Severe bowel endo: Hi I'm waiting to see my... - Endometriosis UK

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Severe bowel endo

Jodylou profile image
9 Replies

Hi I'm waiting to see my 2nd specialist after a diagnostic lap. Turns out I have an endometrial cyst and severe endo on the back of my uterus and my bowel. My next surgery will be for treatment and a colostomy has been discussed. Is this common or worse case scenario as I'm petrified that I'll have to have one. My bowel problems are getting a lot worse which isn't filling me with much hope x

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Jodylou
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9 Replies

Very uncommon. I had severe bowel endo/rectovaginal endo and although I was warned about the possibility of a colostomy, my surgeon was able to shave it off.

This gives you the bsge stats for 2015 - if you are having bowel surgery your hospital should be on this list.

bsge.org.uk/wp-content/uplo...

Jodylou profile image
Jodylou in reply to

That's interesting thank you x

Bebbeb89 profile image
Bebbeb89

I've recently been told I have superficial endometriosis on my bowel, not sure how bad or exactly where as I haven't seen my consultant yet, when I saw the gyno before hand she said if it's on the bowel there is always that chance during surgery it can be damaged and will be left with a stoma bag (bag on belly) so my advice for that is to just be prepared, I'm prepared for it. Hugs to you x

Jodylou profile image
Jodylou in reply to Bebbeb89

Thank you same to you. I had an MRI scan to see the extent of the damage to my bowel and I find out results next week x

DottyLou1 profile image
DottyLou1

I had a lap 31/05 and told severe stage 4 endo. They said my bowel is involved and is attached to my womb. My consultant advised Prostap injections and HRT for 8 months and not sure what the next steps after this will be. He bascially said high risk surgery and talked f colostomy risk and described surgery as a last resort. Have you had other treatment options discussed/ trialled them? x

Jodylou profile image
Jodylou in reply to DottyLou1

Not yet I see my consultant next Wednesday x

Heloo85 profile image
Heloo85

Its very much worse case scenario! They tell you that just incase. I got told but the risks are something like 5%. Very low! And if you do get one its very likely to be temporary! As in 6 months the re-operated to put your bowel back. Good luck.

Lulububs profile image
Lulububs

Hi

Sorry im so new to posting in sites and also endo, can i ask what have been ur symtoms? Did u have a idea it was on ur bowel? I know i got endo but i have no idea as to where yet as waiting ti see a gynae and have had no lap yet just a colonoscopy which showed nothing.

Jodylou profile image
Jodylou in reply to Lulububs

Hi I suffer for about 3 weeks of every month with stomach cramps.i have a period for about 4days where I have intense pain and incontinence and then I spot bleed on and off for another week or so.

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