So im at a point now where pretty much every bowel movement I have causes a flare up/is a flare up. It's almost once or twice a week at this point and it is agony.
I get the runs, my whole body aches, and I can pretty much feel my insides contracting and pulling apart and its some of the worst pain I feel. It's accompanied with nausea, sometimes really bad bloating, sweats and once the actual pooing part of the day is over, i need to wear my tens machine on my stomach and back so it distracts me from the pain.
I attend markets regularly to sell my work, have a studio and often volunteer so I don't usually get the chance to just stay home, so when its one of the busier days I probably wont eat until about 3pm and even at that the nausea can still be really bad.
Im still waiting for my laparoscopy and the gp wants to see me to check how my amitriptyline is doing for my chronic pains in a few weeks so I might mention some stuff to them because it's taking every fibre of my being to not be depressed about my health at this point. I feel trapped in a body that doesn't work and that I can't control.
Does anyone else experience the poo induced flare ups? Any advice? Ive basically lived off buscopan for months on end but have tried my best for the past few weeks not to take it as much and if I do immodium my stomach feels bruised š„²
If youve read this far, thank you x
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ArtyPal
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The lap will be diagnostic and the specialist I've been dealing with said there was not much point in a scan since it doesn't always show. But we've been treating my pains as endo while I wait for the surgery as it seems probable to the people I've been seen by.
I was meant to have the laparoscopy in spring but nothing yet so I'll be chasing it up soon!
arty I have no helpful words just wanted you to know youāre not alone. I feel exactly the same my body is held hostage by this disease and itās horrible. I feel that when I eat my bowels hurt too. Problem is Iām in naproxen which means I have fo eat otherwise I canāt take it. Constant pain cycle.. have also started amitryptaline only 5 days ago Iām hoping that will help.
Thank you for the kind words, it's so reassuring to know im not alone but it also sucks because i hate that this is something you feel too! I really hope the amitriptyline does you plenty good xx
Oooo enjoy!! I got a tens machine from amazon, just one of the wired ones and it's been an absolute game changer - especially if im standing at markets all day! I hope you love it xx
hiya lovely, recently dignosed stage 4 (operation Monday just gone actually!) I found that my bowel movements hurt on days that I had certain foods particularly red meats and acidic items. Beer would knock me out for count. See if restricting certain foods help and stick to anti inflammatory foods if you can. Just to give you a little hope my operation did show endro on my colon and even though itās been four days I can now go without pain :)(a little pain from my cut zones but nothing like before)
Hey! Thats really interesting, I'll definitely look at anti inflammatory foods for sure! I'm so glad the operation has helped with your pains! š„° Thank you xx
I should absolutly be more clear with the term stage 4 now thinking about it with the terminology often used with cancer. Thank you for highlighting it for me and I wish you all the best with your diagnosis and treatments ā¤ļø
I have terribel stage 4 endo right through my pelvis and bowel but the pain I have is not like this at all. I basically cannot stand up with pain at all when I have my period but when I don't I just can't go to the toilet and have to take laxatives daily. I have constant pain in my back which I think is caused by everything not working.
It doesn't hurt more when I poo just a dull pain 24/7.
It might be that you have something like Chrohns or something else. But everyone's pain is different. Any surgeon who is a decent professional would not suggest that you have a lap with a scan. An MRI is actually much more effective in showing up endo on the bowel and deep endo and adenomysiosis than a diagnostic lap. By doing this the surgeon might miss lots of endo and he definitely won't see it on the bowel.
I think you should change your surgeon asap any good surgeon uses the scan to see where the endo is and then bases there surgical procedure on that. A laparoscopy is not a tiny operation despite people calling it keyhole. Every op we have causes lots of internal scarring and can make endo worse. I have had two ops and have evrey severe endo but have been told the mess made inside me with loads of internal scarring means it is unsafe for me to have any further treatment.
The first op I had done was like this a diagnostic lap done without any scanning first and the endo was just burned off.The surgeon missed most of the endo as he didn't really know where it was and the improvement only lasted two years and I was back in theatre again.Where very bad stage 4 endo was diagnosed which had spread everywhere because it hadn't been treated effectively the first time.
