Looking for advice about endo and surgery

[Lizlemo]

Sorry this is long! I was diagnosed with stage 4 endo in June after having what I was told was dermoid ovarian cyst removed which turned out to be an endometrioma. While taking that away the surgeon found endo on bladder and bowel but he didn’t touch it.

The cyst was found because I had slightly raised CA125, and the entire situation arose because I developed bladder urgency.

I’ve had cystoscopy which didn’t show any problems inside bladder.

My gynae consultant referred me to the top endo man in my area, who then recommended I see a bowel consultant - as a result I saw him and had a flexible sigmoidoscopy, which showed no endo inside bowel. He very much seemed to think I should leave it alone as I have minimal bowel symptoms (no blood in poo, occasionally get pain inside). He also explained the risks of bowel excision which were quite serious.

Was then recommended to see the bladder man again - he said that was no way of knowing if the endo on bladder was causing the urgency, and again didn’t seem too enthusiastic about removal.

I now have organised a final consultation with the top endo consultant again, in our first meeting he seemed very much like surgery was only option but given the bowel and bladder consultants both seemed much less certain, and all the risks of surgery, I would like to try more conservative treatment first, such as the pill (was on it for years in my 20s and 30s with no symptoms of endo) and stronger painkillers or something like amitryptline.

I’m 46 and definitely peri menopausal as periods quite haywire (that could be due to ovary removal?)

Am I being naive to want to try and avoid surgery? Is it inevitable?

I was controlling my bladder with tolterodine quite successfully until 10 days ago when it’s all pretty much come back and it’s really thrown me. Now I’m very much undecided what to do. This top endo man could put me on his nhs list and my local hospital is an accredited endometriosis centre.

Thanks for reading if you got through that lot!!

[Lizlemo]

Yes, he’s the top man on the team, and would have the other two consultants to do their bits on bowel and bladder.

[wanwood]

The risks of surgery on the bladder only are much lower than the risks of surgery on the bowel, so that may be something to consider. You could ask about the complication rate of their particular centre, and recovery time as well.

However, yes, there is the pill, but you could also ask about other hormonal management like Prosap or Zoladex, which are hormone blockers that would put you into a temporary menopause. You could see if it gives you any relief before going down the surgical route.

[Lizlemo in reply to wanwood]

Thanks so much for your kind advice, I’ve noted the points in my massive list of questions for the consultation tomorrow!

[wanwood in reply to Lizlemo]

Thanks, very best wishes for your consultation! I typed "Prostap" wrong by the way, it has a T in it. x