Endo and bowels?

When I had my laparoscopy last Feb, I was diagnosed with endo. My right tube and ovary was stuck to my bowels also. I also have a bleed from my bum (sorry tmi) sometimes.

I can go days/ up to a week without any opening of the bowels. I get awfully constipated too and causes bloating. Sometimes when my body is relaxed, I am woken up by an almighty pain, sweating, sickness, weakness and shaking. And my bowels open and I pass. This will go on for a good 20 minutes. It will then go, come back a few hours later. I have been up alllll night with this!

Is any of this linked to endo? Does anybody else have something similar and/or endo on their bowels?

Any help appreciated xxxx

32 Replies

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  • hey there, I had a lap done a few days ago which confirmed endo, but I definitely have struggled with my stomach and bowels ( they always said it was ibs) but I can definitely relate to the bowel spasm sounding pain. It makes you vomit and shake, hot and cold flushes. I believe all this pain is related to the endo especially if it directly affected your bowel. Just keep an eye on the pain and I would go back to the doctors see if there are any muscle relaxants to ease the pain.

  • I don't bleed but I too have bowel issues.

    I've been very regular before endo appeared. Since then I get occasionally constipated and when I do I tend to eat a lot of veggie dishes with lentils, aubergines, etc. And when that doesn't help I get prunes out: 5-7 prunes after dinner & a glass of water. Repeat daily until plumbing is back to normal.

  • Hi! I think it might be related. I have suffered with bowel problems for 20 years. I see a specialist for chronic constipation and use a system a bit like having a colonic irrigation to have a poo everyday along with several other drugs.( too much info lol). Two years ago, after years and years of hell period pains and a scan showing up cysts, i was diagnosed with Endo. This was all over my ovaries and my bladder and bowel are all stuck together. I have been having Zoladex hormone injections and my bowel has actually improved! I have been totally pain free from Endo and maybe it has loosened the grip on my bowel or something. Now i go to the toilet so much more and less pain. The test will be in the next few months, i have finished my hormone treatment now, so if my bowel problems come back, i will be convinced that Endo has an effect on this. I need to add tho that although i have been pain free on zoladex, the other side effects that have built up towards the end of treatment have been so horrific that i regret touching it.

    I really do think bowel movements can totally be affected by Endo...so if there was a way the endo could be treated to free up any grip on the bowel, it could make a difference. Everything is so complicated isn't it. Who would be a woman. Lol. Take care xxxx

  • What are the other side effects from the Zoladex, if you don't mind my asking?

  • The only effects as I know were; hot flushes, headaches, tiredness, mood swings, skin change (acne), bowel problems (I've had these bowel issues before I touched zoladex), weight change..

  • Hi jackie, i think the drug worked amazing for my endo pain. I had niggly pain a few days after each injection and that was all really. But i noticed i felt anxious and nauseous. I have depression anyway so just put mood changes down to that. Anyway, i have kept a diary over the last 6 months. Pain side has been perfect but I have lost a dramatic amount of weight, i have been anxious, vomitting, my hair has lost half its volume and falls out,my depression is so much worse to the point where i have felt suicidal especially this last two months. Weighing up the pros and cons, i would rather have the excrutiating pain back and just try get stronger pain meds, than continue this. Nothing else has changed in my life other than starting this treatment. I had been really up-beat in my reviews for each injection. I wanted to continue because its been perfect for pain but then over the 6 months everything else has come to a head. I think if anyone already suffers depression, do not take it. It is great for so many people though. Just not for my sanity and other physical health xx

  • Thanks for that insight, Leese. I do have a history of depression and, not for about 10 years, but I did also have some issues with suicidal thoughts when I was younger so that's a great tip.

    I hope you're feeling better now as that really is no way to live. ❤️

  • Yeah, i wouldmake sure they take any mood issues you have had very seriously. I've had to weigh up the benefits of no endo pain against everything else. Takecare with evetything. Keep us updated. Much love xx

  • I agree completely. It worked great for my pain, but I was unaware of the mood change. I couldn't cope at all well whilst on zoladex with my depression and anxiety. I become such a horrible person on it and it changed my life so much x

  • It is so scary. I am convinced that my hair losing is down to this. It is literally half the volume it was. It is scary. That alone is making my mood swings soooo bad. My depression is centered around body image too so my hair thinning is tipping me over. I am scared all the endo pain will come back now i am stopping the zoladex. I feel very very stuck. I am due to have 7th injection on monday but i'm not. I got prescribed diazepam yesterday. I feel like zoladex has gave me a whole set of new problems. Xx much love to you. Shit being a woman lol xx

  • I was the same, terrible pain during period with bowel movements. Turns out I've got strictures of the bowel due to endo scarring. I've been on zoladex 20 years now, and until recently it suited me in every respect, I got my life back. Now of an age when I think natural menopause is kicking in, although chemically everything is as it should be, I'm definitely seeing a difference, I'm now on zoladex, hrt , pill and coil as my consultant wants to avoid surgery for as long as possible. Still better than the pain I used to suffer so not complaining, will just have to see what the future brings.

