Hi everyone.

Im not sure this is the right site for me but i've pretty much nowhere else to go at this point as I've been to Pelvic pain sites, pudendal nerve sites etc. I basically suffer from a host of urological/pelvic problems but most of them are manageable and I could lead a normal life with them. But one symptom I cannot deal with anymore is a severe tingling in my scrotum. It started about 13 years ago and was accompanied by a bulge in my pelvic floor (area between rectum and testicles). I also sometimes get a numbness in the left testicle but that is pretty rare. And occaisionally I can feel my penis moving. Of course a mans penis moves countless times throughout the day but you're not supposed to feel it. But with me it moves more frequently than is natural and almost feels like a foreign object is moving it. I assumed and still assume that its an injury and that the bulge may be a hernia of sorts even though I can't find any info about hernias in that region. I've been to a host of urologists over the years. Most of them did very little until one recently put me on Lyrica which did all but erase the tingling. I took myself off of the Lyrica because I thought it was a series of stretches and exercises that was helping me. I was wrong and am now back on the Lyrica and am waiting for it to kick in.

As I mentioned, I've had this horrible sensation for 13 years with a mysterious 3 year hiatus at one point. But it came back last fall and it makes life so difficult. If i equated it to pain I would put it at a 6 or 7 out of 10. I actually just saw a Neurologist in Boston yesterday but they said its not neurological in nature. I find that hard to believe and was just curious if anybody else has these issues. I certainly hope not as I wouldn't wish this condition on anybody but I would be eager to hear from anybody else with a similar problem . I would be so greatful for any help.

Thanks.

--I absoultely think this is compressively neurological in nature.

I myself have a long neurological history that started with an acute onset body-wide small-fiber neuropathy. While that has resolved and faded greatly in time (it appears to have been a monophasic event), regenerating/recovering nerves tend to grow in pathways different from the original ones, fighting through tissue and becoming very prone to compressive effects. I get compressive nerve tinglings/shoots/shocks in all areas of my body--they crop up, hang around a while, fade or disappear suddenly, reappear. And one of my chronic areas is in my pudendal nerve area, to the point where I get a tingling/vibrational shock through the Alcock's canal area (where the nerve follows the curve of one's lower butt) into the right side of my penis in certain positions.

Pudendal nerve compression can affect any part of the ****/genital area with widely varying symptoms. It is likely underdiagnosed, especially in men. And, as I'm sure you're aware if you've looked at the pudendal sites, it takes specialized testing to narrow down and the therapeutic options are also very specialized.

It may well be that you need to be examined and tested by a real specialist in this area (some are neurologists, some physiatrists, etc.).

I'm currently going through a bout of it right now--mine seems to also be set off by walking. A pelvic twist and a left leg 2/3 inch shorter than the right leg may be malpositioning me and contributing. I also have MRI evidence of varicose veins along the right S2 (sacral) nerve root, which may be swollen enough to push on that branch. The pudendal nerve arises from branches of the S2/S3/S4 nerve roots (and can be compressed right at those levels--it's too bad too many orthopedists don't think the sacrum ever moves or twists), traverses past some tough ligaments that can compress the nerve if swollen or too close, goes into the perineal area through Alcock's canal, where it can also be compressed by the ischial tuberosities (the "sit bones"), and then branches go off to the ****, rear of scrotum, and the dorsal nerve of the penis (there have even been compressive cases in which the front of the pelvis rubs against the penile branch, or in which an enlarged prostate compresses it).

You need to examine/document the extent of symptoms, in what positions they are reduced/exacerbated, etc., to give a specialist a hint of where this might be coming from. But given your symptoms and your response to Lyrica, I think that neurologist simply doesn't know about this (or is being lazy).

Thanks for your response. I have documented it pretty well over the years and always give my list to the so called experts. Sometimes I feel like the extent of my symptoms is almost too much for the doctors and it scares them away. I told the nuerologists last week that the only time i get tingling without fail, even when the symptoms are dormant, is when I yawn. This seemed to completely confuse her when in reality that should have been a hint as to whats going on.

So have you been properly diagnosed and recieved any relief?

Its funny that you mentioned tingling in your whole body. While its my testicles that recieves the most frequent and severe tingling, this past week I have been getting tingling in my back, arms, neck and stomach. Some days its been really bad. I don't think its a side effect of the Lyrica since I've had these symptoms (albeit sligthly) prior to starting the Lyrica.

Life is pretty difficult at this point as I seem to suffer effects of this malady most hours during the day.

Thanks again for any info you have.