Search endometriosis experiences

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

My periods were regular from the age of 10-16; every three weeks nearly to the day.. When I was 16/17 they became irregular and extremely heavy and painful. I was changing my pad every 1-2 hours and passing large clots. This made me anxious to leave the house on heavy days. Everyone in my family who has periods have all had problems so I thought it was normal and I didn't know better. Doctors said it was probably stress and put me on the pill. I remained on the pill with no questions until I was 24 which is when I began to suspect something was wrong. My pain became worse which included: pelvic pain most of the month, severe bloating, fatigue, nausea, migraines, pain in my back and legs, and pain going to the toilet, especially bowel problems. I fought to have a laparoscopy in April 2019 and was told there was nothing wrong with me when I woke up after the surgery. The gynaecologist who performed the procedure suggested it was a bowel issue and probably IBS. After this, no doctors listened to me even though I was researching every condition I could think of that might be related. I think I saw nearly every GP in the practice, yet not one would refer me back to gynaecology. In 2022, I was fortunate that I was able to see a private gynaecologist who listened to me and agreed that my symptoms were "textbook" endometriosis. She performed a laparoscopy with excision and formally diagnosed me. It was such a relief to be diagnosed because I knew that I wasn't inventing my symptoms and now I have something concrete to work with. After my my second surgery, I was able to manage most days with minimal pain. I began to make plans again and started to reclaim a social life and hobbies. However, earlier on this year my pain levels started to increase. I've recently left my retail job as it was too much to stand all day and am currently seeking a remote or hybrid role to manage my health better. People don't like to hear about others' chronic health problems so I don't talk about it much. However, most of my friends and family are supportive. On a good day I barely notice my symptoms, however on a bad day I start thinking of ways in which I can persuade my GP to refer me back to gynae. I didn't plan on having another surgery so soon, so I'm hoping it won't become an issue just yet.

I lived with extremely painful and heavy periods right from my first one at age 12. The other girls in my class would be sore but I would be in agony, bent double and sobbing in the toilets when a period came. I was basically told I was being dramatic and that every girl has periods, so to just ‘get on with it’. I was on contraception at 13 to try and control the pain. I had significant bladder pain and infections starting when I was late teens and had multiple, invasive and painful procedures on my bladder over a number of years as it was thought I may have painful bladder syndrome/interstitial cystitis. I was hospitalised twice in my early 20s with burst ovarian cysts and was told ‘it’s only a 5cm cyst so it shouldn’t be painful. I don’t know what the issue is’. The hospital then forgot to send any information to my GP and when they took blood again at my surgery, I had them calling within 24 hours to put me immediately onto antibiotics as my inflammation markers were sky high. I came off contraception when I was 30 to try for a baby. I was bent double in agony at this stage and really struggling to function at all. The pain was constant and not just around my period. I was advised the waiting time for gynaecology was months and I couldn’t stand it anymore, so I paid for a consultation. The consultant was 60-70% sure it was endometriosis. I’d never heard that before and this wasn’t mentioned in any diagnoses previously. I then paid for a surgery as the waiting time was 2 years on the NHS and they found stage 3 endometriosis over my entire pelvic region. I had excision surgery a year after this diagnosis and then a year following that a total hysterectomy as the pain wouldn’t go. Thankfully I did manage to conceive prior to that decision, but I will never be able to give that child a sibling as a result. Endometriosis ruins lives and it’s not taken seriously enough. The treatments for it are contraception or nothing and now I’m in the menopause, it’s been extremely difficult to access information about this too. Women’s health deserves more attention and I hope that by raising awareness about the signs and symptoms of this debilitating condition, others may get checked out quicker and push for some early support. Living in constant pain is exhausting and it’s easy to feel alone, but no one with this condition is alone. We’re all here with each other, getting by as best we can.

I was diagnosed with a MRI scan followed by a laproscopy and have just had my 2nd laproscopy. My periods started aged 11 and they were extremely heavy. The pain was so bad to the point where I could barely walk. It was incredibly lonely as i was young and others around me led normal lives with their periods. Over the years, I learnt to manage enough to attend school/college/uni but it got to a point where I wouldn't stop bleeding for months on end. We trialled many pills and the injection over the years and settled on Nore with Micro with no gaps at all. These stopped my period but the pain and burning sensation was still around. After my first surgery I finally had a life but this was short lived and my symptoms started getting worse again. For a whole month I couldn't walk. My bowels weren't tolerating anything. The pain was only getting worse and I barely had a quality of life. I've now had my surgery with a Endo specialist and am hopeful about my recovery.

