endometriosis in the bowel

ANYONE PLEASE HELP. i have had this illness now for ten years now i am really struggling to get on with my life i have had endometriosis on the bladder bowel and in the womb,had a hysterectomy but no kids.i have to go bck in to hospital soon to go to have a endoscopy to find the vissible endometriosis in the bowel i am very scared is there any other women suffering the same as me.please write.i need some support.

8 Replies

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  • Hi Kasy, I had a hysterectomy in 1995 when I was 29 years old. I had endo in both my bladder and bowel. I still have on and off probs with my bowel I have many bruising and Adhesions in my bowel and a twist in the sigmoid colon. There are certain things that I can't eat such as acidy fruits like pineapple. I do suffer from alot of diarrohea and what can't go down comes up!!!! and of course extreme pain in that area. Hope you are feeling good today, take care, Junex

  • Hi there. I have just read your post and wanted to write back to you straight away. I had to have a bowel resection a year and a half ago because of the endometriosis causing a stricture in my bowel. I'm out the other side now and would be happy to give you any support you need. I remember the paralysing fear of the whole process. Where on your bowel have they found it? X x

  • hello there its in the bowel not outside of it.i have to go for more scans.and they are doing the scope thing and im not quite sure how they are going to do it.but my only fear is the process of them telling you that you might have to have a collostomy.and when you had your hysterectomy did it do anything was there any changes in you.xx

  • Hello there, I'm seeing the surgeon tomorrow about possibly removing the endo obstruction in my bowel. How did you get on with the op? Recovery time? Problems after? Did they do an inspection for endo in others places whilst they were in there? So many questions, sorry! Vicky x

  • I have just been diagnosed with endo inside my bowel from a colonoscopy where they also took some biopsies. I now have an appt with the bowel surgeon tomorrow. My GP said that this is very rare. My GP referred me to the bowel surgeon to start of the process of sorting the problem and then to discuss the gyno element of it, to see if it's any where else. Because its rare I can get no information about it anywhere. I don't know whether I'm scared or not at the moment. Need more answers and have a plan of attack with the surgeon tomorrow. If anyone else out there has any advise, I'd really appreciate it too x

  • Hi there - I had bowel resection 18 months ago and like you, I couldnt find all that much information before the procedure. What plan are you forming for the way forward? My own op was successful in that I avoided a bag, but it definitely took me off my feet for a while. All the normal stuff linked to fairly major surgery. For me, the choice of the consultant, and the pain management team were critical. How did you get on with the surgeon yesterday? x

  • Hi there,

    I have also had a bowel resection - some years ago now - for endo that had gone through the bowel wall. Bowel endo affects around 10% of women with endo and may be treated in several ways - sometimes shaved off, sometimes a small disc of bowel is removed and sometimes a whole section is cut out and the bowel stapled back together (this is what I had done). I know it sounds scary but there are surgeons who are experienced in this technique (and some of them do it keyhole) and whilst there is a small risk of a temporary colostomy, it is something that they try and avoid if at all possible. That said, they have to explain the risk. Sorry I hope this doesn't sound too scary. What I meant to say is - for me, I found this to be an absolutely fantastic pain relief because bowel endo was horrible and I was quite incapacitated by it. Also, more recently I had endo on the ureter and found the surgery for this much worse because I had complications.

    I guess I just want to say - find out as much as you can, don't be afraid to ask as many questions as you need to and please come and ask us here for anything at all. Happy to give you any more detail you want.

    Good luck and please keep us posted.

    Lots of hugs

    Carol xxx

  • I've just had an emergency small bowel resection due to endo wrapping round the intestine. It died and was gangerinous when they did the operation. Four months on and I've had bouts if sickness, stomach pains and diarrhoea. Have been prescribed gastric acid reducing tablets and Buscopan. My GP is going to refer me back to the surgeon if it continues. He seems pretty clueless about possible after effects and now I'm worried it's leaking. 

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