Colorectal surgeon

[jull]

I have severe endometriosis and am under a specialist team, wondering can the bowel surgeon take charge of the whole process? He's really pushing me to have a hysterectomy saying he can't reverse my stoma without removing everything basically. I'm 32 and don't want to go through all that anytime soon despite the horrific pain i get monthly.

[Koryu]

So, I had a partial bowl resection because of endo. The surgery was done as a combined effort as endo had to be removed alongside the bowel surgery. Always work with your endo specialist, I'd say.

Have you got a stoma now? I'd get another opinion quite frankly. I was never told that they'd need a hysterectomy to fix things, should I need a stoma (I got lucky and they didn't use one for me in the end). It seems odd...would they tell someone who has nothing wrong with their uterus to lose it for this? Maybe you have unique circumstances or maybe he is weird, I'd ask another specialist. Good luck and everything crossed!

[Marleybobs14]

I am currently 7 weeks post hysterectomy due to adenomyosis and severe endometriosis. Both ovaries left intact after successful removal of ovarian cysts. My surgeon ‘recommended’ a hysterectomy to resolve the painful heavy periods, fibroids and adenomyosis but did not push me to have it. Has your surgeon given you reasons why they feel it’s so important for you to have a hysterectomy? Do you already have a stoma? I had my bowel wall shaved during surgery to remove endometriosis and I was prepped for a stoma. Thankfully I did not need one. I was advised the chances are only 1% of having to need a stoma - so if you haven’t already got one then there is very low chance of needing one. It sounds like you need to speak to your surgeon more in depth about the reasons for your surgery. I hope this helps. Good luck. xx

[jull]

Hi, thankyou both for your replies, yes i've had my "temporary" stoma for over 3 years now, my endo is really bad affecting my bowel and left ureter. I have a stent there that needs replacing every 6 months.

I think they want me to have a hysterectomy because apparently my next big operation will be all they can do for me, so if i don't have the hysterectomy then, i'll never have it done. Maybe because of scar tissue or that i've already had open surgery on my abdomen.

I seen him last week and he was quite adamant that i should have it done saying they can't remove all the endo without me having a hysterectomy. He's sending me for a sigmoidoscopy not knowing i had one 2 years ago (he had to check on his computer).

[Marleybobs14]

Hi Jull, I’m so sorry to hear you’ve gone through so much already, it sounds like you’ve really gone through the mill with endometriosis for some time now. Although 32 is fairly young to have a hysterectomy - I guess your gynaecologist hasn’t come to that recommendation lightly. I hope you can get enough information to make the right decision for you. All the best. xx

[Hidden]

Hi jull, this doesn't sit right with me at all, just my personal feeling, obviously I don't know all the details but struggling to get my head round how your colorectal surgeon can say this? I don't understand how they can say they can't excise the endo without removing the uterus, when the endo is outside the uterus?? What does your gynaecologist say? You say you are under a specialist team, is that at a bsge centre? I am under a bsge centre and the way I see it is the gynaecologist is my lead consultant with input from the bowel surgeon as needed, certainly not the bowel surgeon leading the process. Ultimately you have to be happy with your treatment plan and you make the decisions so I hope you don't feel 'bullied' into a hysterectomy for the sake of having your stoma reversed. I had a temp stoma last year after bowel resection for full thickness endo, but was successfully reversed after 5 months. I think I would definitely want to seek a second opinion, although I appreciate this could be difficult if you are already under a specialist centre, who are supposedly the experts 😏

[jull in reply to Hidden]

Hi, yes it is a bsge centre. My endo consultant would prefer if i had a hysterectomy as my endo is really bad, but he doesn't seem as adamant as the bowel surgeon. That's why i think he seems to be taking control, my endo specialist has just moved to Dubai anyway so i'll be needing a new consultant who can carry out complex endo surgery, think i'll be waiting a while longer yet!