Endo on bowel - any experience/advice on ... - Endometriosis UK

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Endo on bowel - any experience/advice on surgery options?

Sarah_Meriel profile image
7 Replies

Hi there,

I'm convinced I have endo on my bowel, or somewhere near. All the classic symptoms - bleeding when passing stools when on period, sometimes can't even go as it feels like something's blocking it. Nauseating pain when I do eventually manage to go too! Pain during/after sex. Similar symptoms to IBS.

I've been offered another laparoscopy, but wondering if I should push for a different op, or a colonoscopy?

Thanks in advance!

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Sarah_Meriel
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7 Replies
lillied profile image
lillied

hiya,

My endo was strangling my bowel and this was discovered via laparoscopy. Colonoscopies only look inside the tubes so they won't know what's going on around it (trust me I had 6 before I was finally referred to a lap!).

Stick with it and make sure they check your bowels as well. If you're in the South of the UK I can recommend the Surrey partnership. It has a great set of endo and bowel specialist surgeons. You can find them on the preferred NHS endo list. I don't think we're allowed to name specific surgeons or hospitals on this site.

For excision, you should be seeing two surgeons but you can cross that bridge when you come to it.

all the best,

xxx

Sarah_Meriel profile image
Sarah_Meriel in reply tolillied

Hi, thank for this it's interesting to hear. I've read so much on the internet about endo infiltrating the bowel walls and not being discovered via laparoscopy. I've already had one lap about a year and a half ago - they found mild-moderate endo, but not on my bowel. So we will see!

feisty-girl profile image
feisty-girl

I was diagnosed with endometriosis on and around many times only way they found it each time was through lap!! I have been under the Surrey partnership for 16 years and had 14 for endo they have a specialist team set up by my surgeon at the time and specialist nurses which weren't around when I was diagnosed. So if you don't have a specialist I would say get referred their.

Write everything down !!pain level ,triggers ,periods,bowel pain,sex pain ,loose stools ECT food triggers!!blood clots if any.ect .all the time keep fighting hun 😘you now your symptoms never give up hope !!Can always ask me anything if help xx

Sarah_Meriel profile image
Sarah_Meriel in reply tofeisty-girl

Thanks! Yeah this is with a specialist centre now. They did offer the zoladex injections as an option instead of a lap. But I find hormonal therapies a real drain and I'm scared of being put on the menopause, even temporarily. It doesn't feel right.

feisty-girl profile image
feisty-girl in reply toSarah_Meriel

Really hard it's up to you but if you are going to have the injections you might just mask the symptoms. But obviously that's entirely your choice I'm only talking from personal exsperience !!Have you had a laproscopy?

Sarah_Meriel profile image
Sarah_Meriel in reply tofeisty-girl

Yes had my first diagnostic lap over a year ago - nothing found on bowel, only pouch of douglas, bladder, and ovary which was stuck, - but my bowel related symptoms have got worse over the past year.

feisty-girl profile image
feisty-girl in reply toSarah_Meriel

If that's the case !!and your symptoms are getting worse I would have a laproscopy. At one stage my bowel were connected to my womb and ovary outside right wall only way they saw it was a laproscopy. Yours could well be on bowel or conected else where,if you do bleed out your bottom when not on period!!please get it seen to x

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