Search endometriosis experiences

After a year of doubting my own mental health — because doctors kept telling me it was “all in my head” without even doing an ultrasound or scan — I was finally diagnosed with endometriosis. By the time it was found, the disease had spread to my bladder and colon, right next to my ovary. There was even a moment when my doctor warned that it might be cancer and that I could lose my uterus. Because of that possibility, I went through egg freezing before surgery. After the operation, I was left with nerve damage, and since then I’ve been living with constant pain. I’m currently continuing with physiotherapy and trying to rebuild a sense of normal life, even though it’s an ongoing process.

I was diagnosed in October 2025 through the key hole surgery I had to beg for. My mum had noticed my severe symptoms since I had my first period over 10 years ago and from then it has worsened and I had been put on different contraceptive pills (over 14 different ones) and since my surgery I’ve not changed a lot with my symptoms and have been put on the injection.

Still waiting for a diagnosis. It’s been about 5 years since I “self diagnosed” myself due to the healthcare failing me. I discovered endometriosis on my own and figured it out myself rather than a doctor doing it. It’s quite disappointing that many women need to self diagnose and take that to the doctors, as they never suggest endo on their own. It’s making my life hard, and life shouldn’t be this hard.

I was diagnosed with stage 4 endometriosis and adenomyosis in 2012 after years of painful periods that were dismissed as “normal.” Eventually surgery confirmed deep infiltrating endometriosis affecting my bowel, and I had a 20 cm bowel resection and removal of endometriosis cysts Over time, the disease progressed to include rectal nodules, bilateral endometriomas and adenomyosis, and in 2025 I was hospitalized with life-threatening anemia (Hb 2.6) due to extreme menstrual bleeding and required blood transfusions. Living with endometriosis has meant pain scores of 10/10 during my periods and with intercourse, chronic fatigue, bowel symptoms, heavy bleeding (soaking pads repeatedly), and the heartbreak of infertility despite IVF. It has affected my body, my marriage, my work, and my mental health including severe mood reactions to hormonal treatments. I am 46 and currently on a waiting list for major surgery to remove my uterus and both ovaries, and to remove part of my bowel again due to deep rectal disease. The endometriosis is also affecting my kidneys and ureters, causing hydronephrosis and hydroureter from external compression If you think you might have endometriosis: trust your pain. Heavy bleeding, extreme cramps, bowel pain, pain with sex, and exhaustion are not “just bad periods.” Advocate for yourself, ask for imaging, and if needed, seek a specialist endometriosis center. Early diagnosis matters. You deserve to be heard.

I have been arguing with doctors since I was 13. I have always suffered with heavy, painful periods, anemia, back pain and sickness. I am lucky to have had 3 beautiful children, but did experience miscarriages. It was only at the age of 35 that I became completely fed up and called my GP relentlessly until they made a gyne referral to shut me up. The last 3 years have been a rollercoaster. I had a diagnostic lap 2 years ago and it made everything worse. She told me I had stage 2 endo and my bowel was clear. I took out a large loan because I was missing too much time off work and life- and had a major surgery with a specialist centre last year. I was diagnosed with stage 4, which had infiltrated all areas of my bowel. Since then I’ve been diagnosed with POTS and I’m being investigated for tumours on my bowel which may/may not be related. I’m exhausted. For having to fight and advocate for myself for so long, and to still have so far to go. But because of the conversations I’ve had with friends and family, I’ve had 4 people I know demand referrals and receive diagnosis! Every day is a struggle for me right now. It’s horrendous waking up and not knowing if it’s going to be a good or bad day. My last surgery has helped a lot (I didn’t realise you weren’t supposed to have cramps and pain the day after having sex!) but my body still has some recovery to go through

I first had bowel-related symptoms and bloating at 16, was diagnosed (but not really helped at all) as having IBS in my mid 20s, told I ‘probably’ had endo in my mid 30s although all scans were clear. After pushing again I finally got referred for a laparoscopy - which I had 2 days ago, age 43. It’s found severe endometriosis, stage 3/4 - affecting a lot of organs and my womb was fused to my bowel. That’s 27 years of pain, discomfort and feeling like I was a fraud or a hypochondriac. Feel so happy/relieved/validated now but also cross at being so let down for so long.

I was referred to Gynae in Jan 2019 after 2 and a half years of left sided pelvic pain and worsening periods. The doctor I saw at my initial appointment didn’t think it sounded like endo but they decided it would be best to do a laparoscopy anyways. I was diagnosed with endometriosis in September of 2019 aged 21. I did consider myself lucky that I was only experiencing symptoms for 3 years before my diagnosis. But then as I learned more about endo and the symptoms it can have, I realize that my symptoms were vague but started much much earlier. Aged 5 I had to have a camera into my bladder and into my vagina as I was complaining of stomach pain and had vaginal discharge from that age. Aged 12, Gastro symptoms began and aged 16 I had my first of 3 colonoscopies. Though I’ll never know if those symptoms were endometriosis related or not, my journey with health has spanned across the past 21 years of my life. And I’m sure it will continue for 20+ years to come.

My experience for several years since the age of around 15 has included extreme pain on day 1 of my cycle, although this has tended to happen at most 2-3 times per year. Apart from this, I have sometimes had bad but not excrutiating pain several times a year on day 1. Other times my period comes along and is pain-free, or the pain is minimal. The excrutiating pain, although it isn't as frequent or long-lasting as what some people with endometriosis have, is still excrutiating in itself, and when it has happened, it has meant I have been doubled over in what feels like a stabbing pain which painkillers have not touched. Going to the doctors did not help much overall. I was told "I was likely just one of the unlucky ones with painful periods" and my symptoms "did not sound like endometriosis because I don't have heavy periods", although to be fair I was able to request an ultrasound, which didn't show anything but gave me more knowledge at least about my body, and it was reassuring to be listened to in terms of my request. It has been tiring at times constantly trying new things to manage pain, but I remain hopeful and am doing my best to keep on learning about my body, supporting my needs and advocating for myself.

I was experiencing blood in my stool that synced up with my menstrual cycle. This was bleeding from the rectum when going to the toilet and sometimes on its own. I also had heavy periods and pain, but it was the bleeding that made me see a doctor. I have had colonoscopies that have not shown anything else and it’s suspected to be endometriosis growing on my bowels. The wait for gynocologist has been 9 months so far. I was put on the combined pill which has helped to manage my symptoms, however I have developed pulmonary embolisms (blood clots in both of my lungs) and so have had to stop taking the pill and symptoms have returned. The risk of blood clots is extremely low and the combined pill was a good option for reducing effects of endometriosis.

Experienced extremely heavy bleeding during my period that would last 7-8 days. Became anaemic for a few years due to my extremely heavy flow. Pain wasn’t too bad to begin with but got worse over the years. Got prescribed the pill for about 10 years. It helped somewhat but not enough so I had to do continuous pill taking to only have a couple of withdrawal bleeds a year. After 10+ years of trying to advocate for myself that something wasn’t right, I was referred to a gynaecologist. Finally had a laparoscopy and was diagnosed with Stage 1 endometriosis. Now trying the Mirena Coil to help reduce my heavy bleeds.