Endo and bowels

[Mustang2598]

Morning. I’m getting really frustrated at the moment. I seem to have no end of problems with endo on the bowel. I either can’t go or can’t stop and seem to have pain either way. I have confirmed endo after having an extremely large endo cyst removed abo it 4 years ago and waiting for a lap but that is at least 6-12 months away. I have a Mirena coil in and have prostap every month. Seem to be at my worst in the lead up to my next injection which suggests maybe it helps and it’s just it’s running out. Having a bad flare at the moment and very fed up.

[Narcica]

Hi, I’d recommend you to start an elimination diet as part of a low FODmap diet. Also I am taking mebeverine. A part of my bowels have been removed 3 years ago due to similar problems. Most women has IBS with endo they don’t even realize it. I have a Mirena which never helped, I also have Decapeptyl injections three monthly plus estrogen gel daily. You can follow me on IG plate_coach I am sharing infos and my experiences.

[Mustang2598 in reply to Narcica]

Hi and thanks for the reply. I was diagnosed with ibs years ago after no real tests to eliminate anything else. I don’t think I have ever had ibs. Think it’s always been endo, but once you get the ibs diagnosis it’s hard to get rid of.

[Narcica in reply to Mustang2598]

Hi, Irritable bowel syndrome (IBS) & Endometriosis share many common features- low grade inflammation, visceral hypersensitivity, gut pain, bloating, distension, and altered bowel habits. So even if you do not have IBS the trigger foods could be similar.

[Mysterywomen]

So sorry to hear your in pain, flare ups are the worst. I too have endo on the bowel (they couldn’t remove it from there in last lap when they did overly removal) so managing with hormone daily progesterone pill and laxatives when I need it. Have some Movicol if it gets really bad and bowel stops. I am finding regular exercise, no caffeine and no gluten really helping. Reduces flare ups and pain for me. Hope you feel better soon x

[Mustang2598 in reply to Mysterywomen]

Hi and thanks for the reply. I am prescribed Laxido. Wasn’t easy as they don’t like prescribing, but on the whole, half a sachet a day does seem to help (unless I’m having a bad flare where nothing works). When I have a flare, I tend to find even pain meds don’t really work. Only thing I can do is use a heat pad which helps a little. Just so frustrating at times as I’m trying to get fit and lose weight but then this just flares out of nowhere and I can’t do much for days. Got my next prostap on Friday so hopefully that will help for a few weeks x

[MalachiteAli]

I am having these symptoms. I am in a flare now. I was constipated for 48 hours and in loads of bowel pain, naproxen and cocodamol weren't managing, though I know cocodamol increases constipation so I didn't want to take it and normally don't. I wasn't able to sleep and need to sleep so I can work but am off now anyway cause of pain. Dr has prescribed me amitriptyline instead so I can take in the evening to sleep and not resort to cocodamol on top of naproxen.

I've been having bowel symptoms all my life, alongside endo symptoms tho I didn't know either were a thing. I'm really worried now that the endo is in my bowel. When I have a flare, I feel bloated, blocked up, get constipated and have terrible grinding abdominal pain that changes as I feel things moving in my bowels. Sorry if that's tmi. I always thought I just got anxiety belly, as I get diarrhoea, pain on going to the toilet, bowel pain, constipation, nausea and trapped wind fairly regularly.

I am scared of surgery as it's so final, once it's done, it's done. If they discover that it isn't the ideal treatment 5 years later, that's too late, once you've had it. I had endometrial ablation because they told me I didn't have endo just menorrhagia and cause I requested lap sterilisation they discovered I actually do have endo. I've spoken with lots of women who've had continued endo or pelvic problems after hysterectomy. So I'm going to try everything other than that.

But I'm worried that I'll be advised to have bowel resection because of endo in my bowels, which seems like such a major op. I'm hopefully it's outside and just pressing on bowels when inflamed. I don't think there's enough evidence for most of the treatments we are offered for endo and certainly not for surgeries as there are so many complications and poor outcomes. But we are so desperate for something to change and for someone to just fix us...

[Mustang2598 in reply to MalachiteAli]

I feel your pain. Thanks for sharing. I think the majority of my pain is caused by constipation, even when I shouldn’t be constipated!! I am prescribed a small amount of Laxido each month (don’t think my gp likes prescribing but was told to by the gynae). Half a sachet a day normally keeps me ok, but when I flare, it makes no difference. I can’t go and this leads to pain which makes me feel sick etc. I can’t have any more time off sick. I’m already on an action plan though I was only slightly over last year. I just have to carry on in pain. Mornings are always the worst. Nothing seems to help.