Histology came back clear - what next?

[gardentink]

Hi all

First time posting here! Sorry for the following ramble but trying to give a bit of history first and hopefully someone can give advice! I've had pain for years and a couple of years ago I went to the doctor regarding these pain attacks I'd get during bowel movements. There was no obvious cause of them (I did a food and health diary for over a year beforehand, and found no pattern) and they'd come along suddenly (no trigger). Each attack lasted at least 20 mins, with intense pain in my lower back and lower stomach/pelvis (sometimes feeling incredibly sick as well). After going through all of my symptoms, the GP suggested it could be endo and I had more tests and was put on the waiting list for a specialist. The specialist then said it could be endo and referred me for surgery to check.

After surgery my discharge notes said that I'd had excision of left uterosacral endometriosis (which made sense of where my pain was). However, after waiting weeks for the results, I had a letter from the surgeon simply saying the histology had come back clear and there was no endometriosis, and to talk to my GP about IBS. I'm so worn out from it tbh and don't know what to do next. Has anyone else had a similar result?

I'm sure it's not IBS, the symptoms don't match as much as they do to endo, and both GPs I saw dismissed IBS (one of whom is a Gastroenterologist) but I just don't know where to go from here.

My surgery was quite quick, and they'd been running late, so a part of me is worried that they might have seen the bit they thought was endo, excised it and then not bothered looking for more.

[gardentink]

Meant to add : I'm on the mini pill (desogestrel), and have been on the mini pill since about 2010. I don't get any bleeding from it, and when I tried coming off a few years back, I lasted a couple of months before the pain was too bad and I went back on.

[AllthatGlitters]

Hello I was told for years and years that I had IBS. It was only when I moved away and went to a different GP that I was diagnosed with adenomyosis via MRI and endometriosis via laparoscopy.

I would suggest asking for an MRI, it was my gastroenterologist who sent me for the MRI 😀as he said your symptoms are not IBS and we need to check that’s going on x

[gardentink in reply to AllthatGlitters]

Thank you! I’ll look up adenomyosis and see what the symptoms are. I’m just so worn down after years of going through it with different doctors, the idea of starting it all again is draining. All whilst being made to feel like I’m making it up. X

[Ruby1221]

I was told I had IBS for 25 years!

Turned out it was adenomyosis ( the evil twin of endometriosis…) it’s only seen on mri or post hysterectomy

[gardentink in reply to Ruby1221]

oh gosh, that must have been so frustrating! I’ve looked up adenomyosis and it looks possible, so I’ll try and suggest that to the GP when I contact them!