Search endometriosis experiences

I first got my periods when I was 13, and for the first two years they were fairly regular but extremely painful. Then when I was 15, I started bleeding non-stop. After 3-4 months of heavy bleeding, I became visibly anemic and my doctor put me on Birth Control (BC), iron, and B12. I can't complain too much because this did give me my life back, I was able to finish school and university. Somewhere between 8-10 years I started noticing off symptoms, primarily related to my gut. I was having difficulty with bowel changes (constipation and hemorrhoids), blood clots on periods, anal soreness around my cycle and sometimes even a "lump" forming, increasing food sensitivity, joint pain and frequent cold symptoms, vaginal dryness, bleeding during sex, and a sort of numbness where I couldn't feel the upper or lower range of my emotions. This was Rigevidon. I decided to come off the pill, I didn't need to contraceptive side and I wanted to understand my body - it had also been circa 10 years and I don't think it was made to ever be taken that long, and I wasn't sure how healthy it was to never ovulate or have a period. Between 25-28 years of age, I cycled between coming off the pill -> 3 months no periods -> 2-3 normal periods -> symptoms flaring. After a shockingly unconcerned GP, I went to see a Gynae privately who referred me into the NHS for investigations. They found PCOS and I went back on the pill, I think I tried Millinette, Microgynon, maybe a Levonorgestrel - the longest being Microgynon. // At 27 I had had enough of not feeling like myself, I decided to come off the pill and stick with it, to try to understand my body and give it a chance to get a normal cycle. Well, now, I had the old symptoms and a host of NEW symptoms - the constipation was worse, the histamine reactions were more frequent, my face was inflammed with something between eczema-dermatitis-acne, I woke up every night between 2-4am to pee and would have fatigue crashes between 2-4pm, I was "spotting" (more like bleeding) every single day and had a whole 2 months of daily (uterine) blood clots. There was probably more, these are the ones I remember most vividly. I don't mention pain much due to the lack of or infrequent ovulation, sometimes I get these awful pains that ranges between normal cramping, to fully body pain where I cannot think or breath properly, to constant pelvic pain, or throbbing, nausea, an occassional sudden random lightening pain and I can only assume this is my body trying to ovulate or get a true period going. // After a post-holiday flare where I gained 10kg in the space of 2 months, I went on the Mounjaro (GLP1 injections). Going on the GLP1, microdosing for 5 months, actually stopped the bleed and lowered inflammation enough that all my symptoms started disappearing. This however isn't a long term solution, I weighed under 70kg (I'm only 5'2) so I couldn't take it forever - I got back to my normal weight and stopped the injections. Less than 1 week after stopping the GLP1, the symptoms slowly started coming back. The bleeding and bowel changes were the worst, I was passing blood clots the size on a golf ball and I got a perineal abscess. This was drained however for whatever reason, developed a fistula which I'm currently waiting for surgery on. // The fistula surgery prep requires an MRI - this prompted me to ask my gynae team to request for a combined MRI of the pelvic + perineum area. Long story short, I still have PCOS but I also have Adenomyosis (sister condition to Endometriosis). Honestly, I'm still processing this, it feels like a betrayal from my own body. There is not much research on Adenomyosis, my options are BC or hysterectomy as far as the NHS is concerned. An MRI can't confirm endometriosis so that is still in question, the gynae is reluctant to put me on the surgery list, but since its a 2 YEAR waiting list I was insistent to go on. I am now looking at BC options, my fear is that if I don't go on BC that I will make the lesions worse and these endo-like tissues can metastasise; on the other hand, I've made a tonne of lifestyle changes and it's genuinely helped. I have no bleed days, my skin is clearing up, I presume I had "leaky gut" but its now becoming more stable, less histamine reactions, and bowel movements are still a bit touch and go but no longer deliberating. The issue is, this comes in phases, maybe a couple days of calm and then it starts up again. A big improvement from January but by no means a normal, functional body. // The research isn't nearly enough to make an informed decision. I can't tell if the lack of ovulation is caused by adeno/endo (body doesnt feel safe to ovulate) or if the adeno is caused by the lack of ovulation (No Ovulation -> Endometrial lining keeps thickening -> unstable endometrial -> breaks away). I don't know how or why it started at 13-15 to tackle the root cause of it. My ideal is a pill that could boost progesterone and thin the endometrial, but not stop ovulation completely. I want my body to have a chance at figuring it out, also the only way I've been able to make lifestyle changes is by tracking symptoms, how will I know what's working if I just mask it? // The choices are overwhelming, and the NHS don't seem interested in investigating at all beyond BC's. I'm still figuring it out. At this point I've seen GP, dermatology, gynaecology, endocrinology, colorectal, gastroenterologist, acupuncturist, chiropractor. I may do a short term course of progesterone for 6 months whilst I deal with the fistula just to give my body a break, and then see an adeno/endo specialist whilst I decide about the (potential) laparoscopy. If they don't find endo, then a painful surgery has made no difference to treatment. If they do find endo, this could dramatically improve my life quality. If the endo comes back, then all this will have been for nothing. Even if they find endo, I still have adeno so I still need BC. //

I've always had painfull periods, they started when i was 12 years old. I've been to my GP for years because of these periods and was put on the pill, the hormonal patch, POP, and now the Zoely pill. Everyday I'm dealing with cramps, bloating, fatigue, headaches and randomly with tooth pain, jaw grinding, hip pain and brain fog. Wish to get a hysterectomy but my gynecologist says I'm too young (im 27, and I'm absolutely sure i never want children).

I started bleeding for 11 days every period and extreme pain leading up to period and during first few days.

im currently waiting to be tested so cant really imput but pls help me guyss

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.