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Neuromuscular Diseases Message Board


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[QUOTE=CMan2;5303290]Hello! This is my first post, and I'm not sure where to put it, but this was the closest category I could find.

I'm not going to pull any details in this post, mainly because every doctor I've been to doesn't seem to know what's going on, and without the details, the symptoms won't make a whole lot of sense. This may not be the most well-worded post you've ever read, and I apologize in advance. When I'm having a flare-up, it can really mess with my head.

For probably three or four years, I've had an internal rectal prolapse, or at least it's seemed so. It didn't hurt or anything. Sometimes I had some constipation, but nothing major. But once in a while, I could feel the mass of tissue dropping down(never coming out), and retracting some time later.

Cut to late December of 2012. This part is extremely embarrassing for me, but it's a crucial detail, so I can't leave it out. I was masturbating that night, and just as I finished, I had the sudden sensation that someone had grabbed the muscle between my scrotum and anus, and my rectum, and twisted them with a pair of vise grips.

After a while, the muscle in my scrotum still would not let go, and the pain level was beyond 10, somewhere in the Oh My God area of the chart. I couldn't urinate. My rectum felt like one giant nerve, and it felt as though it was jittering up and down with every step I took. I've had a razor blade jammed up into my hand, and broken bones, and this pain was much worse than any of them.

It took me over two minutes just to get down the hall from my bathroom to my bedroom. My abdomen, especially my lower abdomen, felt as though my insides had broken loose from their moorings and were grating against one another. Everything else was basically numb. And by everything else, I mean my entire body, except for the areas of searing pain in my nethers, was...muted I guess the best term

During my flare-ups, my gut basically shuts down. My rectum will literally slam shut, and even gas rarely gets out. During the first one, I didn't have a proper bowel movement for about three weeks. Then over the course of a few months, it slowly got back to normal. Though, anything more than the most basic physical activity ran the risk of shutting me down for a few days.

Every doctor I went to dismissed my rectal issue out of hand, and insisted the problem must be in my back. Even the doctor that gave me the pudendal nerve blocks thinks it's in my back.

An MRI did show some slight bulge on the L4 and L5, but it makes no sense whatsoever. It doesn't explain Masturbation -> Instant Torturous Agony out of nowhere."


We are in a similar situation. But, I have had this for just over ten years. Similarities : pelvic/rectal lock-up, general wrongness (I totally understand that), gut shuts down, entire body 'mute', twisting/pulling feeling, messing with my head, pretty much everything is messed up and feels like its centrally problematic with the nerves and muscles in the pelvis with flare-ups or whatever for no reason or because of any activity. I get the masturbation thing too, no need to be embarrassed.

I've been hardcore trying to get this resolved. Canada is useless because unless your born or dying, anything in between is dismissed. "Drink more water, do yoga, take ssri, etc etc etc". So I've been to Minnesota and Baltimore several times and going back again. I've done years of research and have had tonnes of procedures and meds. Botox in the rectum was the most recent.

I'm replying to you because we are in a similar situation. You found a disc bulge at L5-L6. I have one at L1-L2 and t11-t12. It actually makes sense and here's how it links to the masturbation thing: google "l4-l5 innervation" and also look at images. The nerves from the spine link to the abdomen with some links to intra-pelvic things. When there's compression on the nerve root on spine, other nerves can cross-talk or the nerve compression isn't transmitting signals properly. It's a 2 way signal too, so things get messed up. Additionally, when the rectum and glutes and deep abs are tense like ours, it smashes other nerves and those messages get transmitted= temperature sensitivity , brain issues, legs, neck, hands, feet, wrongness.
Don't dismiss the back thing, but ignore all the advice you may get about diets, exercise , relaxing, yoga, therapy etc. Those things are fine for general health ailments and work for coping....but all you will do is cope.
Relax you rectum and butt in the meantime and avoid exciting or stressful things. I get the food nibbling and lack of appetite too, so don't eat too much veg or gassy/fatty things when you flare up.
How old are you by the way?
Cheers





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