Endo on the Bowel

Hello everyone, hope everyone is ok :)

I am currently waiting to see my gynaecologist, I'm on the prostap injections which have helped with a lot of symptoms, but I was previously told I had endo on the bowel and I know the injection won't help that (so I was told) but I was wondering if peoples symptoms had got to the point where eating anything just caused bloating and either constipation or needing to go the loo soon after eating. I've been getting a lot of pain in my sides too especially the left. It's making me feel so miserable as it's got so much worse the last couple of weeks I'm struggling to cope with it


24 Replies

  • Hi

    I've been put on the pill to reduce symptoms but haven't even been diagnosed properly yet. I have a lot of bowel symptoms and left side pain so I know how you feel! Have you had any bowel investigation like a colonoscopy? Xx

  • No I haven't was only told I had it on the bowel and it wasn't touched as too risky I'm hoping my new gynaecologist will be really helpful as he's very good, my previous gynae didn't seem to have a clue xxx

  • It sounds like you need to make sure that your gynae works with a colorectal surgeon to remove it as they'll be specialised in that area. Did they diagnose you with 'IBS' before they found the endo? I have the constipation, bloating, pain and gas problems and I've been fobbed off for 7 years with 'IBS' but I know there's more than that. I had a normal colonoscopy so that kind of proves it! What do you use for pain? I try and struggle through with paracetamol but it's really hard to keep going, especially working full time xxx

  • I usually rely on paracetamol/codeine/ibuprofen and a heat pad. Yeah I can't wait to see my gynae and discuss it with him to see what he says. I was told about IBS ages ago, but that's just by my GP and I think it's so common for them to diagnose you as having that with the symptoms being basically the same xxx

  • Hello, I have endo on the bowel too.m

    When I have coffee, alcohol, beef, wheat, dairy, pretty much anything that isn't vegetables, I bloat within 5 minutes, and I bloat to the point where I go up a pants size or 2! and I am mostly always constipated, but I find that after eating bran I have to go suddenly after.

    My pain is also mainly on my left but that is due to my left ovary being stuck to my bowel, so I don't know if this applies to you. Hope I have helped! Xxx

  • Yeah I'm going to try a different milk in my coffee and tea. I seem better on brown bread for toast then any cereal/porridge atm. I can have a baggy top on but as soon as I bloat it's no longer baggy. It's a nightmare to have isn't it. Peppermint tea is a little saviour atm though xxx

  • I'm a new diagnosis, I have basically the same problem as MeganMae except I have endometriomas encasing both ovaries and tubes I've done so research due to not having been given much information other than I have nodules on the bowel (I'm not sure if the Pouch of Douglas is connected but mine is effected) and I decided to ...'experiment'...,for want of a better word, I looked at loads of diet sheets for all different conditions but decided, because none of them grabbed me, I would pick certain foods that I liked across the board and incorporate them into my diet for a few days straight, I did notice a decrease in pain levels in the left side my bowel felt better, not that I could FEEL it in that sense just it felt more 'normal'. I'm now fairly certain a sit-down with a dietitian would help me. My bloating was minimal (I too gain pants sizes) but I did bloat probably 1/3rd as much as I usually would, and bathroom trips were improved I went twice in 3 days which is a marked improvement considering I usually go my entire cycle constipated and only go once, the day before my period starts, like clock work, in fact I didn't even bother remembering when my period was due, my body give me notice! I walk as much as I can manage when the pain starts and rest before going again I'm probably just thinking crazy but it seems to help. Painkiller wise nothing that can't be bought over the counter I never take the same paracetamol based product 2 days running I take 400mg Ibuprofen when I need to, the Dr will give me these, when I really need to, heat helps on my back and a pillow between the knees reduces pressure on the hips.

    I hope I haven't rambled too much and I've helped a little, this is my 1st time commenting on somebody else's question :)

    ~Kelly xx

    p.s I ate peanut butter and skittles and Reese's Cups (not the pieces) as I found in I THINK a gluten free diet sheet as free foods which I took to mean free from additives (the packets confirm)


    ^^thought this might help you^^

  • Do you mind me asking, have they suggested/offered you further surgery to remove / un attach everything? Or have you already had it?

    I'm waiting on surgery in December And wondering if the symptoms will still be there after?

    Your information helped me, thank you!

  • Hi Megan, I think you mean me? I'm having my first operation relating to endo in 6 days (omg I'm so nervous!!) it's exploratory to stage my, and providing it's not too sticky they'll slice off the tops of the cysts that I mentioned, I have others too I'm assuming they'll at least be looked at, the aim is to improve fertility (I have no further information in regard to this) they have a referral to the Endo Clinic (I'm in Liverpool, being treated at Liverpool Women's) to complete they haven't told me when to expect it. That gives me access to an Endo specialist surgeon, I think that's when it starts to get serious, I know they have to explore the Pouch of Douglas further and that needs somebody experienced. What happens in the future is a mystery I feel like I've had to get comfortable with going for the ride without a map (awful example :/ sorry!)

