Endo in bowel - should i opt for surgery

I was diagnosed with stage 4 endo in march - 5 months of prostap injections followed but did not really do much to ease symptoms or stop bleeding really. so i have been referred from my original gynae to an endo specialist who is performing a laparotomy early next year to remove the recto-vaginal and detach my ovaries from the uterus wall which are completely stuck to the back of uterus on both sides. he also advised i have it on my bowel and need an mri to see if it is penetrated into the bowel. if so he has said a bowel surgeon will need to accompany him in surgery to remove it. I am more bothered about trying to rescue my chances of fertility rather than getting rid of pain. i must have a high pain threshold as he has said its one of the worst cases he has ever seen yet its never really bothered me too much i just got on with painful periods and break through bleeding thinking i was just one of the unlucky ones. so if i say to leave the endo on my bowel beside pain are there any other complications?

8 Replies

  • Try and get shaving instead of "resection" as its much safer!

  • Thanks for your response he said shaving would only be possible if the endo hasn't penetrated the bowl. I have spoke to my partner and family and I think I'm going to ask them to leave the bowl alone for the time being and concentrate on the pelvic area. I've got my own business and can't really afford a lengthy recovery period at the moment. I was worried that it could lead to other conditions if left untreated in bowl. But can't seem to see anything on net etc so I'm feeling confident at the moment :) xxx

  • Dear silker,

    I wanted to share my story as it is scarily similar.

    So after coming off pill I started getting really bad period pains on cycle days 2-3, spotting 1 week prior, periods irregular upto 42 days apart and after trying to conceive for 2 years I was not getting anywhere. So off I went to docs for tests and all were fine. They also referred me to fertility clinic and I had an hsg that was clear and this was fine. I then had an ultra sound that showed 2 cysts one 2.5cm and the other 5cm. I has my first laparoscopy in August tis year and it revealed that the cysts on the left side was attached to my ovary, uterus, pelvis and bowel and it was too tough to remove in day surgery. They didn't attempt to remove them as they needed an MRI scan to show how deep into the bowel it was. I got an MRI 3 weeks later. The consultant told me my endo was really badly stuck at every side possible and it was at stage 4. I had my 2nd laporoscopy 2 weeks ago and they managed to clear it all and unstick everything needed to make a baby.

    Now I am delighted that I have a chance to conceive naturally or at least by ivf. Mines sounds as severe as yours and with an expert it is possible to get rid of it all without damaging the bowel. They managed to remove it from my bowel and they didn't damage my bowel and it wasn't just attached to the surface.

    I wanted it all removed as I didn't want the bowel to reattach to anything else again or at least for a while.

    I hope your op goes well and you decide what is right for you. I was better after a week and after 2 weeks feel pretty normal.

    I hope you recover well.

  • thank you so much for sharing your story, my previous partner and I tried for 2 years also which I what took me to the doctors in the first place.glad to know there are chances of removing it all I'll have over xmas to make decision. feeling very hopeful, even if I did just spend the whole night awake in yelping pain!!!

    thanks again

    Katie x

  • Your recovery time will be exactly the same whether you have endo removed off bowel or not. I had lap to remove endo from bowel on Thursday, there is no way I wanted to walk round any longer than I had to with that thing on my bowel. Most cases it hasn't penetrated the bowel, it is just on it. If I had left mine who knows it may have eventually penetrated my bowel! then I would be in trouble

  • thanks, suppose it's just knowing the complications that has worried me.

  • But if you leave it on your bowel then it will complicate things. Endo on the bowel causes infertility too as it creates the wrong environment for sperm, eggs to thrive. Having it removed from bowel increases fertility x

  • ok thanks, that's really good to know, thanks for info x

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