Search endometriosis experiences

Share and compare your endometriosis experience with other women. Explore similar symptoms & effective treatment stories

Filter experiences

Community experiences

Endometriosis experience
Symptoms <6mos
25 years old
🇬🇧 United Kingdom
  •  2 days ago

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

Read full review

0 helpful

0 comments

Endometriosis experience
Symptoms 10+yrs
42 years old
🇬🇧 United Kingdom
  •  5 days ago

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!

0 helpful

0 comments

Endometriosis experience
Symptoms <6mos
22 years old
🇬🇧 United Kingdom
  •  2 weeks ago

I have not been diagnosed

0 helpful

0 comments

Endometriosis experience
Symptoms 8-10yrs
29 years old
🇬🇧 United Kingdom
  •  3 weeks ago

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!

0 helpful

0 comments

Endometriosis experience
Symptoms 8-10yrs
24 years old
🇺🇸 United States
  •  1 month ago

In hindsight, i realize my period was never normal- i struggled with severely heavy periods as a young teen. Finally 10 years later, my heavy periods returned along with severe pelvic pain. Many appointments later, my gyno found ovarian cysts that should “go away.” They continued to grow until I begged for a surgery after becoming so sick that I could not longer function. they ended up discovering stage 3 endo. One month post laparoscopy and there’s still pain but i know it’s “technically not as bad” as before

4 helpful

0 comments

Endometriosis experience
Symptoms 10+yrs
28 years old
🇯🇵 Japan
  •  1 month ago

It took me 13 years to get diagnosed. After countless doctors visits, multiple types of birth control, excruciating physical therapy, ultrasounds, tranexamic acid, hormonal pills, and against the advice of most of my doctor's, I finally got excision diagnostic surgery and a tubal ligation.

0 helpful

0 comments

Endometriosis experience
Symptoms 10+yrs
28 years old
🇬🇧 United Kingdom
  •  1 month ago

After 11 years of knowing that something was wrong, I was finally diagnosed with endometriosis. It was not an easy journey, it involved medical gaslighting, being told my pain was in my head, feeling guilt and shame even mentioning the pain I was in. The moment I was diagnosed I felt a sense of relief that I wasn’t crazy, and then I had the crushing sense of knowing that I had endometriosis. It’s a bitter sweet feeling, but at least I finally had answers. Getting a diagnosis was only possible as my parents were willing to pay for me to go privately due to the impact on my physical and mental health, I will forever be grateful to them for their help. I had to advocate for myself so many times, and asked specifically for excision after lots of reading. Whilst under I had a coil fitted too, in the hope that it would help with my symptoms. Since my surgery my quality of life drastically improved, I was able to go back to the gym and have a life again. Although slowly (1.5 years later) some of my more painful symptoms are starting to return. Although my coil does help, I still have a period every month so a lot of my symptoms continue to be cyclical. My luteal phase is hell, so much pain, I feel like the shell of the person I was. However I do have 1 good week a month which isn’t ideal but is better than nothing! I realise the burden I carry in day to day life, the consideration that has to go into going into the office, or going out for a meal - suddenly I’m packing pain meds, I’m thinking ahead to food options, I’m asking for decaf coffee and tea, I’m wearing bloat friendly clothing, maybe period knickers for just in case. However, ive learnt to be kind to myself, I’ve learnt to have empathy and understanding with my body which is a gift I’ve never given myself before. I’m super fortunate that my husband is the most amazing man and supports me through it all wholeheartedly, I know it’s hard on him, but he always has my back and is ready to pick up the slack when I’m struggling. It’s a constant struggle to not get weighed down by chronic illness, or overwhelmed by it all. No one understands unless they are going through it too, so it can feel a very lonely place.

0 helpful

0 comments

Endometriosis experience
Symptoms 10+yrs
29 years old
🇬🇧 United Kingdom
  •  1 month ago

Had horrible periods from starting at aged 10. Doctor put me on the combined pill from age 14 which helped a lot but I still had unexplained pain during sex and bowel symptoms. Then came off the pill at 24 and all my symptoms came back worse. Initially treated as IBS, then PID. Started TTC at 25 and needed a laparoscopy with endometriosis removal at 26. Got pregnant at 27 and now I have a beautiful baby boy!

1 helpful

0 comments

Endometriosis experience
Symptoms 1-3yrs
32 years old
🇬🇧 United Kingdom
  •  21st Jan 24

I first went to see my GP about 8 years ago for awful digestive issues. It took four years for a diagnosis of “probable IBS” I was on the contraceptive pill for about 15 years before I made the decision during the Covid lockdown to come off it (combined) - until then I had never experienced any cramps, heavy periods or suffered from acne. These started almost immediately after coming off the pill and they were extreme. Accompanied by severe anxiety, very irregular periods and dreadful mental health. Now a few years on my symptoms are still the following; heavy flow, painful cramps, severe lower back pain, digestive issues, acne, cramping, ovulation pain. During an average period, on my heaviest day I pass clots hourly and I soak through 3-4 pairs of “heavy flow” period pants. However, My periods last for 7 days and are now fairly regular. I have gone back to the GP 3 times in the last 18 months. About 12 months ago I finally had a doctor who would listen and I was referred to OBGYN - I had an internal womb scan and nothing showed. My gynaecologist put me back on a progesterone only pill whilst I focussed on planning my wedding but now I am back off this and trying to conceive - with no success in the last three months. My next steps are to go back to my gynaecologist who has said they would be happy to do a laparoscopy if I want this. Also want to mention that my mum had endo, was ignored for 25 years - went in for a minor back operation and her endo was so bad (stage 4) it had attached itself to her major organs and she had to have a hysterectomy. My symptoms are sometimes manageable but at worst they are completely debilitating. On the really bad days I am unable to get out of bed.

1 helpful

0 comments

Endometriosis experience
Symptoms 10+yrs
40 years old
🇬🇧 United Kingdom
  •  21st Jan 24

I’ve been struggling for almost 30 years! Diagnosed with years ago after ending up in A&E with severe tubo ovarian abscesses, one surgery at home in the UK and things were too severe to do anything, another more major surgery at an approved endo centre and once again more surgery to come as things were too fused together! Stage 4 deep infiltrating diagnosis, possible adenomyosis and failed IVF attempt sadly

1 helpful

0 comments

The Lowdown

Women's health, reviewed.

Get the best women’s health info in your inbox

You are signing up to receive The Lowdown's latest findings and news in women's health. Your data will be used in accordance with our Privacy & Cookie policy

Built by doctors and experts

Our tools are made by medical professionals for your peace of mind

Pharmacy services provided by Phlo Technologies Ltd. GPhC reg number: 9011171

When you click on some links on this site, we may get a small affiliate commission