It took me 26 years to be diagnosed with endometriosis

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stroke="#222222" stroke-width="1.25"/> </svg> </div> <p class="provider-name" data-js="provider-name">email</p> </a> </li> </ul> </div> </div>  <span class="grid-col grid-col-12 tpl-article__separator tpl-article__separator--double tpl-article__separator--hide-lg" aria-hidden="true"></span> </aside> <div class="grid-col grid-col-12 u-full-bleed u-full-bleed--reset-sm tpl-article__lead-asset " data-lead-asset-layout="small" data-test="article-lead-asset"> <figure data-js="article-body-image" data-test="article-body-image" class="article-body-image section"> <div class="article-body-image__container"> <picture class=" "> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402490256_17321190963170_trans_NvBQzQNjv4BqsAogmHevxtpuCdqPXGE-934ihL9D5G77hk2Gx25ScXg.jpeg?imwidth=1280" media="( min-width: 1600px )"/> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402490256_17321190963170_trans_NvBQzQNjv4BqsAogmHevxtpuCdqPXGE-934ihL9D5G77hk2Gx25ScXg.jpeg?imwidth=960" media="( min-width: 1280px )"/> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402490256_17321190963170_trans_NvBQzQNjv4BqsAogmHevxtpuCdqPXGE-934ihL9D5G77hk2Gx25ScXg.jpeg?imwidth=680" media="( min-width: 768px )"/> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402490256_17321190963170_trans_NvBQzQNjv4BqsAogmHevxtpuCdqPXGE-934ihL9D5G77hk2Gx25ScXg.jpeg?imwidth=350&imdensity=2" media="( min-width: 350px ) and ( -webkit-min-device-pixel-ratio: 2 )"/> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402490256_17321190963170_trans_NvBQzQNjv4BqsAogmHevxtpuCdqPXGE-934ihL9D5G77hk2Gx25ScXg.jpeg?imwidth=350" media="( min-width: 350px )"/> <img src="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402490256_17321190963170_trans_NvBQzQNjv4BqsAogmHevxtpuCdqPXGE-934ihL9D5G77hk2Gx25ScXg.jpeg?imwidth=680" class="article-body-image__source" alt="Bethan Jenkins" fetchpriority="high" data-test="article-body-image-source" width="1736" height="1094"/> </picture> </div> <figcaption class="e-caption u-meta e-caption--hide-small-screens " data-js="caption"> <span data-test="caption"> Bethan was diagnosed with endometriosis at the age 37, decades after flagging severe symptoms to her GP </span> </figcaption> </figure> </div> <div class="grid-col grid-col-12 tpl-article__layout tpl-article__layout--content "> <div class=" " data-js="article-body" data-test="tpl-article-body-recipe"> <div class="tpl-layout__mobile"> <div class="tpl-layout__mobile-byline"> <span class="e-byline e-byline--multi" data-test="byline"> <span class="e-byline__meta"> <span class="e-byline__details"> <a href="/authors/b/ba-be/bethan-jenkins-/" class="e-byline__link" data-test="byline-link" rel="author"> <span class="e-byline__author" data-test="author-name">Bethan Jenkins </span> </a> <div class="tpl-date__mobile outsideByline">  <time class="e-published-date u-meta " datetime="2024-11-20T19:00+0000" data-test="time"> 20 November 2024 7:00pm GMT </time> </div> </span> </span> </span> </div> </div> <div class="articleBodyText section"> <div class="component article-body-text " data-test="article-body-text"> <p>It’s Tuesday morning and I’m on my period. I have a nerve stimulation (Tens) machine strapped onto my stomach, anaesthetic patches on my hips and a heat pad fixed to my back. None of this has touched the sides of my pain. That’s because I have <a class="ck-custom-link" href="https://www.telegraph.co.uk/health-fitness/parenting/fertility/my-battle-with-endometriosis-infertility/">endometriosis</a>, a debilitating condition where tissue similar to the lining of the uterus grows elsewhere in my body. While my symptoms are at their most acute when I’m menstruating, this disease affects my whole body all the time and every aspect of my life.</p><p>At least one in 10 women in Britain <a class="ck-custom-link" href="https://www.telegraph.co.uk/health-fitness/parenting/fertility/gaslit-by-doctors-agonising-endometriosis-symptoms/">live with endometriosis</a>. If that comes as a surprise to you, then based on figures released this week and my own experiences in seeking treatment, you probably know as much about this condition as the average NHS doctor. A report from the Royal College of Obstetricians and Gynaecologists, published on Monday, found that at least 630,000 women are now on the waiting list for <a class="ck-custom-link" href="https://www.telegraph.co.uk/health-fitness/wellbeing/sex/gynaecological-symptoms-womens-health/">gynaecological care</a>, more than double the figures for 2021, reflecting the fact that medics with specialist knowledge of my illness – and other women’s health conditions – are few and far between.