Endo and the bowel

Hi all, I was diagnosed with Stage 4 endometriosis in September following a laparoscopy and was told I have a lot of lesions in my bowel. One of my ovaries and Fallopian tube was actually fused into my bowel which the surgeon managed to free but, he wasn't able to do much more as was afraid he'd damage the bowel. He said any more surgery could result in needing to remove part of the bowel which he is hoping to avoid (certainly at this stage) as that could in turn result in me needing a colostomy bag (something I'd also like to avoid if possible)! However, since the operation I have been struggling going to the toilet as have been very constipated. I have started cutting out gluten, cows milk and soya as my consultant suggested reducing heavily processed food might ease the bowel pain. It has worked but I'm wondering if the diet has caused the constipation or if it's because the surgery irritated my bowel? Does anyone have any similar experiences where they can offer some advice?

Thanks!

11 Replies

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  • Could be a combination of the two . You could ask gp if you could try something like Laxido to help soften stools so it's easier to go.

  • I've had exactly the same issue, unfortunately my bowel was irreparably damaged during my hysterectomy when I was 25 and I am having all of my large bowel removed next year which will leave me with a temp ileostomy.

    However this is very unlikely for you Hun, the bowel is one of the most sensitive organs and doesn't like any upset. They should have told you that it can take a good few months to settle but will leave you with the symptoms you have now. Cutting out gluten etc will help you massively as its a big irritant when the bowel has had a trauma.

    It can be frustrating but bear with it, it will get better.

  • Hello there

    I was diagnosed with stage four endo this year, after a six hour operation in May to remove the mass I had on my organs my bowel also had to be disected from my organs, I'm now suffering with constipation & bleeding from the rectum every month when I'm on my period, just had a full colonoscopy this week but the doctor said he couldn't see any cause for concern, this I find rubbish, I also have laxido, which I'm going to give a go this month & im going to look into going gluten free, glad I'm not the only suffering with this.

  • I too had the exact problem. I had a bowel specialist at many operations I had to remove endo which came back every year. As a result I now need help to empty my bowel and use a kit called Peristeen.

    Eventually 12months ago I had a full hysterectomy unfortunately I still suffer with bowel problems and am likely to use Peristeen for the rest of my life.

    Try the stool softener and lots of water, no carbs does help. Maybe in a few months it will settle.

    All the best x

  • My bowel is fused to womb and can't eat fatty foods, fried foods, diary products, white bread and cars, fizzy pop, alcohol and coffee.

    If cut these out I feel fab. If I eat them I know about it pain wise. It's off the chart, which is an ambulance job.

    I live on scrambled eggs and baked beans brown bread and chicken with veg.

    Decaf blk tea.

    I'm always constipated and used stool softeners daily.

    Lost 3 stone due to this.

    There is some you tube bids about endo diet that helped me xxxxxx

  • He shld have sent u to a specialist once its in the bowels u will b constipared.as I have been forever. If u live in a small town and theres no endo centers.that specifically treat the disease. Get a referal from any kind of doctor and tell them u wanr to c a gyno to treat endo in the bowels. Also request an M.R.I. of your pelvis and make sure its coded for endometriosis. I'm going tonight to have one. I will take it to my appt which is at a cancer center on fhe 30th. Dont know what kind of birth control ur on but u better get a high progesterone pill wirh no estrogen. The estrogen will keep your endo spreading. Listen to me, I've had this for 26 yrs, and like u my doc did surgery but never refered me. Its there egos. U must take care of this. U have ro demand a high progesterone pill, demand an M.R.I. with contrasr, demand a referal. I've given u what u need, dont suffer like me. Although I askes to b put on the pill after surgery it only masked the symptoms, once off the pill it all came back worse than b4. U can also get natural progesterone on line or from a compound pharmacy if u don't want tonuse birth control. It will keep ur endo from spreading butbit nn is not a cure. Best of luck.

  • Sorry you're having to deal with this! I had my uterus attached to my intestines because of the endometriosis and had them detached through surgery. I didn't have constipation after the surgery so I don't know whether that in particular would have caused this, but it definitely makes sense that your bowel would be more sensitive.

    I think if not eating milk and gluten has helped than definitely keep doing it! Some people are sensitive to these things obviously and milk tends to make people constipated in general. Also I personally find that what helps is to eat enough veggies every day.

    Also are you taking opiates for pain? They can cause constipation too.

  • I had the exact same problem. They found similar in my surgery and it was intensive. My bowel was in the wrong place and stuck to my organs and then my tubes were stuck to my bowel and alsorts so I know how you feel it's horrible. I have grade 4 too. My bowel problems are still not good; I have had camera tests in the past that don't show,anything- I hardly eat as I have zero appetite and always feel full and it's horrible. I wish something could be done

  • Ive just found out i have stage 4 endo and also have it around my bowel area. i,ve had a lap back in feb to have my cysts drained and endo and they also removed my Fallopian tube but now i have awful pain on my ovarie during my period. The pain has been that bad on some occasions i feel like i am going to pass out. I suppose i am one of the lucky ones as i am 39 and have 3 beautiful children and a loving supportive partner and at last feel like the gyno is on my side as she is referring me to a specialist who deals with endo. She actually listened to me once i refused the coil or more silly pain killers that never touched me anyway. I am a little worried about open surgery but does anyone know if because i have endo around my bowels now as well as my ovaries do you think they can still do a hysterectomy through keyhole surgery.

  • Hi Broderskim 39,

    I had a lap for the same reasons as yourself - as they refused to start me on IVF without it. I lost both my tubes, had cysts drained, and some endo removed from my bowel. Since then I had 3 failed attempts at ivf. I also have quite severe pain every month near my left ovary/ pelvic pain and have difficulty going to the bathroom with my bowels at this time. I was told they couldn't do a hysterectomy through keyhole, and despite the pain relief 'Tramadol' on high amounts during this time I just feel wiped out, fuzzy headed and still in pain. I'm 41. You are fortunate to have 3 children and a partner who is supportive. My partner tries to be, but actually thinks it's in my head or I'm making excuses. If you make any progress or find something that works please could you share this with me. Sorry I don't have an answer for you. I just hear 'people are all different'. Best wishes.

  • Thanks for your reply lovely... hoping your feelung better x

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