Embarrassing question about going to the toilet.

[LoveThyGuineaPig]

I apologise in advance for the TMI in this post.

For years now, when I’m due on my period, I almost always get intense pain in my lower left abdomen when I need to have a bowel movement.

When I’m going to the toilet, this can occasionally feel so bad that I go light headed and feel faint. It also can cause me to simply be unable to move without feeling that I’m going to pass out or vomit.

For the last couple of years, I’ve started to experience this same pain when I ovulate. Sometimes I even feel like I need to go to the toilet when I don’t.

Another thing I’ve noticed about this pain is that when I go to wipe, any pressure down there causes the pain to be triggered in the exact same place (right under the top of my hip but feeling as though it’s deep inside).

I’ve been told that it’s quite common for bowel movements to be painful with endo, but I just wanted to see whether anyone else experiences this? Particularly the pain when wiping.

The pain used to go after I’d been to the toilet but more recently, it remains, although less intense.

[Dmountains]

Hi, I have the same. In my case it looks like it is due to bowel endometriosis, adhesion more specifically. I do not have endometrial lessions on the bowel but the fact that colon's wall is attached to one of my ovaries it is enough to cause severe pain during bowel movement. MRI scan was the key to find out.

[Bondi64]

I also have alot of bowel pain, half the reason i went to get answers with a specialist and an mri as ‘it wasn’t right’ and the level of pain was horrific

It always felt for me when on my period and going to the toilet like someone was stabbing my left side (hurts more that side as its where large intestine ends and bowels empty)

Being on on your period increases the amount of inflammation you have , which in turn increases the amount of pain- fully recommend reading ‘ heal endo’ book, explained alot of things.

Ive been lucky to have controlled alot of my pain with the pill , but a bi-product of endo is ibs, so most of the pain i get is abdomen, gut and toilet related , try and manage it through diet, exercise etc but by no means perfect

[Hannah818]

Hi have you had a pelvic MRI? It sounds similar to the pain I have , my MRI showed bowel/rectum attached to kissing ovaries , stage 4 endo with 'most likely lots of adhesions and scarring ' gynae words

[Peptink in reply to Hannah818]

That sounds very painful. What is the prognosis? Are they planning to do any surgery? I wish you well and hope that you can find some relief.

[Hannah818 in reply to Peptink]

Thank you peptink, yes I'm on surgery waiting list , been waiting a while , hoping to get a letter soon , hope you're OK too

[Kinder_Cat]

Hello,This sounds so like myself 2 years ago. I did have an MRI and it didn't spot the issues but I got really lucky with a great gastro Dr who did a colonoscopy and could spot my bowel was being partially twisted and crushed by endometriosis adhesions to it. I'm not saying this is definitely what you had but to echo others it definitely sounds like bowel adhesion and I would really encourage you to pursue it if possible.

If it does turn out to be this it took a bowel resection to correct it and for the first time in years I was able to have a period that hurt, but didn't floor me.

That said I never got pain wiping, though my pelvis did (and I am afraid still does) get what I can only describe as a vice like clamp pain during my period due to endometriosis.

Not sure this is any help but maybe just validation that it could be more than just pain from endometriosis?

Whatever you do I really hope you get a solution as it truly is a horrid condition.

[1Poppy1234]

I am just like this although the pain goes right across the bottom of my stomach, I used to think it was period/ovulation pain but I'm four months post hysterectomy and it's just started again and so much worse. The only reprieve I got was oramorph. I feel for you it's dehabilitating and awful.

[BloomingMarvellous]

Endo lesions are very frequently, but obviously not exclusively, found on the left side of the lower abdomen. It's quite often an originating site for it to develop according to a couple of studies. So you may well be right. It's where the descending colon is placed to exit the body so the two areas are nestled up close. It means it's easy for inflammation in either area to impinge on each other even where there's no disease sharing going on. Clearly it needs properly investigating to ascertain why you have that pain and problem. It's not normal and should be given due diagnostic weight.

There's a study on EndoNews this last week on deregulation of the IL23-TH-17 axis being a significant factor in Endo. This axis is involved in auto immune disorders such as some bowel problems and rheumatism etc. So the companion problems with the bowel even when the lesions haven't seemingly spread to the bowel tissue, or continue when surgery has supposedly removed all seem at least understandable at last at some level. How quickly that gets accepted or properly taken further in studies and care who knows ! As this pathway is seen to be highly pro inflammatory I think we all can appreciate this finding has legs and look to whether we might find some ways to put in some focussed management here. url1211.endofound.org/ls/cl...

On the plus side of that crumb of information earlier studies have shown that the TH-17 levels of that axis raises more inflammation and is down regulated with the use of CBD oil. It seems that using some high quality CBD might reduce the inflammation and pain ! Not sure whether it's Endo cannabiniods across the board or not, ie Levagen, but the benefits might be worth a decent trial as part of a managed self care plan alongside the medical ones ? Obviously, we should ensure there's no contraindications personally, as that won't be a positive, but for one am going to be slapping on some patches to see if that gets me some additional anti inflammatory help.

(Kozela E, Juknat A, Kaushansky N, Rimmerman N, Ben-Nun A, Vogel Z. Cannabinoids decrease the th17 inflammatory autoimmune phenotype. J Neuroimmune Pharmacol. 2013 Dec;8(5):1265-76. doi: 10.1007/s11481-013-9493-1. Epub 2013 Jul 28. PMID: 23892791.)