</p><p>My health struggles started when I was just 11 and my periods began. I was losing enormous amounts of blood, meaning I always needed to be near a bathroom, and intense cramping would mean that I’d spend a lot of time in bed. We’d been taught about the menstrual cycle at school, but not that heavy, debilitating periods were not normal, so I didn’t understand the difference between normal bleeding and what was happening to me.</p><p>Worse than the pain was how isolated I often felt – I would have to cancel plans at the last minute, lying in my room in crippling pain while my friends went out to the cinema or to the park.</p><p>This intense pain was something that I conditioned myself to put up with. After all, my doctor had told me that periods were meant to be painful and that I was just unlucky. It wasn’t until 2002, when I had to take a year out of university because I’d started passing out from the pain, that I realised that things might not be normal. My younger cousin, who had a friend who was diagnosed with endometriosis, suggested that I might have the condition too. My parents and I had never heard of it, with me assuming that my horrible periods were just something I had to deal with every month.</p><p>That was when I asked my GP to refer me to see a specialist. After explaining my symptoms, I was fobbed off with the <a class="ck-custom-link" href="https://www.telegraph.co.uk/health-fitness/wellbeing/sex/contraceptive-pill-myths/">contraceptive Pill</a> to “regulate” my periods: first the combined oestrogen and progesterone pill, then progesterone only, after that a contraceptive injection and finally the coil.</p><p>Nothing helped, and in fact, they all made my symptoms worse. I was also left to deal with a plethora of side effects: mood swings, weight fluctuations and migraines, all on top of the pain. Endometriosis is a condition that affects my whole body: my symptoms also meant that I was often uncomfortably bloated, and always either constipated or struggling with severe diarrhoea. Still doctors insisted that I was just unlucky and that some people have periods that are more difficult than others. I started to doubt my own pain and symptoms, and wondered whether I was, in fact, just a hypochondriac.</p><p>Throughout different GP visits in my 20s I was repeatedly told that I had a “low pain threshold”, that it was all in my head, or that I just needed to change my diet. It took two years of begging doctors to be sent for my first laparoscopy, a keyhole surgery that allows doctors to explore your abdomen to find endometriosis.</p> </div> </div> <figure data-js="article-body-image" data-test="article-body-image" class="article-body-image section"> <div class="article-body-image__container"> <picture class="article-body-image__source "> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402491122_17321201884670_trans_NvBQzQNjv4Bq1t6jht73OsfjWTqNNnyt-cwZgCewa-xkrckcIXHk6m8.jpeg?imwidth=960" media="( min-width: 1280px )"/> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402491122_17321201884670_trans_NvBQzQNjv4Bq1t6jht73OsfjWTqNNnyt-cwZgCewa-xkrckcIXHk6m8.jpeg?imwidth=680" media="( min-width: 768px )"/> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402491122_17321201884670_trans_NvBQzQNjv4Bq1t6jht73OsfjWTqNNnyt-cwZgCewa-xkrckcIXHk6m8.jpeg?imwidth=480&imdensity=2" media="( min-width: 350px ) and ( -webkit-min-device-pixel-ratio: 2 )"/> <source srcset="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402491122_17321201884670_trans_NvBQzQNjv4Bq1t6jht73OsfjWTqNNnyt-cwZgCewa-xkrckcIXHk6m8.jpeg?imwidth=480" media="( min-width: 350px )"/> <img src="/content/dam/health-fitness/2024/11/20/TELEMMGLPICT000402491122_17321201884670_trans_NvBQzQNjv4Bq1t6jht73OsfjWTqNNnyt-cwZgCewa-xkrckcIXHk6m8.jpeg?imwidth=350" loading="lazy" alt="Bethan in hospital" width="1875" height="1875"/> </picture> </div> <figcaption class="e-caption u-meta " data-js="caption"> <span data-test="caption"> Bethan is currently waiting for her third surgery in three years for deep infiltrating endometriosis </span> </figcaption> </figure> <div class="articleBodyText section"> <div class="component article-body-text " data-test="article-body-text"> <p>When my results came back, in 2004, I was told that I didn’t have endometriosis, but my symptoms persisted. I asked for a second opinion and had several ultrasound scans and three further laparoscopies on the NHS, all of which came back “normal”. It was only in 2024, after requesting and reading my medical notes from that first operation two decades ago, that I learnt that my surgeons had actually identified “no significant endometriosis”. Some tissue had been found after all, but had not been deemed significant enough to treat.