Unsure on decision to have a hysterectomy

[Beejc]

Hi everyone. I’m feeling really confused and would very much appreciate some advice.

I was diagnosed with Endometriosis last year whilst undergoing a lap to remove my tubes and ovaries. This was for suspected ovarian cancer which thankfully it wasn’t. My Endo was diagnosed at that time

From this I have gone into surgical menopause but continue to have Endo symptoms such as bowel issues (stuck to things!) and really bad flare ups with extensive swelling.

I was recently referred back to Gynae and the consultant has recommended that I have a hysterectomy plus ablation of any Endo found at the same time.

My dilemma is that the surgeon seems to think this will relieve my Endo symptoms and be of use. However as most of my symptoms seem to be bowel related due to adhesions I’m unsure how effective this would be. As I no longer have periods, this side of my Endo symptoms is no longer a problem.

Sorry for the long post. I would really appreciate any advice.

Bee

[Christin_a]

Hello

Don't go for it. 1st a hysterectomy is not a cure for endo. By definition endo is outside of the womb so a hysterectomy won't get rid of it. 2nd as your gynea is taking about ablation not excision your not being seen by a specialist. The difference between the two in simple terms, think of ablation as cutting a weeds head off and excision as digging the roots out.

If you have endo on your bowels you HAVE to be seen by a specialist in the UK these are BSGE centres. There are private places as well but bsge centres (NHS) have specialist gynecologists, nurses, colorectal surgeons (for bowel involvement), pain centres etc.

The reason you need to be seen by these centres as bowels need a bowel surgeon but that surgeon needs the knowledge of endo as well as a the gynecologist being there to clear all other endo.

I know there's alot of information to take in if you have any questions please let me know. I've read alot about endo as it was suspected for around 10years before I finally got a diagnosis.

Christina

[Beejc in reply to Christin_a]

Thank you so much for taking the time to reply. My gynae is very much pushing for me to have a hysterectomy. I have major reservations so I think that I’m almost certainly not going to go ahead with it. I’ve also read lots that explain about the difference between ablation/excision as you mention, so that part of my consultation with him made me worry almost straight away.! It’s so difficult. Bee

[Maxi72]

Hi there

Sorry to hear what you’re going through. You say that you’re now in surgical menopause. I am in chemical menopause ( by Prostap injections) and my specialist nurse told me that this reflects how you would feel after a hysterectomy. In my case, there is endo that is surgically inaccessible and my improvement with the injections is limited. Hysterectomy is therefore not being discussed. So based on that, I think that you’re right to assume your bowel symptoms will need bowel surgery to improve- assuming that surgery is possible. I would definitely question this before something as big as a hysterectomy. Take care.