37 Male with pelvic numbness when sitting and standing.

[Sleepyinlaw]

I was diagnosed with pudendal neuralgia two years ago. It started suddenly after sitting on a metal bench. I was at a basketball game, and stood up to find my penis was completely numb. It came back relatively quickly after running to the bathroom, but ever since then I’ve had between 50-80% of the feeling in my penis. Sitting triggers the worst of it, but somewhere along the way standing for extended periods was producing the same effect.
The last few weeks things have gotten much worse. My bowels seem effected, almost like a BM triggers numbness. The urge to urinate has changed as well. Hard to explain, but it’s like the urge is less around the neck of my bladder and more of a full feeling. I’m losing muscle tone in my pelvic floor. These symptoms have been coming and going, but I’m worried they’re just one step away from becoming permanent. On top of this, I’m losing my balance. It feel like there’s an issue in my SI joints maybe.
I went to the ER a few weeks ago and had a full work up. MRI didn’t show anything unusual. CE was ruled out. No one there had heard of PN. I saw my neurologist again this week. The day of my appointment I felt like I was sitting on a knife. This went on for a few days. She put me on Cymbalta and ordered PT. So far the Cymbalta has helped tremendously with pain, but it has its own side effects and it hasn’t helped with numbness. I still get very uncomfortable when sitting or standing. My pelvis goes numb, I lose some balance and I just have to lie down. I’ve also noticed my toes have been “buzzing”.
Could this be sciatic nerve? Should I get a second opinion on my mri? Should I see a specialist? Is pelvic floor PT the best place to start?
Losing my mind,
S
Texas

[stephanies]

Hi,

I am sorry you have had worsening in the last few weeks. I do think another opinion on your MRI is a good idea. Did the imaging go all the way to the tailbone? Also, some do well with pelvic PT.

Stephanies

[Sleepyinlaw]

I just made an appointment with Texas Neurology in Dallas.
Anyone heard anything about this group?

[stephanies]

Neurologists typically don’t deal with or evaluate PN. Have you tried a urologist? That may be a better place to start. The doctor can likely refer you to a pelvic PT.

Stephanies

[JD47]

Sorry to here that your problem is worse. I was diagnosed with Levator ani Syndrome 27 years ago. Levator Spasms are spasms of the rectal muscles. Valium and PT gave me a small amount of relief. (Very small) A little relief is better than no relief.