uterus grows outside the uterus. It affects <a href="https://endometriosisnetwork.com/">one in 10 women</a> and undetermined numbers of transgender and non-binary people.</p>
<p>Despite its prevalence and <a href="https://doi.org/10.1016/s1701-2163(16)34986-6">the accompanying economic burden</a>, endometriosis is <a href="https://doi.org/10.1016/j.jogc.2020.05.009">underfunded</a> and steeped in <a href="http://hdl.handle.net/2142/86621">histories of sexism, racism and classism</a>. </p>
<p>Even today, endometriosis commonly gets <a href="https://doi.org/10.1007/978-981-15-0614-7_22">misrepresented and inaccurately defined</a>, sometimes even within medical literature. It is also widely treated as a reproductive disease, despite often <a href="https://dx.doi.org/10.18632%2Foncotarget.16889">affecting other organs and systems of the body</a>.</p>
<p>In 2018, “What is endometriosis?” was the third highest trending health-related question on Google. In the United States alone, there are more than <a href="https://doi.org/10.1016/j.ajog.2016.11.1007">400,000 monthly Google searches of endometriosis</a>.</p>
<p>Endometriosis awareness has skyrocketed over the last decade thanks to social media use, bringing with it both new resources and new challenges for those living with the disease.</p>
<p>The amount of knowledge, representation and support that people living with endometriosis produce on social media is astronomical. Although it is important to remain wary of misinformation, it is also necessary to listen to what these patients are saying and not dismiss their social media use. </p>
<h2>Histories of mistreatment</h2>
<p>Endometriosis care is perceived as lower priority for <a href="https://theconversation.com/endometriosis-three-reasons-care-still-hasnt-improved-157457">a number of reasons</a>, many of which are based <a href="https://theconversation.com/pregnancy-doesnt-cure-endometriosis-so-where-does-this-advice-come-from-88951">on age-old myths</a> and discrimination.</p>
<p><div data-react-class="InstagramEmbed" data-react-props="{"url":"https://www.instagram.com/p/CNVYEz0MVie","accessToken":"127105130696839|b4b75090c9688d81dfd245afe6052f20"}"></div></p>
<p>Patient-blaming in endometriosis can be traced <a href="https://endometriosis.org/resources/clinical-books/googling-endometriosis-david-redwine/">as far back as 400 BCE</a>, when women were often held responsible for their symptoms for dubious reasons such as “poor morals” or too much sexual intercourse.</p>
<p>Although endometriosis treatment has improved since the <a href="https://endometriosis.org/resources/clinical-books/googling-endometriosis-david-redwine/">intravaginal leechings</a> and other dated treatments of the past, contemporary patients still <a href="https://doi.org/10.1111/j.1365-2648.2004.03055.x">regularly experience dismissal</a> and patient-blaming. </p>
<p>People living with the disease face a <a href="https://doi.org/10.1177%2F1750481318771430">worldwide average delay of 7.5 years</a> between onset of symptoms to diagnosis. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/1-in-10-women-are-affected-by-endometriosis-so-why-does-it-take-so-long-to-diagnose-141803">1 in 10 women are affected by endometriosis. So why does it take so long to diagnose?</a>
</strong>
</em>
</p>
<hr>
<p>In the face of this mistreatment, many turn to social media for answers. </p>
<h2>Turning to social media</h2>
<p>In my survey of 287 people living with endometriosis, 61.6 per cent of said they did not learn about the disease from a health-care practitioner, and 11.5 per cent of those who did still experienced dismissal, delays or misinformation from those practitioners.</p>
<p>Although only 23.6 per cent first learned about endometriosis online, 81.6 per cent said that social media played a role in their process of seeking a diagnosis or learning about endometriosis. Similarly, 92 per cent said they learned something new about endometriosis from social media that they did not hear about elsewhere.</p>
<p>It is clear that social media has played an important role in making information about endometriosis more accessible. Advocate-run Facebook groups and Instagram pages mean that people can type their symptoms into Google. Although <a href="https://doi.org/10.1080/15398285.2020.1816803">misinformation also propagates online</a>, endometriosis advocates have worked hard to try and make accurate information rise to the top.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A yellow image with images of people reads CHARTING A PATH TO BETTER ENDOMETRIOSIS CARE. SUPPORTING YOU TO UNDERSTAND THE DISEASE, ADVOCATE FOR YOUR HEALTH, AND GET THE BEST POSSIBLE TREATMENT." src="https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=254&fit=crop&dpr=1 600w, https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=254&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=254&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=319&fit=crop&dpr=1 754w, https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=319&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/402410/original/file-20210524-19-li3hkj.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=319&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Nancy’s Nook Endo is an online resource for people dealing with endometriosis — the site began as a Facebook group.</span>