I was first diagnosed when I was 21 - I had been having heavy and painful periods since I first got them at 11 years old and was put on contraception to help but it didn't. I was constantly invalidated by doctors who told me period pain was normal. One doctor prescribed me with a high dose of ibuprofen for the pain. This ended up causing me to develop stomach ulcers as I was so nauseous from the pain I had been taking them on an empty stomach. At the hospital they did a laproscopy and I was diagnosed with stage 3 endometriosis. At 22 and at 27 I had surgery to burn off my lesions but it always comes back after 6 or so months pain free. Aged 29 I started to develop severe IBS symptoms. The doctors ignored me when I said it might be related to my endometriosis and sent me down multiple paths including blaming anxiety, diet and my weight. I'm currently being investigated for endo lesions on my bowels after 3 years of being mucked around. My quality of life has been completely ruined, I barely leave the house these days because when I'm not in pain the week before and during my period I'm experiencing issues with IBS-D. I used to be outgoing, loved to party, meeting people, travelling but I feel like I'm a shell of who I used to be. Doctors think the only way to help me is a full hysterectomy, but I'm not sure I want an entire organ removed, it is a tough decision. I have had issues with many people disregarding my condition, even people who care about me have suggested I'm overreacting. A therapist told me it would be my fault if my partner cheated on me because despite being in pain I still must apparently meet his "needs" in the bedroom. Living with endometriosis has been painful but manageable for the most part until recently, but I find the hardest thing is other people's opinions, and how the pain affects my relationship. Hopefully something can be done eventually to prevent other women from living like so many of us do.

Periods started at 14, remember being on holiday on the beach, and just suddenly flooding my swimming costume and not knowing what to do. Had pelvic pain for months before, but it was brushed off. Saw over 30 different GPs in 14 years while trying to get diagnosed. Pain journals ignored or rubbished, requests for ultrasounds and referrals to gynae rejected. Just went through every hormonal contraceptive available, various painkillers. Ended up in A&E several times a year. Blood tests have shown severe anaemia for 15 years but been told it was normal. Last year, junior doctor doing GP rotation sent me for an urgent ultrasound. He was worried. Ultrasound showed one endometrioma. NHS gynaecologist refused to treat me. She belittled me during the appointment, telling me it's painless and that it's impossible for me to fill the largest size mooncups in 4 minutes. Went private, and they did an MRI for pelvic mapping. Four endometriomas on right ovary, varying sizes. Right ovary and right side of uterus stuck to abdominal muscle wall. Indications of endometriosis lesions on bladder and bowel. Left ovary appeared clear on the MRI, in normal position, but some adhesions may form in future. Now discharged back to GP because private gynae can't do anything else to help. Was genuinely quicker to get Dignitas approval than an endo diagnosis. That took nine months. Endo was almost fifteen years. Lost jobs over endo. Have no friends and no life because I'm unwell from it all the time. 16 days out of 30 I'm bedbound. I hate it.

My periods were pretty painful from about the age of 14, normal painkillers didn't make a difference but I assumed I was just sensitive to pain. I flooded on several occasions at school, embarrassing when we had pale summer dresses, so I ended up changing my clothes choices. In my early twenties I finally found a doctor who was willing to investigate. She sent me for an ultrasound which showed nothing so I believed it was not endometriosis. I got married and found sex incredibly painful which did impact our relationship. When I was in my early 30s, we wanted to have children, and found I could not conceive. We were referred on for infertility, and the gynaecologist said it was almost certainly endometriosis, and the ultrasound would never have shown it. When she performed a laparoscopy to check and treat, it was clear I had medium to severe endometriosis. I conceived my first child almost immediately. When they were about 9 months old, the pain came back, but after child number 2, I was given a Mirena coil which stopped my periods and the pain. No more writhing on the floor fantasising about stabbing my stomach to stop the pain! No more hitting myself to distract fro it. I was not a wimp, I was suffering extreme pain - having gone through childbirth with minimal pain relief the endometriosis was up with that.

I have struggled with horribly painful periods since I was around 13-14 which have worsened over time. I’ve been to the doctor so many times over the years, tried so many painkillers and contraceptive pills which gave me bad side effects, and was still struggling with my symptoms. My periods were getting longer and recently had been lasting from 10-14 days which was worrying me as the pain was also getting more unbearable. An ultrasound showed I had a polyp in my uterus so I decided to undergo surgery to remove this and asked the doctor whether this was causing my pain - she told me it was more likely a condition such as endometriosis, and that she could combine the surgery to remove the polyp with a laparoscopy to determine whether my symptoms were related to endo. Finally, nearly 15 years after my symptoms first began, I was diagnosed with endometriosis which thankfully was removed, along with many polyps from my uterus. I’m a couple of weeks post surgery at the moment and hoping to see a big improvement in my quality of life; if you’re worried about your period symptoms and pain, please don’t doubt yourself and keep pressing for answers.