Hi everyone, I could really do with some help today as I try to decide what to do next. I have endo and chronic pelvic pain.i am on prostap and have had 3 laps and 2 dermoid cysts removed.
My current gynae wants to do a hysterectomy.
I tried to see an endo specialist, paid privately and was supposed to be put onto his nhs surgical list for excision but he has gone off long term sick.
I also need pain management for chronic pelvic pain which seems to be unrelated to endo and I have been told it is neuropathic (nerve) pain. My current pain management specialist has only had 3 patients with chronic pelvic pain including me, so not experienced at all.
I am deciding whether to stick with the local hosp which doesn't have what I need really, or go to a specialist centre where they have what I need but the journey home post op will be horrible.
My current gynae says I don't need excision as there was only minimal endo which has already been "dealt with" as it was lasered last time. I have read enough to know this just isn't right, excision is the best way to deal with endo. When I said to him that it has been lasered so it will just come back he said that it will come back if I have excision too so I should just have the hysterectomy. I am beginning to doubt my own knowledge because i know excision is better.
I am also on prostap and was when my last lap was done so surely that would have shrunk it all anyway!
Totally confused and any advice appreciated please. I have read that my current gynae is a cancer specialist so he is bound to say hysterectomy! Some of my endo is on my womb so I may need the hysterectomy anyway.
I know that no one can make my mind up for me! But am I right in thinking that my current specialist is just wrong in what he is saying?
Thanks for reading, I can't believe that we have to research and decide these things ourselves because most Gynaes aren't trained in endo, you would think though that they would have some basic knowledge, reading any endo book will tell you excision is best! also can't believe there is no-one locally that I can see.
I am very lucky to have daughter who has just gone 6 and so I have to consider who will look after her if I am away having surgery and won't be able to have any op done until September now because of school hols!
Rant over, sorry it's such a long post and thanks for listening! Xx