<span class="attribution"><a class="source" href="https://nancysnookendo.com/">(Nancy's Nook Endo)</a>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>The Facebook group “<a href="https://www.facebook.com/groups/NancysNookEndoEd">Nancy’s Nook Endometriosis Education</a>,” for example, provides an enormous archive of files with information and research on endometriosis, including how to find specialized doctors. In the last year, Nancy’s Nook has grown to well over 100,000 members, including patients, doctors and caregivers. Nancy’s Nook focuses primarily on education, but other groups such as “<a href="https://www.facebook.com/groups/117791448846494">Endo Knows No Gend-o</a>” and “<a href="https://www.facebook.com/groups/endometropolis">EndoMetropolis</a>” provide emotional support. </p>
<p>Instagram pages such as <a href="https://www.instagram.com/endometriosissummit/">@EndometriosisSummit</a> and <a href="https://www.instagram.com/theendo.co/">@theendo.co</a> use popular trends like selfie challenges to promote accurate information. However, their content must also compete with businesses who use the hashtag #endometriosis to sell their products and <a href="https://www.endofound.org/fake-news-and-the-endometriosis-community">celebrities or influencers</a> who may share misinformation.</p>
<p>While the endometriosis social media landscape is fraught, it is also growing at a rapid pace. As my survey shows, social media often provides important resources and support to many of those living with the disease. Despite this, <a href="https://doi.org/10.2196/jmir.5729">research suggests</a> that there is commonly a trust gap between doctors and patients when discussing information found online.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A woman sits on a sofa holding her stomach in pain" src="https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/403416/original/file-20210528-16-1lxk8k1.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">It can take over seven years for people with endometriosis to receive a diagnosis and treatment.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Patient-blaming in the 21st century</h2>
<p>The history of patient-blaming haunts contemporary conversations around social media use. Patients <a href="https://doi.org/10.1080/15398285.2020.1816803">turn to social media</a> in the face of discrimination and mistreatment, but are further dismissed if they bring up that social media use in the doctor’s office. </p>
<p>The way that <a href="https://www.palgrave.com/gp/book/9781137408396">social media use</a> and endometriosis are both gendered ties into histories of <a href="https://www.harpercollins.com/products/doing-harm-maya-dusenbery">dismissing women</a>, <a href="https://www.endofound.org/he-is-1-in-10-a-trans-man-shares-what-life-is-like-with-endometriosis">trans men and non-binary people</a>. </p>
<p>Although consulting health information often makes patients feel more knowledgeable, empowered and prepared, bringing it up during appointments can lead to conflicts and distrust between the patient and doctor. However, when both parties discuss online health information openly, it can actually improve the patient-practitioner relationship. </p>
<p>Opening up to patient-produced knowledge and representations can help expose the gaps that exist in endometriosis care. As my research shows, people with endometriosis are hungry for information and proper treatments. </p>
<p>Advocacy around the disease has never before been so widespread and accessible. Including the data produced on social media in our endometriosis literature may help us create better futures for both patients and providers.</p><img src="https://counter.theconversation.com/content/160852/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Eileen Mary Holowka receives funding from the Social Sciences and Humanities Research Council (SSHRC).</span></em></p>Histories of mistreatment and misdiagnosis of endometriosis has led people dealing with the disease to turn to the internet for information and community.Eileen Mary Holowka, PhD Candidate, Communication Studies, Concordia UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1574572021-03-25T13:49:07Z2021-03-25T13:49:07ZEndometriosis: three reasons care still hasn’t improved<figure><img src="https://images.theconversation.com/files/391694/original/file-20210325-13-1k2yxob.jpg?ixlib=rb-1.1.0&rect=0%2C4%2C3330%2C1992&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Women wait an average of eight years for diagnosis.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-vector/woman-on-consultation-gynecologist-experiencing-pain-1789709066">Cadmium_Red/ Shutterstock</a></span></figcaption></figure><p>Around <a href="https://www.endometriosis-uk.org/endometriosis-facts-and-figures">1.5 million women</a> in the UK suffer from endometriosis, a painful and debilitating condition that can affect every aspect of a person’s life. The condition causes tissue similar to the lining of the womb to grow elsewhere – including in the ovaries and fallopian tubes – and can result in severe pelvic or period pain.</p>