</p><p>Had I known more about the condition then, I could have advocated for myself more and insisted on having surgery to remove the endometriosis that was found and slow down its development. Today I suffer from stage four endometriosis, and I am currently waiting for my third surgery in three years for deep infiltrating endometriosis of the bowel and rectum.</p><p>You can blame Covid backlogs for huge waiting lists, but I’m certain that this has at least as much to do with the experiences of women like me who have been dismissed only for their symptoms to worsen.</p><p>In 2007, as I kept pushing for a diagnosis, a doctor told me that I should consider having a baby, as giving birth would “settle my periods”. This was a cruel twist of the knife as well as terribly misguided advice. Because doctors had failed to diagnose me in a timely manner, and never asked me whether I wanted children of my own, I never had the chance to freeze my eggs, which many women with endometriosis are advised to do.</p><p>Had it been made clear to me that taking this route could protect my ability to have children later in life, I would have jumped at the opportunity in a heartbeat. I learnt this year, aged 39, that I will never be able to have children because of the damage the endometriosis has caused to my ovaries. As I’m single, I had been considering whether to have a child through IVF with a sperm donor. This scenario must be shockingly common, as it takes an average of eight years and 10 months from a first GP appointment for a woman to be diagnosed with endometriosis.</p> </div> </div> <div class="cta teaser section"> <section> <section> <div id="cta-9dc43c713f" class="cmp-teaser"> <div class="cmp-teaser__content " for="full-content-link"> <p class="cmp-teaser__pretitle" data-test="cmp-teaser__pretitle">Recommended</p> <div class="cmp-teaser__action-container " data-track-wrapper="CTA_cta__link"> <a class="cmp-teaser__title true" href="https://www.telegraph.co.uk/health-fitness/parenting/fertility/gaslit-by-doctors-agonising-endometriosis-symptoms/" data-test="cmp-teaser__title">I had a hysterectomy at 37 after years of agonising endometriosis </a> <div> <a class="cmp-teaser__link cmp-teaser__action-link cta__link" data-test="cta__link" href="https://www.telegraph.co.uk/health-fitness/parenting/fertility/gaslit-by-doctors-agonising-endometriosis-symptoms/" data-cmp-clickable data-track-txt>Read more<div class="arrow__dark" data-test="arrow__dark"> <svg class="recommended" xmlns="http://www.w3.org/2000/svg" width="10" height="10" viewBox="0 0 11 12" fill="none"> <path fill-rule="evenodd" clip-rule="evenodd" d="M10.4066 5.59343L5.4065 0.593411L4.59333 1.40659L8.6118 5.425H0V6.575H8.61182L4.59334 10.5934L5.4065 11.4066L10.4066 6.40661L10.4066 5.59343Z" fill="#222222"/> </svg> <svg class="button__only" xmlns="http://www.w3.org/2000/svg" width="12" height="12" viewBox="0 0 13 14" fill="none"> <path fill-rule="evenodd" clip-rule="evenodd" d="M12.5657 6.43433L6.56558 0.434311L5.43422 1.56569L10.0686 6.2H0V7.8H10.0686L5.43422 12.4343L6.56558 13.5657L12.5657 7.56571L12.5657 6.43433Z" fill="#222222"/> </svg> </div><div class="arrow__light" data-test="arrow__light"> <svg xmlns="http://www.w3.org/2000/svg" width="12" height="12" viewBox="0 0 13 14" fill="none"> <path fill-rule="evenodd" clip-rule="evenodd" d="M12.5657 6.43433L6.56558 0.434311L5.43422 1.56569L10.0686 6.2H0V7.8H10.0686L5.43422 12.4343L6.56558 13.5657L12.5657 7.56571L12.5657 6.43433Z" fill="white"/> </svg> </div> </a> </div> </div> </div> </div> </section> </section></div> <div class="articleBodyText section"> <div class="component article-body-text " data-test="article-body-text"> <p>A lack of diagnosis cost me in other ways, too. Though I love the job I have now as a script editor and producer, I used to be a secondary school teacher. I left it behind in 2016, after years spent worrying about whether I would have a leak in front of a class full of teenage boys, and struggling to keep their rowdiness in check while my pain crept in.