Extremely painful bowel movement episodes

I have always suffered with painful periods and was put on the mini pill last year. This has completely stopped my periods but every now and again I have sever bowel pain. I used to get this on my first day of my period, every other month. I'm still getting this even though I am not having periods (however its only 3 or 4 times a year now) so I know what I experience is not diet related.

So I would get the normal amount on discomfort anyone would get when they are about to empty their bowels, but once I get to the toilet that changes. I go all weak and my pain comes and goes in waves. It feels like contractions that last a few seconds and then fade away, and it gets more painful each time. After the intense pain eases off soft stool would come out and the pain will build up again. By about the 6th wave of this, the pain will be unbearable and I will start sweating from every pore on my body and will become extremely nauseas and faint. Some times are worse then others, most months I experience mini versions, where It stop after 3 or 4 waves, and I would be okay. But every now and again I would have the extremely painful one I just described. Afterwards the pain will stop and I would be left feeling exhausted.

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  • Hi ChambeRay, I don't know if that is strictly Endo related, but I definitely know that feeling. I think this maybe why women are so often misdiagnosed as having IBS instead of Endo?

    From what I understand, which isn't much to be honest, if Endo nodules imbed themselves in the walls of the bowel or lower intestine, this can cause these sorts of pains, or at least contribute to them. The Endo cells swell as we go through our cycle, no matter where they are in the body. That swelling puts pressure on whatever body part they've attached themselves to, causing pain in random body parts.

    Personally, I've got an added complication as I've had my gall bladder out and have ha massive vowel issues ever since. That's part of the reason it took me so long to go to a doctor; I blamed all my pain on not having a gall bladder and never thought it could be related to my period.

    My experience is just like you described, although mine is almost daily, but not always as extreme. Some days are far worse than others. I get anywhere from 20 seconds to 5 minutes notice - the notice is the cramping starts. Then, when I go to the bathroom, as you said, it comes in waves, cramps that bring tears to my eyes and make me feel like I can't breathe, cramps that make period pains look easy. I sweat everywhere, but also seem to get really cold so I end up shivering while sweating. I also get really flushed through my face into my chest. (That can be a bit embarrassing at work as I can't hide the sudden rashy appearance of my skin.) After, I feel absolutely drained of energy, physically wiped. I have read somewhere why that is, but I can't remember exactly - something to do with our body releasing salts or something to try and stabilise the cramping muscles and that leaves one feeling fatigued? Don't quote me on that, but there is a justifiable medical reason why we feel so exhausted after one of those episodes.

    When this happens to me, it usually keeps up, off and on, for about four hours, then it stops. I pretty much have to be within immediate access to a bathroom for four hours from the first attack because I'll have to go again every half hour to 45 minutes. It's like clockwork. Usually, past the first attack, not much comes out of me, just whatever was left, but the pain and all keeps up through every wave.

    I don't have any answers for you, unfortunately, but I do know the feeling. You aren't alone in this. It happens to others too just the way you described it. Hang in there! ❤️

  • Thank you for your reply. If the mini pill has stopped my periods, can the endo cells still swell? Also is there anything you can suggest to help cope with the pain? I saw a homeopath a few years ago that gave me opium remedies but they had no effect on me.

  • Hi, I get a version of this, although not as severe as you describe. I know I have a large endometrioma on my rectum, which is the likely cause. Have you had a lap or MRI to identify where your endo is exactly?

  • Thank you for your reply. No I have not yet had a diagnosis. My doctor wants me to wait until my episodes are more frequent. Is this normal? I would have though the earlier it is caught, the better. No other investigations are happening at the moment but I'm seeing the doctor again on Thursday.

  • Hey there. I can completely relate to this feeling I suffered for about 4 years and my gosh it pain is indescribable! It makes me vomit at the same time and my body can't help but panic m. I found pushing my muscles even though you get that feeling actually made it worse. I instead grab a buscopan two Ibroprofen and immediately heat a wheat bag. I then lay on the bathroom floor with a cold towel over me and my wheatie just resting between my legs over my underwear. I find if I take deep breaths and don't push my muscle it can ease in about 30 minutes where I'm able to lay in bed and sleep for an hour. I have been caught out once as it happens and I just have to take the tablets not walk just sit down and use breathing techniques. I think it can definitely be connected to your endo and i would just say it's happening more regularly to your doc because it's a horrible feeling. I get about 2-4 a year now hopefully since my endo was removed it will help but I'll keep you updated. You're not alone in this. But yes it's hard/ can be embarrassing to try and explain to people.

    Xx

  • If it was me, I'd ask for investigation and wouldn't give up until they did it. Your symptoms sound awful. I suspect it needs to be a laparoscopy.

    Good luck.

  • I get that too: cramps announcing toilet time. It can get bad and I tend to breath in deeply and slowly. It makes me think of women giving birth in TV shows, when there is someone holding their hand saying 'Breathe! breathe!'. And that's all I can do, sometimes cramps go away.

