Search endometriosis experiences

I started my periods at age 10 which were heavy, painful & crippling. By age 12 I was put on the contraceptive pill without any investigation or concern why I was in so much pain. Over my teen years I continued to struggle with my periods, menstrual health, bowel & mental health. Missing so much school then having to leave half way through year 11 due to severe depression & sat my GCSEs from home. At 17 my symptoms were getting increasingly worse from painful, constant periods which lasted weeks on end, erratic & painful bowel movements & stomach issues, pain during/after sex, bloating, nausea, abdominal pain, pelvic pain, lower back pain, fatigue & insomnia. So I went to my doctors to spend the next 5-6 years being dismissed, fobbed off & gaslighted with being told I just had IBS, gluten intolerances, stress, part of being a woman & normal to have all these issues. I eventually had a GP listen to me after so many trips to the doctors & A&E to the point I countless jobs due to being so unwell. She referred me to my endometriosis specialist & in 2016 at 23 I was diagnosed on my first laparoscopy with endometriosis found on my left ovary & bowel. Since, I have also been diagnosed with adenomyosis, fibromylagia & had to have another four surgeries where endometriosis has been found, grown back & spread to not only my left ovary & bowel but also my bladder & womb. Endometriosis has fused my organs together resulting in my almost losing my left ovary, bowel & fallopian tubes leaving me with permanent organ damage. Not only is the condition itself aggressive & progressive, but the domino effect it creates with issues such as adhesions. On my last surgery in February this year, I had extensive adhesions from under my left rib all the way down to my pelvis. With each surgery the time frame between them has got slimmer & the relief is becoming non existent. My last 2 surgeries I have had to have privately due to the spread & regrowth of the condition, being proactive & having to pre-empt knowing my body means I have nearly missed losing organs or even further irreversible damage then if I had waited the long wait times for surgery. Living with the conditions has impacted all aspects from life, from my mobility, my fertility, my career, my mental & more. My dream of becoming a Mum is something that may not happen now due to fertility issues but also being so unwell that I don’t feel it is realistic to be able to fulfil that goal. I had to give up my job last year & heavily rely on my husband as my carer. I have tried everything to manage & live as best as I can with these conditions from chemical menopause, pain medications, treatments, procedures, holistic therapies & more.

I've had pain during sex, irregular periods and lots of pain during my period for most of my adult life. I have been fobbed off time and time again until last year I was finally listened to and referred to the gynaecologist. They suggested endometriosis but because of my BMI wouldn't refer me for a laparoscopy, instead gave me the mini pill. Was told I could come back within 6 months if it doesn't help my symptoms. After about 4 months and constant bleeding from the mini pill I decided to go back, only to be told I was misinformed and I only had a 3 month window to come back. I now have to be referred again and have been told it is now a 2 year waiting list. I have awful pain every month that is rather debilitating. Absolute joke.

I was lucky to be diagnosed at 19, I’d been having symptoms since starting my periods at 15. They were extremely painful, heavy and would be all over the place, I was advised different contraceptives for years and none of them helped my symptoms. I finally got a laparoscopy when I was 19 and was diagnosed with endo all over my womb, bowel, cervix and other areas. I was told to have a child to ‘fix’ my issues. Again very lucky to get pregnant at 24, had my daughter and now at 30 my symptoms are worse than ever. The coil used to stop my periods but don’t anymore, I bleed for weeks at a time and am in constant pain, extremely tired, have migraines daily. It’s hard living with all of this.

I'm at the very beginning of my endometriosis journey and am yet to be diagnosed. I've suffered with painful, heavy, long periods since I started at age 12 (I'm now 29!) I've managed the pain with ibuprofen and paracetamol (which has taken a toll on my stomach and bowels over the years) and GPs and nurses have only advised changes in contraception (like many other women, I've tried so many types now). On average, my periods last 10 days (but can be up to 16) and I experience pain and bleeding between periods every month. This costs a lot of money in period products, my anxiety levels are sky high, it's affecting my relationship because sex is so painful, and it's massively damaging my mental health. I have been to see a GP recently, and am now on a waiting list to see a gynaecologist. Thankfully I have a great support network around me, and my partner is amazing, but for me as an individual, I feel that my pain has been ignored and brushed aside for so long.

I was ignored by the Drs that I saw. They kept telling me I had IBS but I kept pushing for further tests. 4 years later I got a laparoscopy and I had it around my deep pockets in wrapped around my bowl, my pelvis, lower spine, and on my womb. Living with the symptoms before I got the coil were awful. Constant diarrhoea and stomach cramps which gave me no warning, life was taken away, I could barely leave the house, if I did there had to be a toilet close by. Then I got the marina coil which changed the symptoms just got a serve pulling pain. This was easier to live with, but no painkillers helped, I tried stronger pain killers like codine & naproxen, it was pointless, didn’t do anything. The pain was so severe. Now I’ve finally had a laparoscopy and the symptoms have eased but still getting the pulling pain.

after having my children in my 20's my periods became increasingly heavier and painful. i can remember one instance when my toddler found me on the bedroom floor in pain. thankfully my doctors were amazing and I was referred and ended up having a laparoscopy where it was found i had severe endometriosis and it was also stuck on my bowel wall. whilst under I had the mirena coil fitted (more on that later) slight complication after procedure in that my bladder stopped working so I had to have a catheter for a few days while it recovered so ended up staying rather than a day patient. The mirena coil has been my life saver, i have continued to have them fitted and I have not had one period since and no pain. For me it is slightly painful to have fitted/taken out as my cervix is tilted and I havent found a practitioner yet that has managed it on first attempt, in saying this it hasnt put me off as the benefits outway this. I am now using the coil as part of my HRT treatment

I was diagnosed through a laparoscopic cystectomy and all I can say is nobody deserves to experience the endometriosis pain

Took me 20 years to be taken seriously with my symptoms and it was only when I had a UTI for 3 months and I said my mum had a hysterectomy from endometriosis that I finally got referred. This was in 2016. The care from the consultant was terrible, claimed it was only IBS, finally had a laparoscopy in 2017 and was diagnosed with endo but discharged with no follow up or after care. Have been put on around 20 pills and the coil since I was 16, I stopped taking hormones when I was 39. Finally with an actual endo clinic where they care and are looking after me properly, have diagnosed fibroids which they found in 2017 but didn’t tell me about. They’re now trying to save my uterus from both endo and fibroids. It’s been shocking to live with!

I have not been diagnosed