Endometriosis on the bowel

Hey everyone,

I had a laparoscopy in July and they said I had some endo on my bowel but couldn't touch it because it was too risky. I often feel so bloated, have an upset stomach and get quite a lot of pain from it especially if I need to go to the loo (tmi)

So was just wondering if anybody else had this that couldn't be removed and what helped/if they could do anything else?! I try buscopan. I'm seeing a gynaecologist on the 29th xxx

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15 Replies

  • Hi, I also have endo on my bowel and I am going to get it removed in November so I know that while it is complicated surgery and it does have some risks an specialist should be able to to remove. Did you have your operation at Specialist Endometriosis Centre? bsge.org.uk/ec-BSGE-accredi... If you haven't it might be worth asking being referred to one if you still want to go down the surgical route. They will have colorectal surgeons as well as gynecologist.

    Diet might help with some of the symptoms. Have you look into the endo diet? It might worth giving it a go if you haven't done so yet while you decide what to do. I been doing it for two month and still undecided if is helping me or not but many woman notice improvement.There is lots of info about it online endo-resolved.com/diet.html

    Hope your appointment on the 29th goes well xxx

  • No I haven't looked into the endo diet will definitely take a look. I'm hoping the gynaecologist will give me some ideas as I've been so unwell since the op don't want to go down the surgical route yet but would eventually if nothing else is going to help

    Thank you :) xxx

  • What were their reasons for not removing it? Is it because their surgical expertise was not in that area? If so, I would recommend you seek another opinion, and ask to be referred to a specialist endo surgeon who has worked with bowel adhesions before. I had mine excised from my bowel about 3-4 weeks ago. I had 3 surgeons operating on me, including an endo, bowel and bladder specialist.

    In the lead up to my surgery I found that changing my diet helped to reduce some of the symptoms. I am sticking with the diet post-op as well. It is an endo specific diet which eliminates gluten, dairy and soya from the diet.

    Good luck with your next appointment - is this with a different gynae? I hope you start to feel better soon!

    soub x

  • Just wanted to ask how you found the surgery to remove the endo from your bowel. I have been offered surgery for his but really I decided whether to go ahead as I really don't want to end up with a colostomy bag if at all possible. Thanks x

  • It was because their expertise wasn't in that area. I'm seeing the same Gynaecologist who put me in for the op but he didn't even believe I had endo even though previous gynaecologists did.

    I'm definitely going to look at this diet and I do seem worse after certain foods.

    Thank you, no the same gynae as before the op x

  • Hi kirStie

    My GP fobbed me off telling me I had IBS, even though I had other symptoms leaning towards endometriosis! I stupidly left it another 6 months before going to a different GP who didn't even bother sending me to a gyne just sent me straight for a scan which showed I was riddled with Endom and I was booked in for a laparoscopy. But fertility was my main concern so that's probably why they went straight to lap

    Anyway it was too bad for the local hospital to sort and because it was all over my bowel as well as ovaries, so they had to refer me to an Endom specialist. He was in Plymouth in my case.

    As the others have said he had a bowel surgeon with him in the operation and whilst it was very scary (you have to sign a form saying you understand they may have to fit a colostomy bag!) I did feel better knowing it was being done by specialist surgeons. They really were brilliant and so helpful and kind. They managed to take off quite a lot of the Endom from my bowel although sadly my left ovary was so badly squished under the bowel they couldn't get to it. They couldn't operate too deeply on the bowel for risk of damage, but as getting pregnant was my main concern they cleared it up as best as they could. I certainly found going to the toilet better after the op and less bloating. I do still get pain especially around my period but it's treatable with pain killers.

    I would advise speaking to your gyne about seeing a specialist Endom surgeon who will automatically have a bowel surgeon present in your case. The Endom will just get worse, and your pain may get worse too. I left it for years and years, I'm 42 - just thinking I was unlucky to suffer with such bad periods, while all time time the Endom was growing more and more and affecting all my organs not just my fertility ones!

    Good luck in getting this sorted. But also remember it's your RIGHT to push to see a specialist, and to get your health on track. Endometriosis is a disease and and sufferers should be treated correctly. So many women get giving drugs to stop their periods and oestrogen production so the Endom can't carry on growing, but this is only a short term solution. And as soon as you have periods again it will start to form again. Having a lap is the way to go.

