Stage 4 Endo but minimal symptoms

[Amyrebecca246]

Hi, I'm writing this as I'm at home recovering from a laproscopic cystecomy (sorry if that's spelt wrong!) last week. The gynae consultant diagnosed me with stage 4 endometriosis after removing most of an 11cm cyst and then a smaller one on my other ovary. He said that I had a really bad case and can't understand why I did not have more issues! I had one cyst removed in late 2021 but apparently everything else was fine. Went back to my GP in 2022 as my periods were irregular and we were trying to conceive. My periods have never been long or heavy, only slight cramps, no painful sex or issues with bladder or bowel. I'm thankful in a way however it made what the doctor say come as more of a surprise. I just wondered if there's anyone else who has endometriosis but minimal symptoms?

[Starry1977]

hi yes. I’ve had same experience. I did have some symptoms but not severe and very intermittent every mth. I did have heavy periods and cramps but only a day or too. I did start getting done bowel pain and pain when deep sex but it all got better after they removed an endometrioma. At that point they also found stage 4 which is also severe. I think myself lucky I’m not in major pain. I do have lots of pulling and tugging with occasional sharp pain. Also constipation but I wouldn’t say severe.

[Snoopydraws23]

Yes! ☺️ Very similar experience. I have extensive stage 4 endometriosis, my uterus is tethered to my bowel but minimal symptoms. I have regular periods, and although day 1 of my cycle can be very painful - I can simply manage this with one dose of paracetamol and ibuprofen. Mine was only discovered during a laparoscopy to check the patency of my tubes as we were struggling to conceive naturally. They couldn’t even access my tubes due to how bad the endometriosis was. I ended up going through IVF to conceive but have had no surgery to remove the endometriosis due to being asymptomatic. X

[Kit_fergus]

Yes I’m the same. I found out I had endo at 36 (when trying to conceive) which came as shock as I hadn’t had more than a day or two of needing to take painkillers each month. I had a lap and a cyst removed and then did IVF which didn’t work but somehow managed to get pregnant naturally in the end. My endo was grade 2 pre baby and is now grade 4. I’m not really sure why it’s worse or what I should do about it. The doctors were also shocked that I’m not in more pain. I do feel it hanging over me now that’s I’ve had that diagnosis and worry about what’s to come with it. I’m trying to manage it with diet.

[Field20]

Yes!! I had a 10cm blood cyst removed from my ovary last year and they did a scout around while in there and found out I had pelvic endometriosis. Never had any pain, no heavy or irregular periods, absolutely no signs of symptoms at all! Only found out about the cyst because I wasn't getting pregnant, if we hadn't been trying (and failing) I would never have known. Mental.