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Endometriosis experience
Symptoms 1-3yrs
32 years old
🇬🇧 United Kingdom
  •  11th Mar 24

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.

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Endometriosis experience
Symptoms 10+yrs
31 years old
🇬🇧 United Kingdom
  •  8th Mar 24

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.

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Endometriosis experience
Unknown
45 years old
🇮🇹 Italy
  •  4th Mar 24

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Endometriosis experience
Symptoms 10+yrs
29 years old
🇬🇧 United Kingdom
  •  3rd Mar 24

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.

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Endometriosis experience
Symptoms 3-5yrs
31 years old
🇬🇧 United Kingdom
  •  1st Mar 24

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.

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Endometriosis experience
Symptoms 10+yrs
50 years old
🇬🇧 United Kingdom
  •  23rd Feb 24

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

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Endometriosis experience
Symptoms <6mos
25 years old
🇬🇧 United Kingdom
  •  20th Feb 24

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

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Endometriosis experience
Symptoms 10+yrs
42 years old
🇬🇧 United Kingdom
  •  17th Feb 24

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!

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Endometriosis experience
Symptoms <6mos
22 years old
🇬🇧 United Kingdom
  •  10th Feb 24

I have not been diagnosed

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Endometriosis experience
Symptoms 8-10yrs
29 years old
🇬🇧 United Kingdom
  •  7th Feb 24

I had really terrible periods my whole life and only when I got private healthcare was I referred for any tests!! Was always told that it was just normal to have heavy painful period where I am taking time off school and the solution was just to put me on the pill aged 14 and see what happens!

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