<p>Treatments for endometriosis include painkillers, hormone medicines and contraceptives, and surgery (laparoscopy and hysterectomy). But some women find these ineffective and <a href="https://www.tandfonline.com/doi/abs/10.1080/01674820400002279">abandon medical treatment</a> or seek <a href="https://www.sciencedirect.com/science/article/abs/pii/S1353611702001385">alternative therapies</a>. In the UK, women also wait an average of <a href="https://pubmed.ncbi.nlm.nih.gov/31328629/">eight years</a> for a diagnosis.</p>
<p>Although a recent small trial of a <a href="https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-021-00797-0">potential new endometriosis treatment</a> has left researchers <a href="https://www.bbc.co.uk/news/health-56245521">feeling hopeful</a>, there is still no cure for this condition – and treatments have progressed little since the condition was first recognised in the 1920s. Here are three reasons endometriosis care has been slow to improve.</p>
<h2>1. Endometriosis is not a priority condition</h2>
<p>Investment in research on endometriosis, and <a href="https://www.ukcrc.org/wp-content/uploads/2015/08/UKCRCHealthResearchAnalysis2014-WEB.pdf">women’s reproductive health generally</a>, remains low compared with conditions such as diabetes, which are <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31344-2/fulltext">similarly prevalent</a> but affect both men and women. </p>
<p>An <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">All Party Parliamentary Group inquiry</a> into endometriosis care found that there have been no significant treatment breakthroughs because endometriosis research hasn’t been a priority. Worse, it means we still don’t fully understand what causes the disease, making it difficult to develop a cure. </p>
<p>Women with symptoms must first see a GP to receive a referral to specialist care for diagnosis and surgical treatment. But <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">more than half of women</a> have to visit a GP more than ten times before they are referred to a specialist. The UK’s National Institute for Health and Care Excellence <a href="https://www.bmj.com/content/358/bmj.j4186.full">urge GPs</a> to better prioritise endometriosis for further investigation to quicken diagnoses. </p>
<h2>2. Endometriosis is poorly understood</h2>
<p>Few people know what endometriosis is. A recent study I co-authored shows only <a href="https://pubmed.ncbi.nlm.nih.gov/33548448/">8% of teenage girls</a> in the UK know about endometriosis. By comparison, <a href="https://pubmed.ncbi.nlm.nih.gov/12609335/">39% know about Parkinson’s disease</a>, even though Parkinson’s affects <a href="https://www.parkinsons.org.uk/sites/default/files/2018-01/CS2960%20Incidence%20and%20prevalence%20report%20branding%20summary%20report.pdf">about a tenth</a> the number of people as endometriosis. </p>
<p>Our study also revealed <a href="https://pubmed.ncbi.nlm.nih.gov/33548448/">27% of teenage girls</a> were unsure if their period was “normal”. This is important, as many adults with endometriosis <a href="https://pubmed.ncbi.nlm.nih.gov/18367178/">didn’t seek medical help</a> when they were younger because they thought their symptoms – like excessive period pain or heavy menstrual bleeding – were typical. It’s <a href="https://static1.squarespace.com/static/5757c9a92eeb8124fc5b9077/t/5d41adfc49a80d0001f41b82/1564585493903/Informed+Choice+Report+Final.pdf">argued</a> that if young women know what typical periods look like, they’ll be better able to identify signs of endometriosis and seek care earlier. This may also quicken their diagnosis.</p>
<p>Research also shows <a href="https://pubmed.ncbi.nlm.nih.gov/19699572/">stigma around discussing menstruation</a> prevents some women from talking about endometriosis symptoms, even with doctors. Further, stigmatisation of menstruation in society as a whole means researchers and doctors are <a href="https://static1.squarespace.com/static/5757c9a92eeb8124fc5b9077/t/5d41adfc49a80d0001f41b82/1564585493903/Informed+Choice+Report+Final.pdf">less interested</a> in pursuing endometriosis as a speciality area, hampering strides in improving care. </p>
<p>Endometriosis is also often mistakenly thought of <a href="https://rowman.com/ISBN/9781793601889/Healers-and-Patients-Talk-Narratives-of-a-Chronic-Gynecological-Disease">as solely a menstrual health condition</a>. There are non-menstruation related symptoms that even some health professionals are <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">not adequately familiar</a> with, including painful urination or bowel movements, non-period related pelvic pain, painful intercourse and fatigue. This means clinicians often <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf">misdiagnose</a> endometriosis.</p>
<figure class="align-center ">