  • Hey, thank you for replying. I too have just finished my zoladex treatment! They said I had endometriosis on my bowels as well. I too have been pain free from the zoladex, but the side affects have been horrific. I have been such a vile person, I couldn't cope with the hot flushes.

    I know so so many problems lol!! Thank you xxxx

  • Hey there, what follow on treatment was proposed and was your lap in general gynae or a BSGE centre?

    It sounds like you need further investigation if your bowel is bleeding to check the Endo has not infiltrated through the bowel wall. I had a sigmoidoscopy after my diagnostic lap others need colonoscopy ( higher up) .

    Also as you have Recto Vaginal endo your Endo is classed automatically as severe and should only be treated by a BSGE accredited Endo specialist centre on this list bsge.org.uk/centre/

    If you are already, great. If not use page 6 in this nhs treatment spec document to get onward referred by either your GP or your consultant

    google.co.uk/url?sa=t&sourc...

    I've just had surgery to remove Endo on the bowel and after a difficult 8 weeks my bowel and bladder symptoms are much improved and much of my brain fog has lifted too.

  • Hello, well I have just finished my 6 month course of zoladex. I am now awaiting an appointment to see my gynae to discuss how I have been and now after the zoladex. My hospital is so slow and awful for appointments, you get lost in the system. My gynae also seems to keep fobbing me off, telling me I haven't got it too bad. He found it on my bowel, my right ovary and tube was stuck to my bowel. Also near my bladder he said? I just don't know what to say or do anymore. I've been fobbed off for 9 years now. Thank you for that info, I'll look into it now x

  • I would ask the consultants secretary for a copy of your operation notes to be sent or emailed to you so you can plan what questions to ask.

    There is a definition of severe in section 1 of spec.

    "Severe endometriosis for the purpose of this specification is defined as either deeply

    infiltrating endometriosis or recto-vaginal endometriosis. Deeply infiltrating endometriosis

    exists where the disease invades at least 5mm below the tissue surface and can occur in a variety of sites, such as; bladder, pelvic sidewalls, ovaries, pelvic brim, bowel surface and diaphragm. Recto-vaginal endometriosis is endometriosis which involves the recto-vaginal septum area (recto-vaginal septum, vagina, utero-sacral ligaments, rectum). There are many classification systems for endometriosis but none are universally accepted. The definition used here would accord with grade 3 and 4 disease used in the revised American fertility Score. (1"

    Zoladex isn't necessarily an inappropriate treatment as surgery to the bowel is not an insignificant undertaking and is higher risk than peritoneal excision hence BSGE centres.

    I took it for a few months but had an adverse reaction. But it's worth knowing that RV endo subtype is often unresponsive to hormone treatments ( in small scale research has been seen to be able to self produce oestrogens it needs.)

    endopaedia.info/subtype14.html

    The BSGE service takes referral from your GP if your consultant is awkward about it

    "The service will accept referrals from GPs and secondary care clinicians in Gynaecology,

    Colorectal surgery and Urology. The service will also accept referrals from other providers, particularly when the referring service is not accredited to undertake the clinical care the patient requires. The service will accept referrals for patients who meet one of the following criteria:

     Women with a diagnosis of severe endometriosis

     Non-severe endometriosis refractory to treatment"

    The main thing is your consultant, if a general gynae, does not have the specialist excision surgery training required for BSGE accredited Endo centre consultants and is not working to their standard in a multidisciplinary team to cover bowel and bladder at the same time so absolutely should not be operating on you.

    I think you would benefit from a BSGE transfer or at the very least a second opinion by a BSGE endo centre surgeon.

  • In my case I was told that I needed the op as my bowel was being distorted anatomical ly which was the driver of intermittant symptoms like yours with added fainting spells at the end ( very embarrassing) . Also the endo was close to penetrating my bowel wall. I was struggling with bladder symptoms from pressure from the 3 cm RV nodule along with dyspareunia and severe chronic fatigue as well.

  • Thank you so much for all that information. When I mentioned about my bowel problems in my last appointment, he simply didn't care. He told me if I think I have something wrong with my bowels I need to see my gp. But even though he found endo there? He just didn't make sense. I think I might go straight to my gp and speak about a referral. He told me he also burnt away the endo, then when I had an appointment with my gp as I was in alot of pain after surgery, woke up and I couldn't move... said he didn't remove anything he just done exploratory.

