Endo, Bowel & potential hysterectomy - Endometriosis UK

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Endo, Bowel & potential hysterectomy

Kaiser_susie profile image
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I had my laparoscopy yesterday and the consultant found a large hard mass which he thinks is Endo but it was so hard he couldn't cut through it and was worried about piercing the bowel. He also said he's found in my pouch of Douglas which is why he's convinced it's on the bowel.

I'm going to be referred to a colorectal surgeon and he's offered to be tempered to, to try and remove any other Endo they find. He then said I will ultimately need a hysterectomy. I'm 35 and don't want children. My logical brain is telling me if I'm going to have major open surgery for the bowel then why not take everything out then, if ultimately I will have to have it out anyway but I don't really know the risks of having it too early.

I appreciate I will need to have my ovaries to further reduce risk of Endo but then I dread that you could continue to have sexual desires up to 20 years after the ovaries arm removed, by which time I'll be 55. Doesn't seem very old to stop wanting sex, although I can't do much at the moment anyway.

Not really sure why I'm writing, just getting of my chest I suppose but if anyone has had similar experiences or facts about hysterectomy it would be great to hear from you. X

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Kaiser_susie
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Starry profile image
Starry

Hey. I have severe recto vaginal endo. I just went through the decision whether to have an oopherectomy. There are significant long term health risks after the procedure if you are under 45 so I would investigate it very very thoroughly as it is irreversible. ( Cancer, dementia, heart attacks etc)

My surgeon recommended a GNHR agonist trial first to have confidence that such surgery would alleviate the symptoms, as some women still experience pain after for other reasons like nerve pain, adhesions, inflammation that's become chronic.

Unfortunately the zoladex had serious mental side effects for me even with double the usual hrt. So I ruled out that option an have since agreed to go down the excision route.

If you search oopherectomy here you will find previous discussions here about that decision with links to the info I found.

Marcia71 profile image
Marcia71

Hard one to decide but if you go for hyster than make sure all endo is properly excised at the time else you will continue to have problems.

If you're not at a bsge centre then you need to be referred to one as then you have joint team operating.

Realistically hyster should not be offered as solution to endo as it isn't. It is for adenomyosis. So you want to question your surgeon a bit more.

Search for Lindles posts on here as she's very knowledgeable

Good luck.

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