PLease try to find a doctor who is an endo specialist not a general gynae and get proper treatment. Yu can get a really thorough scan done by an expert for about 400 pounds.Consider that because your surgeon sounds as if his ideas are twenty years out of date.Bowel endo is very hard to treat so you seriously needs someone who knows what they are doing. You would think all gynaes do but the sad reality is many of them know very little about endo. Good luck.
Hey! Thats really interesting actually, I had originally asked about a scan but he fobbed it off a year or so ago so I'll ask again and if it's still a firm no then I'll definitely look at going elsewhere! I'm hoping it'll be a yes because I cant afford to do a private one being self employed but if my luck changes and I make enough then I'll consider that route for sure.
I really appreciate you taking the time to give me all this info, that's really kind of you. X
I donāt have flare ups that seemed to triggered by pooing but my bowels are affected by the flare up
I was diagnosed with IBS at 13 (if thatās correct diagnosis I donāt know) but I have always had looser poo or diahorrra and you get your pattern of knowing whatās an IBS attack and what isnāt. I have no trigger foods for IBS (but find cutting out caffeine seems to be good) which makes life difficult if I was going to the office I wouldnāt eat breakfast as I wouldnāt want an attack in work.
I went through the same process with Endo trying cutting out different things, for me personally it didnāt impact (but everyone is different) my latest flare up started on a day all I ate was a salad
Coming back to the pooing point
Sometimes I have found when I get that everythingās on fire down below and I go and sit on the toilet (use to bring comfort in itself but not this most recent time) and if I pooed it did seemed to help, itās loose
I go really hot, with the sweat dripping off of me, my abdomen contracts and then my body really cold, in the heatwave Iām there in a fleece trying to warm up after an attack
Any food I eat after an attack always results in diahorrra and during this recent flare up which Iām on day 6 of (days 1&2 were in agony now Iām in severe) food I ate on day 3 and 4 just shot through within an hour the most severe diahorrea Iāve had in a long time where you feel youāve been scrapped out
Passing water and pooing as hurt this time, I had a contraction everytime as well
I know we are not exactly the same but please donāt feel alone with it all
Thats so interesting, I also have IBS and with these flares it feels completely different from my IBS attacks! I see so many similarities in what you're saying, especially with the sweating etc, I really appreciate you sharing it and making me feel a lot less alone, thank you x
Hi Arty, definitely agree these attacks are different and feel different to the IBS ones, which helped me push with the GP that what is going on down is two different things at different times. Usually I find with IBS, I get the bad cramps but when I go for a poo the cramps will then go, this Endo is different.
When I first start getting the Endo symptoms (aside from bad period pain) it seemed to start waking up everyday with a pain and this feeling like I physically had something sat in my abdomen/bowel, be it food or something else I donāt expect I will ever know what - I donāt suppose you had anything similar ? xx
Yes thats exactly it! When I had my recent one I woke up feeling like something was sat in my stomach and was this weird tight/heavy/bruised feeling but if it's IBS usually cramps that just want to eject everything and then im fine again, whereas with this it can sometimes be food but other times it's out of nowhere or following a day where I did too much
I have a symptom diary that I started this year so I'm hoping once I find someone ready to listen to me it'll help xx
I ve not been diagnosed with Endo, my diagnosis is large fibroids and IBS.
Reading through I have very similar symptoms I wake everyday with abdo pain, feel I need my bowels open. I have a mix of constipation and loose stools and trapped wind. I have back pain and nothing really seems to help ease the pain.
Am on day 11 of serve pain, bowel problems so my version of flare up.
Because I was on Zoladex and was all good then I know my bowel issues are connected to my womb issues as since stopped the Zoladex this has all happened.
My bleeding is so heavy again that my HB is too low that I have to go back on iron tablets. Itās a constant circle.
That sounds so tiring so I can see why you'd feel fed up! The mix of constipation and loose stools, trapped wind and back pain is something I experience so often as well
I'm so sorry to hear you're on day 11, I hope you get a flare free day really soon, it's horrible when it takes over for so long, sending lots of hugs x
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