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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.

I was diagnosed by two different gynaecologists. I have been managing my symptoms with the pill as other natural remedies did not work.

I experienced severe nausea , along with diarrhea and horrendous period pain . I had a laparoscopy and was told I had stage 1 endometriosis on the muscles supporting the uterus - for which the most common symptom is bad pain

My periods were very heavy and painful right from the start at age 13. I was put on the pill by my GP aged 17 but not investigated. This made things manageable regarding bleeding and flooding, although I had all of the other symptoms described and my periods were always 7-10 days long. Aged 30, the pill just stopped controlling everything and I was bleeding all of the time. I tried different pills, mirena coil (helped for about 18 months, then a replacement coil had to be removed after 6 weeks due to intense pain), until eventually I stopped everything. I was in a job where I could manage my own diary and would schedule/re-schedule appointments accordingly but was always told by the medical profession to just 'live with it'. Eventually, aged 48, I had a hysterectomy and was diagnosed with endometriosis and adenomyosis. To say I felt let down and angry is an understatement - I finally started my life aged 48.

I've had severe back en stomach pain continuously throughout my life, since the age of 14. Periods started only because I got on the pill at age 17. Periods were extremely painful, felt terribly ill everytime for at least 10 days. Got irritable bowl syndrome, intermittent fever syndrome, extreme back pain. The pain kept me up at night for 8 years. Had to stop working. Had surgery 6 months ago: it's a piece of cake compared to the suffering before. The backpain was instantly gone. Had a mass on my uterus and the endometriosis in my uterine bands flipped my uterus, a very painful condition. Endometriose caused adhesions in my lower pelvis. Releasing these adhesions had major impact on bowl symptoms and abdominal and lower back pain.

After around 4 years of being on naproxen (after trying over the counter pain relief) and being diagnosed with “dysmenorrhea/bad period pains” I asked my GP to refer me a gynaecologist! Alongside the severe pains I was experiencing on and around my period, I also experienced vomiting and fainting episodes. I had previously been diagnosed with IBS but have noticed this seems to be at its worst when I am ovulating. After being referred to a gynaecologist and having a laparoscopy, stage 1/2 endo was found. Since surgery I had around 6 months of lessened symptoms and then the pain has gradually increased again over time. However, I have noticed my GP now take my symptoms a lot more seriously following my diagnosis and are more keen to keep on top of my chronic pain.

I had ovulation and period pain since I started periods at 14, accompanied by vomiting and diarrhoea, but initially it only started the day before my period and only lasted the first 2-3 days. My symptoms gradually got worse, with the pain starting earlier and earlier, then I started getting severe IBS type symptoms. I later developed pain after sex. In the year before diagnosis, I started getting fevers and severe nausea usually during my period, but sometimes a week or so before or after. Eventually I developed a groin swelling along with the fever, my GP insisted I go to A&E but I was told I'd wait all night so I went home and next day had a private MRI and then laparoscopic diagnosis. In Northern Ireland the waiting lists are very long for endometriosis diagnosis, so I self funded private appointments and surgery. I am currently using the combined pill to stop my cycles to hopefully keep the endometriosis lesions from growing and to control my symptoms. I also avoid alcohol and foods high in saturated fat as ingesting those always flares my pain. I eat a plant based diet as dairy causes constipation which also makes my pain worse, and the additional fibre in a plant based diet also helps with the bowel symptoms.

Ovarian cyst at 21 lead to diagnosis of stage 4 endo. Birth control pill managed my symptoms for years, however, needed hysterectomy this year aged 36 for CIN3 recurring cells. Since surgery and off of birth control have experienced a high level of daily endo related pain.

I was diagnosed during Covid, I was referred to a private hospital via the NHS. It was the first time I was really listened to and felt validated. My symptoms became severe in my early 20s and I was diagnosed at 32. Endometriosis is not cyclical, it’s every day. I had a coil which stopped by periods but I had pelvic pain every day. I bled every time I had inercourse and I have IBS symptoms. I’ve had to have a hysterectomy to stop the constant pain and slow down growth.

Very very painful