</p><p>My breaking point came in 2021. I had been begging my local health board for an MRI scan, which can detect deep infiltrating endometriosis that ultrasounds can’t pick up. My doctor told me that I wouldn’t be allowed an MRI because four laparoscopies had discovered nothing, and that my only option was a treatment called GNRH agonist, which would put me into a “temporary” <a class="ck-custom-link" href="https://www.telegraph.co.uk/health-fitness/wellbeing/menopause/menopause-brain/">menopause</a> at 35.</p><p>I wasn’t told whether this treatment was reversible, or how it might affect my chances of conceiving in the future. The doctor’s only reasoning was that it would show whether my problems were “gynaecologically rooted”. All of this news was delivered on the phone, while I was at work, having only just started in my current job.</p><p>To say I was devastated was an understatement. I was at the end of my tether, and I was still none the wiser about what was causing all this pain and a myriad of other symptoms, including rectal spasms, pelvic pain, heavy legs and <a class="ck-custom-link" href="https://www.telegraph.co.uk/health-fitness/wellbeing/sleep/perrin-technique-fatigue-syndrome/">extreme fatigue</a>. One of my colleagues saw that I was struggling, and when I told her what had happened, she recommended a private hospital in Birmingham that she had visited before. It seemed to me and my parents, who had supported me through all of my dealings with doctors, that this was a no-brainer.</p> </div> </div> <div class="cta teaser section"> <section> <section> <div id="cta-d8bcd50918" class="cmp-teaser"> <div class="cmp-teaser__content " for="full-content-link"> <p class="cmp-teaser__pretitle" data-test="cmp-teaser__pretitle">Recommended</p> <div class="cmp-teaser__action-container " data-track-wrapper="CTA_cta__link"> <a class="cmp-teaser__title true" href="https://www.telegraph.co.uk/health-fitness/nhs-private-hospitals-best-england-healthcare-near-me-search/" data-test="cmp-teaser__title">Find the best hospital care near you </a> <div> <a class="cmp-teaser__link cmp-teaser__action-link cta__link" data-test="cta__link" href="https://www.telegraph.co.uk/health-fitness/nhs-private-hospitals-best-england-healthcare-near-me-search/" data-cmp-clickable data-track-txt>Read more<div class="arrow__dark" data-test="arrow__dark"> <svg class="recommended" xmlns="http://www.w3.org/2000/svg" width="10" height="10" viewBox="0 0 11 12" fill="none"> <path fill-rule="evenodd" clip-rule="evenodd" d="M10.4066 5.59343L5.4065 0.593411L4.59333 1.40659L8.6118 5.425H0V6.575H8.61182L4.59334 10.5934L5.4065 11.4066L10.4066 6.40661L10.4066 5.59343Z" fill="#222222"/> </svg> <svg class="button__only" xmlns="http://www.w3.org/2000/svg" width="12" height="12" viewBox="0 0 13 14" fill="none"> <path fill-rule="evenodd" clip-rule="evenodd" d="M12.5657 6.43433L6.56558 0.434311L5.43422 1.56569L10.0686 6.2H0V7.8H10.0686L5.43422 12.4343L6.56558 13.5657L12.5657 7.56571L12.5657 6.43433Z" fill="#222222"/> </svg> </div><div class="arrow__light" data-test="arrow__light"> <svg xmlns="http://www.w3.org/2000/svg" width="12" height="12" viewBox="0 0 13 14" fill="none"> <path fill-rule="evenodd" clip-rule="evenodd" d="M12.5657 6.43433L6.56558 0.434311L5.43422 1.56569L10.0686 6.2H0V7.8H10.0686L5.43422 12.4343L6.56558 13.5657L12.5657 7.56571L12.5657 6.43433Z" fill="white"/> </svg> </div> </a> </div> </div> </div> </div> </section> </section></div> <div class="articleBodyText section"> <div class="component article-body-text " data-test="article-body-text"> <p>A month later I finally had an MRI scan, which identified the suspected endometriosis I’d asked so many NHS doctors to consider. I was finally diagnosed with endometriosis at the age of 37. I took my findings back to my NHS consultant, who was very unsympathetic. He told me that I had wasted his time and that he couldn’t speak to me because I was “too hysterical” to listen to what he said in my last consultation.</p><p>But even if he’d sent me for surgery then, to remove the endometriosis, I would have been staring down the barrel of a two-and-a-half-year waiting list for an operation. So my parents paid for me to have surgery in Birmingham just two months later in June 2022. My employer also contributed £1,000 towards the cost as they understood the toll my illness was taking on my life.