    Same as you, I'm always terribly tired, like exhausted. I slept all day yesterday and all tonight too. The feeling is so strange, it starts with sharp stabbing pains, to then I can't stand straight, I feel sick, dizzy, shaking uncontrollably, hot and cold flushes.

    It's horrible trying to explain to somebody who doesn't understand you and gets so frustrating, that I feel like nobody is listening x

  • Hi. My situation is similar except mine is the left side. I am waiting to go see a specialist in November to see what my next step is. What have they said to you is the next step?

  • I have been on a 6 month 'treatment' of zoladex now. Just finished but awaiting my next consultant appointment to discuss how I've been since and during the zoladex x

  • So they did surgery and then put you on zoladex? The only reason mine was found is because we're TTC. So I don't really what to delay that any further, hoping they suggest surgery over medication.

  • Yes, I had my surgery Feb 2016. Found endo and diagnosed. Took 6 months for my op check up when it was supposed to be 6 weeks. Started my zoladex Feb this year. Same as you, I would prefer to have surgery than chucking me on some medication that just hides the endo and symptoms.

  • Hi, your consultant doesn't sound like an endo specialist... I hope you can get referred to a BSGE centre. But maybe worth knowing that they tend to suggest surgery and medication. I don't think it's a question of surgery being an alternative. Without on going hormone treatments the endo is likely to simply grow back.

  • You have just described my exact symptoms. My pain is almost always at night and when any food has digested. Bowel movements have been a white knuckle ride sweating and sometimes passing out. I was diagnosed with severe endometriosis involving thethering of the lower bowel to rectum during a laparoscopic hysterectomy.

    Don't leave it as I did and make sure you have an endometriosis specialist and his team including a bowel surgeon treat you. I didn't get that opportunity and I am still suffering despite having had a complete hysterectomy. I am now being treated by a BSGE clinic and need another operation.

    Good luck

  • Iv had the same also after the op I had no feeling in my bladder , one of my ovaries was stuck in my bowel . I have painful burning pains in my stomach when I need to go and it now seems food related too

  • Hi

    I have had this happen i have woken up during the night in so much pain just like labour pains in my stomach and then gone to the toilet like you after i have passed a stool the pain continues for a while. I get the same symptoms shaking, sweating, feeling dizzy, feeling sick & labour like pains. I have been told i have endo but twice have been for a lap and not had it due to a panic attack. Hope me sharing what i have experienced just like you helps

    xxx

  • I'm going through something similar at the moment.

    It started 8 months ago. It starts with crampy lower stomach pains then the pain gets so severe I'm doubled up

    I'm then sat n the toilet jigging around. I have a normal BM 2/3 times then I have diahorrea until what feels like I've completely emptied.

    This always happens at night and it can go on for hours.

    It only seems to happen a couple of times a month.

  • Hi,

    That is exactly me too!! It's so strange everyone has the same symptoms, except I don't go to the toilet for a good few days. Yep, all night, then I think im okv then it starts again.. Such a horrible painful experience. Yesterday was a complete right off for me x

  • I always feel so sore in the abdomen after for a few days.

    It's quite strange as it all started when I was on zoladex. I had been on it s year when it all started and now I've finished zoladex it's happening a bit more.

    The pain is excruciating. I also get a deep burning pain in my back at the same time x

  • Mine started a few years ago, but has got more frequent and more painful.

    I've just finished my zoladex treatment.

    I get the back pain too! It's such an odd feeling. The whole experience is strange and is like different flares. You feel like it's going but then starts again x

  • I'm glad I'm not the only one that bleeds through the butt my looked at me like I was crazy. I actually have regular bowel movements everyday but they change everyday one day I can be loose the other I can be constipated. Recently I'm more constipated I blame the pill Ive been told to take continuesly. I also wake up with sickness and some days even sweating and general weakness but because I havent had food on time even after I had food I have stomach ache luckily though in the morning seems to be the only time I have bad pain anymore. I have recently changed my diet I have cut out gluten cut down on dairy eating more veg.

  • So today I have seen my Gynaecologist.

    I have explained my bowel pain and issues and I am now awaiting a MRI.

    The gynaecologist thinks that my bowel issues are not endo related even though my symptoms are very similar to those that have commented on this post 😬

    From previous scans they haven't been very helpful but then discovered during a laparoscopy that's things are severe.

    Has anyone had quite bad bowel endometriosis that's been picked up on a MRI?

    I've had patches before on the bowel but all my troubles were in the pelvis xx

  • When I mentioned to my gynae about my bowels, he said they weren't endo related either and kinda just shrugged me off about it.

    But a lot of people seem to have the same sort of problems with the bowel. So must be endo related. I was the same with the scan and then the op!

    I'm back with my gynae on the 23rd oct. So going to question my bowels again, as I know something's not right.

    Good luck with your MRI and keep me updated xx

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