    Another thing is, I squat over the toilet. I've read somewhere a long time ago that sitting on the toilet is not actually that good for bowel movement. Sometimes it makes a different, certainly post lap.

  • I had similar problems for many years. I always thought it was IBS. Since I had my endometriosis operation where some endometriosis lesions was removed from the bowel. The situation is much improved. I rarely get any attacks now. So it is really worth finding out whether you have endometriosis effecting your bowel.

  • Rectovaginal Endometriosis. I have a nodule on my colon, waiting for an appt to have it excised. Ask for MRI and or diagnostic lap. Good luck I know your pain. Anti inflammatory diet has helped me. Gluten free and low dairy and meat. X

  • Hi ChambeRay

    Yes, it definitely sounds like you've got rectovaginal endometriosis. I've had exactly the same experiences that you describe for 4 years now. Even passing wind has been extremely painful and I've had a lot of blood and mucus coming out every time I've had a bowel motion. I've suffered the same agonizing pains that you describe, that come and go just like contractions, sometimes I've spent the whole day doubled over and unable to walk properly...I also get a lot of gas building up and really painful bloating. It makes me feel really, really ill, like I'm suffering from a very bad virus, feverish, headachey, absolutely terrible...

    To begin with, when I first went to see my GP with these symptoms, I was sent to see a bowel specialist in 2014 (my GP thought I had bowel cancer). The bowel specialist conducted various tests, including a colonoscopy which was VERY VERY painful for me (I actually passed out during the procedure), and only ended up diagnosing constipation!!! Going to see this guy effectively held up my endometriosis diagnosis for 2 whole years while I continued to see him. Finally, after I'd read something about endometriosis from the internet, I went back to see my GP and suggested that possibly this was what I had, and could I see a gynaecologist (I first had endometriosis symptoms back in 2000 and every time I saw my GP I was fobbed off and told that period pain was normal and any abdominal pains were probably due to wind...yes, really). After a couple of hiccups along the way I had my first laparoscopy earlier this month which showed that the whole of the back of my cervix is stuck to my bowel and I've got a 3 cm nodule penetrating the bowel wall...Now it sounds like my only option from here is to have further surgery to deal with the damage.

    Please don't leave it too long to be seen..the longer you leave it, the more damaging it can be. When you see your GP, insist on a referral to see an expert at an Endometriosis Centre...

    I really do wish you the very best of luck on getting the treatment you need...it can take far too long to receive a proper diagnosis...but keep on pushing hard and don't give up...the lack of expertise surrounding this condition amongst the medical profession is woefully inadequate. It looks like if we don't look after ourselves, no-one else will.

    Sending hugs

  • Thank you for your reply. I'm not the sort of person that finds being firm with the doctor very easy! So when I saw her last week she told me that if it is endometriosis, then the pill is the treatment and swapped me to a different brand of the mini pill. So I will give it a go and return in a few months (and muster up some courage!!!) To see if I can actually get it diagnosed before it gets worse. I'm also a type 1 diabetic so I might actually be taken more seriously if I speak to my diabetes doctor at my clinic appointment.

  • Hi ChambeRay

    I know exactly how you feel about finding it hard to be firm with doctors!!! We're brought up to think that they know everything and we should be grateful that they're even giving us the time of day...but honestly given what I've gone through (YEARS of being told that there was nothing really the matter with me) and what SO many other women have gone through, I've come to the conclusion that doctors often get things wrong, especially when it comes to endometriosis. As I said, in the end I had to diagnose myself (just from what I'd read from the internet) and it was only then, when I told my GP 'I think I might have endometriosis' that I was FINALLY referred to a gynaecologist. Luckily for me, my local hospital has an Endometriosis Centre, but even then the gynaecologist I've been seeing has been quite poor in the way she's dealt with me (in fact I'm now going to ask to see the main consultant there instead...but that's another story!!!!).

    From what I've read, being on the pill doesn't necessarily help if you've got endometriosis on your bowel (I've read that even women who've had hysterectomies can still suffer the same horrible symptoms)... given the fact that you've suffered from very painful periods all your life, it really sounds to me like you've probably got rectovaginal endometriosis.

    Please don't be shy about asking to be referred to an endometriosis centre - you have every right to ask for this - you really shouldn't be suffering from these debilitating pains!!! Would it be possible to see a different GP? You're entitled to a second opinion and I really think you should get one. It's also a really good idea that you can talk to your diabetes doctor (so sorry you've got that condition too!!!). I don't want you to end up like me, suffering so many years of pain and being made to feel that I was being a nuisance...I only wish I'd realised MUCH sooner that I might have endometriosis...I'm so angry with myself that I didn't act sooner!!! And I'm even more angry that I was fobbed off for so many years by the medical profession...Anyway, I'm really hoping you can get somewhere with this...as I said, please don't give up until you find someone with some real expertise in diagnosing endometriosis...you owe it to yourself to live a life as free from pain as you possibly can. I'm convinced that the right help is out there...don't give up trying to find it and don't let your GP fob you off!!

    Sending lots of hugs....

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