<img alt="Woman sitting in doctor's office speaking with doctor." src="https://images.theconversation.com/files/391696/original/file-20210325-21-jwei21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/391696/original/file-20210325-21-jwei21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/391696/original/file-20210325-21-jwei21.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/391696/original/file-20210325-21-jwei21.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/391696/original/file-20210325-21-jwei21.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/391696/original/file-20210325-21-jwei21.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/391696/original/file-20210325-21-jwei21.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Symptoms may mean endometriosis is not be properly diagnosed.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/healthcare-medical-concept-doctor-psychiatrist-consulting-1305333748">smolaw/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Endometriosis also does not conform neatly to biomedical <a href="https://blogs.bmj.com/bmj/2020/08/11/reclassifying-endometriosis-as-a-syndrome-would-benefit-patient-care/">models of disease</a>, meaning disease extent doesn’t always equate to symptom severity. Some women with endometriosis may have few symptoms, but have extensive “endo” (tissue), whereas others may experience severe pain, but have a small amount of endo tissue. In such cases, some <a href="https://insights.ovid.com/diversity-health-social-care/dhsc/2004/01/010/one-unlucky-ones-delay-diagnosis-endometriosis/7/01212971">women report</a> they’ve been told by doctors that their symptoms cannot be “that bad”, with their accounts seen as less credible than what is detected by currently available measures. This means endometriosis can be <a href="https://blogs.bmj.com/bmj/2020/08/11/reclassifying-endometriosis-as-a-syndrome-would-benefit-patient-care/">misunderstood by health professionals</a>.</p>
<h2>3. Sufferers’ accounts have been dismissed for decades</h2>
<p>In 2001, a colleague of mine interviewed women who suffered from endometriosis. She found that health professionals <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2648.2004.03055.x">trivialised endometriosis symptoms</a> as “typical period pain”. </p>
<p>Nearly two decades on, our research found women still feel <a href="https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-018-0358-5">disbelieved and desperate</a> for relief from their symptoms. <a href="https://discoversociety.org/2020/06/03/its-a-challenge-doctors-perspectives-on-diagnosing-endometriosis-and-improving-care/">GPs confirm</a> women come to them “ready for battle”, expecting not to be believed or made to feel that “it’s all in their head”. </p>
<p>Even the previously mentioned <a href="https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pd">endometriosis inquiry</a> <a href="https://www.theguardian.com/commentisfree/2020/oct/22/endometriosis-women-pain-diagnosis-report-mps">revealed nothing new</a> about the dismissal of endometriosis sufferers’ accounts. This was a missed opportunity to examine how to tackle this problem. It also didn’t adequately include the experiences of people of colour and the LGBTQ+ community. Both communities that, based on existing <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6761838/">health inequalities evidence</a>, are more likely to have their <a href="https://www.health.org.uk/news-and-comment/news/health-foundation-statement-on-racial-inequalities-in-health">symptoms poorly treated</a>. In healthcare, <a href="https://journals.sagepub.com/doi/abs/10.1111/j.1748-720X.2001.tb00037.x">gender biases</a> mean women’s pain isn’t investigated as seriously as men’s. A recent <a href="https://academic.oup.com/jpepsy/article/44/4/403/5273626?login=true">Yale study</a> even showed girls’ pain is taken less seriously than boys’. </p>
<p>The struggle to have endometriosis accounts believed is part of a larger, systematic dismissal of <a href="https://oxford.universitypressscholarship.com/view/10.1093/0195161920.001.0001/acprof-9780195161922">women’s experiences of their bodies</a>. Recent discussions about women’s experiences of <a href="https://theconversation.com/lockdown-violence-and-understanding-womens-anger-157180">sexual harrassment</a>, or Meghan Markle’s account of <a href="https://theconversation.com/meghan-markle-the-uk-press-and-the-problem-of-diversity-156992">racial bias in the media</a> are both examples of women needing to fight to have their story believed. And when health professionals don’t take women’s accounts seriously, it may mean diagnosis delays and ineffective treatments.</p>
<p>Taking endometriosis sufferers’ accounts seriously is the linchpin to improving care. For the long-overdue improvements to endometriosis treatment, diagnosis and care to happen, we need to believe and prioritise the words of endometriosis sufferers. Greater awareness and understanding of the condition will help.</p><img src="https://counter.theconversation.com/content/157457/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Annalise Weckesser does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Taking sufferers’ accounts seriously is the linchpin to improvement.Annalise Weckesser, Senior Research Fellow, Medical Anthropology, Birmingham City UniversityLicensed as Creative Commons – attribution, no derivatives.