  • Sorry, yes I meant you!

    Oh good luck for your lap! I hope it goes well for you and you have a quick recovery. Prepare yourself for the gas escaping, I was underprepared for it, I've read something called Gas-X is a great help, I'm stocking up for this surgery!

    I hope everything goes upwards for you from here on xx

  • I am solos awaiting surgery for bowel endo but I have also gad a diagnosis of diverticular disease on the bowel with mostly side pain this showed up on ct scan

  • This is exactly the same as me. I am 34 years old and have been diagnosed with severe diverticulitis for my age. Also have severe endometriosis on the bowel and everywhere else. I'm in agony mist days. I have my 3rd laparoscopy next month for removal of part of bowel. Has anyone had that done? X

  • I'm 43 and was told I am far too young to have diverticular disease ...

    My diet is good and lots of fibre always have done it makes no difference to the constipation or loose stools ,wonder if there maybe a link with endo and diverticular ........who knows !!!....

  • My doctor told me when you are contipated eat fiber. When dioreha no fiber. When you bleed don't eat to give the bowel time to recover.plus you need an antiobtic. I stick to this. I don't want to be taking tabs . Cause am afraid as I have bowel incointinece. So have to work out what is best for me

  • You too have my diocese too diverticula. Also have a stricture in the tranverse my divatuclar is a sigmoid. So happy I am not alone with this. So people with Endo have this as well . Being on two antibiotics due to bleeding cause the divatuclar is active

  • Hi, One of my symptoms is what you have described. I have been diagnosed with endo on my bowel as well as other areas and because of this I have to be careful as to what I eat and how much I eat before it causes pain. I have adapted to having very small meals but lots of easily digestable smoothies or juices. Although im still not completely pain free it does make some difference. I hope it helps :)

  • I am having surgery next month on my bowel. I have gynaecologist and bowel surgeon working together to remove part of my sigmoid colon. Has anyone had this done before? How long was recovery? I'm so worried as have a 2 year old to deal with and get a 9 year old to school. But I'm actually looking forward to it as can't keep dealing with this pain everyday. I am currently on prostap as endo is so bad. Gynaecologist recommends a hysterectomy but said I will still probably have pain after as it is so severe

  • It seems so common, I wish there was easier solutions for this as most of this week I've found it unbearable and had to work from home a few days. I've been looking into what foods are best to eat and avoid. Am going to try and see what happens some relief would be lovely xxx

  • The 'endo diet' has helped me so much. I'm gluten, wheat, dairy, egg and caffeine free. I eat lots of quinoa, while the only rice I can tolerate is basmati. I've also given up meat except for organic chicken, which I have maybe once or twice a week. I eat plenty of fish. I take a Wellwoman vitamin and evening primrose. I've found recipes for sweet treats using natural sweeteners like maple syrup. Honey is a no-no, though. I really suggest you look the diet up. As for juices, I have a green juice daily - I try to go organic - celery, kale, cucumber and spinach (only add this one a few times a week), plus I mix in pineapple to help with the inflammation. Check out Deliciously Ella - blog and recipe book. It's useful, too. I also drink green tea which helps, but must be organic and decaff. I do still bloat and suffer pain which is horrid, but the diet has reduced symptoms considerably. I feel healthier, my skin is better and my hair has started growing again too. In a few weeks, I have an appointment with a top specialist in London - hopefully he can help where my previous general gynaecologist was unable to. Good luck to all of you, too.

  • I have been drinking peppermint tea and love the relief it can give. Am on quite a lot of vitamins too, as seem to have more dry skin and seem to be worn out quite quickly so trying to work on everything to make things easier. I'm definitely going to be cutting out what I know aggravates me have already cut out white bread/pasta/ rice and don't go near pizza anymore. It's a massive learning curve but happy to do anything to live a more normal life.

    It's a relief in the nicest way possible to come on here and know you're not alone xxx

  • I also have endo on my bowel and lots of other areas but I get pain on my right side does anyone-else have it here as everyone seems to say they have pain on the left side. Ive already had a colonoscopy and sigmoidoscopy so I know its not inside my bowel, I have also cut out all wheat and gluten foods but find I get the pain more when sitting down. If I lie down its a lot easier. My gastroenterologist thinks its endo and my gynaecologist thinks its something-else. I feel like im just getting pushed from one to the other.

    I am having an op in December to remove right ovary, parts of endo off bowel and both ureters

  • Me I get a pain on my right side that start in my back and radiates to my front. When I walk it catches me and I limp from the pain. Very sharp. No warning to when it happens. Just grips when it does

  • There must be two types of this diocese.one with diverticula.who have pain on the right side

  • So glad not only did I find one person with diverticula but a lot more. Who also have Endo. How many of you my friends is the divatuclar active. Cause the earlier you got this the more likely for it too become active.

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