</p><p>After that first surgery, I felt like a completely different person, like the “old Bethan” was back. My social life was better – the pain had worsened as I aged, and I’d missed going out with friends, getting dressed up and looking and feeling my best. But that relief only lasted for six months, before I found that my symptoms were once again leaving me in agony.</p><p>A second surgery in October this year to untwist my ovaries, which were fused to my uterus, and to remove the endometriosis that was fusing my bowel to my uterus, has brought me no relief, and I am now awaiting a third surgery to remove the endometriosis which has started to infiltrate my bowel. But I know that this is not sustainable – the scar tissue left by surgery can actually cause womb-like tissue to “stick” to it, and it’s unrealistic to have surgery every year or two for temporary pain relief.</p><p>I am extremely fortunate that my parents were able to spend at least £20,000 on my <a class="ck-custom-link" href="https://www.telegraph.co.uk/health-fitness/wellbeing/stress/private-gp-versus-nhs-appointment-waiting-times/">private healthcare</a> in the last four years alone, because the NHS can’t give me the care that I desperately need. We felt that we had no other choice. Like so many others, I have been let down. I look well on the outside, but internally I’m in turmoil, and my organs are still being damaged.</p><p>All of this feels so tragically unnecessary. Had I been taken seriously and diagnosed quickly in my 20s, I know that I wouldn’t be left in this position today, and I may even have been able to conceive. It breaks my heart to know that so many more women will continue to find themselves in my position, unless there is a serious change to educate all doctors about gynaecological health. Record-high waiting lists should be treated as a national emergency, not the result of a “women’s problem” that only exists in our heads.</p><p><em>As told to Lauren Shirreff</em></p> </div> </div> <div class="html-embed section" data-test="html-embed"> <span></span> <div id="wrp-77a321f7-b53c-46b3-9cc1-e3ca5efcc704" class="wrp-77a321f7-b53c-46b3-9cc1-e3ca5efcc704 part-wrp" style=""><iframe id="77a321f7-b53c-46b3-9cc1-e3ca5efcc704" data-type="particle" src="https://cf-particle-html.eip.telegraph.co.uk/77a321f7-b53c-46b3-9cc1-e3ca5efcc704.html?direct=true&id=77a321f7-b53c-46b3-9cc1-e3ca5efcc704&template=cls" class="tmg-particle breakout-box wrp-77a321f7-b53c-46b3-9cc1-e3ca5efcc704 " title="What is endometriosis?" data-business-type="editorial" loading="eager" scrolling="no" frameborder="0" allow="web-share" style="width: 100%; min-width: 100%; border: none; position: relative; display: block; padding: 0px; margin: 0px;"></iframe><div style="display: none;" class="particle-newsletter-overlay"></div></div><link rel="stylesheet" type="text/css" href="https://cf-particle-html.eip.telegraph.co.uk/77a321f7-b53c-46b3-9cc1-e3ca5efcc704/css/cls.css"> </div> <div id="recipe-enabled" data-recipe-enabled="true"></div> </div> <div class="u-separator-top--loose u-separator--branded">  <aside id="comment" class="comment" data-comment-config="{"authorMode":false,"articleCommentingConfig":true,"convConfig":{"articleId":"A3l1TDG6xn0g","viafouraEnvironmentId":"00000000-0000-4000-8000-010fdf3f0a45"}}" data-js="comment" aria-label="Commenting" data-test="join-conversation-section"> <div class="comment__header-container" data-js="comment-header-container" data-test="comment-header-container"> <h2 class="comment__header">Join the conversation</h2>  <div class="comments__social">  <button class="comments__button comment__show-button e-button e-button--large e-button--centered-text" data-js="comment-load" data-label-loading="Loading..." data-test="comment-load" data-event="showComments"> <div class="comment__show-text">Show <span class="e-comment-count__number" data-js="comment-count"> </span> comments <svg class="e-button__icon comment__toggle-icon e-button__icon--right e-button__icon--large" viewBox="0 0 13 7" xmlns="http://www.w3.org/2000/svg"> <path id="Vector 356" d="M1 0.749911L6.49999 6.25L12 0.749912" stroke="white" stroke-width="1.17857" stroke-linejoin="bevel"/> </svg> </div> </button> <div class="comment__policy-container comment__policy-mobile"> <div class="comment__policy" data-test="comment-policy"> The Telegraph values your comments but kindly requests all posts are on topic, constructive and respectful. 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