    Take care x

  • Hi there I had a very similar thing and have been left with some endo within the bowel wall .It doesn't cause too much problem but occasionally I do get IBS symptoms with .

    I sometimes take mebiverine prior to meals and this helps a little I do occasionally take some pain relief as well if it gets too much .Failing that surgery is the next option if it gets too bad.

    Speak to your gaeni about your options ...it's all horrible and so sorry you are going this take care

  • Hi, I also have endo on the bowel, bloating, pain sometimes when going to the loo and was told it would be risky to operate. I have been cutting down on wheat, gluten, milk etc and the bloating has eased. I also take a teaspoon of psyliium husks in water twice a day - this forms a natural gel which helps regulate your bowel, Ive found it helpful (you can buy them at health food stores, but you must drink plenty of water too). I have asked to be referred to a specialist endo centre as I felt my regular gynae team didnt have the knowledge to help me. You have the right to ask for a referral - jsut ask your GP.

  • Yeah I will be waiting to see what the gynaecologist says in a couple of weeks and definitely cutting down on dairy etc as it seems to be worse after having milk.

    Thanks for your replies will definitely try out what you've said :) xxx

  • Hello! I feel like I am in a similar situation. For years I have suffering with severe bloating, immediate bowel movements, paralysing pain and dyspareunia and was mistakenly diagnosed with IBS, even though I insisted the pain didn't relate to food. After insisting on having an ultrasound they found 2 10cm cysts which turned out to be endometriomas, I went for surgery to have them removed and discovered I had stage 4 endo and my bowel was also stuck to my uterus. I've had 5 months of prostap injections and an MRI to discover the cysts have returned and my bowel is also stuck to my ovaries as well as uterus. The consultant couldn't really put me in the right direction of what to do. There seems to be no definite outcome which is the most unsettling part. The risk of damaging my bowel and having a temp colostomy bag scares me the most! but not having surgery and risking my fertility is just as worrying. The consultant has said it is completely my decision and that has made it harder for me. I kind of expected them to tell me what to do for the best but because every case and body is different it is so hard to tell. I've read that with stage 4 there is a higher chance of re-occurrence? I'm waiting to see how much of my bowel is involved and until then I have to decide whether to have surgery, but I just feel so in the dark about everything! If they can't operate like yourself I also feel like I'm not sure what else to do!

  • I had my 1st laparoscopy 3 years ago things settled down. However for last year I been getting so bloated and when eat certain foods or fizzy drinks etc so been eating little and often and just cut out wheat and gluten which really helped. Docs did food allergy tests and did not consider endo at all. Know just come out from 2nd laparoscopy and was found lots of places including bowl, bladder, pouch of Douglas etc he said I got to go back in 6 weeks to see gyno as part of bowl they could not get to and might need a bigger opp in it. Have u gotten any further with yours ? Or found out more

  • Hi, yeah I've had a lot removed, had an operation 3 weeks ago. The bloating was pretty bad but it does seem better atm. Am also going to try the diet once back on my feet to see if it makes a difference. The bloating is one of the worst things though. Hope they can resolve it for you xx

  • That's good to hear glad u are feeling much better and bloating getting better. I'm getting married In 8 weeks so will find out few weeks before if they want to do another one or not. Been to docs to discus other options of controceptive etc but got no where so just a waiting game for me again now. I think I'm going to try that diet most of it I started to do anyway but good that it tells you why you should avoid it :) helps to keep it up, best of luck with things

  • I had endo on my bowel and my second lap involved two colorectal surgeons over six hours, so they weren't wrong when they said it could be a bit risky!

    There's the possibility of needing a colostomy bag so surgeons are scared to do it but a decent colorectal surgeon should be able to at least give you a good indication of what they can do.

    I ended up having my bowel shaved back and I couldn't eat red meat or spicy foods for six months. Basically brown rice and veggies to be safe.

    As someone who suffered from chronic diarrhoea as well as the pain it's changed my life.

    Good luck.


  • cani ask if you get lot of gas pain and stuff ?

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