Endometriosis surgery or not

[Amanda556]

I would appreciate some views on my catch 22. I been having really heavy period ,painful sex etc they said I could have surgery to see if I have endometriosis on ultra sound scans I didnt have any sign on scans but still could they say. I said no at that time due to possible complications op wise. This week I started getting pain passing urine and blood I don't have a uti so now the doctors saying this could be Endometriosis. So I have to have surgery to work this out and get answers. After surgery do you get to see from the surgery the pictures of the endometriosis or do they verbally just say? I have a few questions about surgery is it worth and has anyone had complications from it.

I just appreciate some views no idea what to do for the best .

[Kieraface]

depending on how advanced the endometriosis is there is the possibility of picking it up on a pelvic MRI if the radiologist is specialised in picking it up it definitely can be- but usually only stage 3+.

I had horrendous pain for years and had an MRI in July 2023 after an ultrasound just showed a bulky uterus and cysts. The MRI confirmed that I had endo and then they did surgery: the consultant verbally confirmed the endo after the surgery- where it was and how the excision went, no pictures though - but the quality of life after my surgery is far far better: I had it impacting on my bowel so couldn’t go to the bathroom without horrific pain, I had constant pain in hips and back and down my legs and in my stomach and sides. I now just have some little niggles where I assume my ovaries sit, but that could be as I’m only 3 weeks out of surgery and I’m still healing up.

The difference before and after surgery is already apparent. I would say that, from personal experience; the surgery is worth having as it has helped my pain significantly. However, everyone is different and my pain stopped me doing daily activities. You have to decide what is best for you. Good luck x

[KTF21]

I think you need to confirm it to know as if not you need to find out what makes you feel this way & if endo the stage etc.. treatment

I ended up going private due to nhs waits , age , fertility & was diagnosed by MRI alone showed stage 4 deep infiltrating involving a few areas I have decided against surgery for now anyway , but they will continue to monitor with MRIs to ensure no bowel obstruction

Without an diagnosis you don’t know your options good luck x

[Amanda556 in reply to KTF21]

I come to your view on diagnosis even though I don't like surgery thought . They done mri and ultra sound scans surgery is the only true way to rule in or out as the case maybe .

[Marcia71]

surgery is no longer considered the gold standard of diagnosis but the mri and transvaginal ultrasound must be done and read by a specialist in detecting endo on scans. That said scans can still be clear and the surgery should still be offered to see if you do have endo. Superficial endo - that on surface of organs is the most often not seen on scans.

If you decide on surgery make sure it is with Gynae with at least a special interest in endo. A general Gynae is much more likely to miss it.

[Charlie0112]

I saw the pictures after my laparoscopy (it was private though so the surgeon took a bit more time to explain everything to me). Not sure it helped though as there’s no way I would have know what I was looking at without him pointing it out!

[Dratini]

I was diagnosed through a CT scan as they found endometriosis cysts. But I’m still going to have the laparoscopy to see how bad it is, the thing with endo is that it spreads and I wish I could have had my laparoscopy earlier on to get on top of it sooner