Small bowel endometriosis : Hi, I just... - Endometriosis UK

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Small bowel endometriosis

MyStar86 profile image
4 Replies

Hi,

I just wondered how is small bowel endo diagnosed? I had a laparoscopy where multiple endo was found some treated and some left for another specialist however I have massive gastric issues with pain and liquid stools daily. It’s always bad my body doesn’t digest anything every single day I go through the same suffering. The colon was fine but endo left near the rectum however I don’t see how they could see the small bowel properly during lap as it’s miles long and loads of loops. Would you need a small bowel mri to see this? Any advice would help because my first surgery has left me no better off in epic pain With the same symptoms I know endo is left waiting to see the next specialist but could I have endo on the small bowel too?

Thank you :)

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MyStar86
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EndoJaz profile image
EndoJaz

It has been suggested that I have a colonoscopy again for right sided ongoing pain but I don’t think endo can be diagnosed with a colonoscopy so not holding out much hope. Had endo removed last Sept and a hysterectomy 4 yrs ago but the constipation and diarrhoea and pain gets me down, so worn out with it all. Do u have blood in your stools too? Xx

MyStar86 profile image
MyStar86 in reply to EndoJaz

Yeah I get blood in stool and sometimes just pass mucus with blood in it. It’s horrible I have Diarrhea every day but it’s like it gets trapped some I’m rolling around in agony. It seems to go all morning then leave me doubled up during the later day and evening till I’m burning up in the morning wnd rushing to the loo. I want them to do a small bowel mri as I know they can’t see the small bowel on the laparoscopy and given I have the deep endo on my rectum I want the small bowel to be looked at pre surgery save me having yet another surgery!!! How did you find the hysterectomy? I want to have one because I also have pmdd so very sensitive to progesterone and can’t have any of the endo treatments, I hated the Zoladex but tried just taking oestrogen which suited me much better however I can’t do that long term unless I have full hysterectomy so I want it for both endo and pmdd. Let me know your experience with the hysterectomy as I see my specialist on the 6th to discuss rectum surgery but I want to ask about doing hysterectomy at the same time…..would you recommend? Thank you xx

EndoJaz profile image
EndoJaz in reply to MyStar86

I still have my ovaries, one has a mass on which they are monitoring, I had the hysterectomy due to fibroids and endo on pouch of Douglas and ligaments, it was so good to stop the flooding as it was constant come the end. The recovery was much better than I thought it would be, the last excision was a longer recovery and that was only peritoneal endo. As long as you give yourself a full 6 weeks to recover where u don’t do much at all which was possible for me as kids are grown up. Couldn’t imagine how hard it would be with kids. I have been advised to have grnh jabs but I can’t deal with anymore side effects at the mo. Xx

MyStar86 profile image
MyStar86

I have it on the pouch of Douglas and ligaments and it’s was too deep and nasty for my gynaecologist to treat that’s why I’ve been referred on. How was that surgery? I was hoping to combine it with the hysterectomy as I can’t cope with the periods it destroys me this one has just kept going for weeks and I’m doubled up. Do you know if you can get endo on the small bowel as they can’t see that via laparoscopy? I’m so confused as I’ve spent years with gastro doctors and never even thought about endo j told them the hormones made it worse but no one seemed bothered wnd I never put it together till the periods started as I rarely even used to bleed now it’s making up for years of not bothering me :( I have such bad back pain I can hardly even get in the car as a passenger and struggle trying to just sit on the sofa in the house as it feels like my diagram is crushing all my organs and my stomach is just constantly swelling throughout the day. I’m a mess with hormones all over the place I feel like I’m going crazy just worrying about seeing the new doc on the 6th as I just want someone to help me as I need a life back. Thank you for the advice on the hysterectomy and sorry you are still suffering I thought the hysterectomy would stop that…..I’m guessing keeping the ovaries is why you can still have the endo? I hated Zoladex the bone pain is horrific I couldn’t stick it out I wanted it removed but they said I had to wait till it dissolved but now I’m in such a mess in wondering if it did help as I wasn’t in this state. Just having a very bad day and I’m scared not knowing what to do and feel like I’m doing something wrong making it worse as I don’t understand why it’s all gone so bad agaib…..I know the endo is still left to be treated and I am bleeding so it’s messed up on it’s own but I just feel so confused and upset. Thank you for helping and listening to me as I feel lost xx

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