Deciding on Surgery

[Aardvarks]

I am currently under specialists at UCLH for severe endometriosis and am contemplating surgical intervention. I am 27 years of age, soon to be 28, and my partner and I are planning on starting a family soon.

It has been suggested that we try and conceive soon as alongside endometriosis I have a very irregular cycle and an abnormal hormone profile. The CNS states that, if we do not conceive within 6 months, we should be referred to a fertility specialist.

The issue is that my endometriosis is managed by taking hormonal contraceptives. I have attempted to come off these before but after four month’s the pain returns and is unbearable. I don’t think this will help my ability to conceive.

I have the option of surgery to remove some of the endometriosis. However, the disease progression is severe and I am likely to need a stoma. The clinicians at UCLH are reluctant to perform the surgery as it is a big operation, there is no guarantee that the pain will go and I may be left with a permanent stoma due to the severity.

Honestly, I don’t know what to do. Although I know the chances of conception are not improved with surgery, I don’t feel like I can be off contraception long enough to conceive.

Also, this has got me thinking, will there ever be a right time to have the surgery? Is it that they want to hold off until I have passed child bearing age or is the intention to keep me on the pill indefinitely? Surely being on the pill for my whole life and deliberately stopping my periods can’t be healthy?

[theneverendostory]

I had my surgery for endo that was inside my bowel and between my bowel and vagina last year, it was needed due to my bowel not functioning normally due to the endo. I did end up with a temporary stoma which they didn't think I'd need, but ended up with due to where they did the joining and how much they removed. I have now had the reversal, but still recovering from that. It has been a bit of a rough ride, but after seeing the pictures that they took I realised how if I'd left it, it might have grown and had to have more bowel removed. Basically the longer you leave it the worse it could be (not meaning to scare you) but I wish I'd been diagnosed sooner and then I may have never needed the extensive surgery. I am also on the progesterone pill so can relate the concern for being on the pill for a long period of time. I am wondering why they are reluctant to perform the surgery when removing it is considered the best option for treatment? I didn't want surgery but it was what I was told needed to happen. Sorry you're having to go through this, it is a horrible disease.

[Aardvarks in reply to theneverendostory]

That is one of my main concerns, that it is beginning to effect the bowel… I figured if I have it removed sooner then it would be a smaller operation. They really seem to be pulling away from surgery and I’m not entirely sure why! I hope your recovery goes well.

[theneverendostory in reply to Aardvarks]

Have you asked them why? I would consider getting a second opinion if you don't feel happy with what they are saying. If it is affecting your bowel you definitely need to get it sorted. And after surgery it doesn't necessarily grow back and at least it will give you some time to try and conceive without having the endo tissue there causing issues.

[Aardvarks in reply to theneverendostory]

They just said that it’s a big operation and suggested I have it after starting a family… My MRI is being reviewed at MDT in a couple of weeks, and compared to previous scans, then I’ll be meeting with the surgeon to discuss. Im not entirely sure where to go for a second opinion as it’s the specialist centre 😖

[theneverendostory in reply to Aardvarks]

Ah okay, bit of a tricky situation then. Hopefully it's helpful what they say to you after they've seen the MRI scans.