Health Organization for Pudendal Education

Hi guys,
I guess it goes without saying that I could use some help and advice. Over the last 3 months I've had lots of frightening symptoms drop on me out of the blue. My doc just diagnosed me with PNE and man this is a real stinker.
Uff! Here goes. About four months ago I bought a new truck and shortly thereafter started noticing weird zinging sensations at the tip of my penis and in my perineum as I drove. About a week later I noticed the underside of my penis was less sensative, then one day after intercourse the underside went completely numb. At around this same time I lost the feeling in my orgasms--Yikes! I also had trouble controlling my urine flow.I tried not to sit in my truck and over a few months it gradually got better. Then 2 and a half weeks ago I made the worst mistake ever and went for an hourlong car ride! That was it. First the top of my penis went totally numb. I stopped sitting completely. After a week a small amount of sensation returned but that has gradually faded to next to nothing. In the meantime my scrotum, glans, shaft and even my lower abdomen have lost most pleasurable sensations and just register pressure and varying degrees of temperature.
Believe me when I say that I am very, very thankful that I am not in intense pain.
That said, this is ruining my sex life. I've got gradually worsening ED, fading sensation and not a lot of empotional strength left in the reserves.
I desperately want to recover from this. I have seen my GP a urologist and a neuro but no PNE specialist. I start PT on Monday. Is there any hope of recovery?
Please help, I want to make the best decisions I can.
Thank you.
MM

MM,
When sitting puts you over the edge, PNE is a likely suspect. Numbness and neuropathic pain are two sides of the same coin. You're ok for years and then you're not. You can always try PT and see what happens. If you don't see improvement, a trip to NYC for a 3T MRI with Dr. Hollis Potter can at least tell you the lay of the land so you can decide on your next move. Most insurance pays for her with a referral scrip and the airfare and hotel are well worth the investment. My symptoms and her diagnostic evaluation matched perfectly. You often need to travel to find the few doctors who have experience with this condition. You can find doctor info and discusssion of same here on the forum. What did the doctor who diagnosed you with PNE reccommend if PT proved unsuccessfull ? Has the therapist you're seeing treated other patients with pelvic pain ?

Don

I've been lucky, my uro and neuro were totally clueless, but my GP is a good doctor and spent a good deal of time researching PNE and calling around for PTs and doctors with PNE experience. We couldn't find any neuros in my area (NH and VT) but this PT is supposed to have some experience. Is there anyone on the forum with similar symptoms to mine--the genital numbness? I have also been feeling like I have a continuous stomach cramp for days on end.
Thanks for the response.
Cheers,
MM

MM, I haven't experienced genital numbness myself but over the course of seven years I've read of this complaint from PNE patients on numerous occasions -- including guys.

Not sure of the exact location of your stomach cramp feeling but you might want to have your PT check out the psoas muscle. Just one piece of advice as you start PT -- if it's causing you a lot of discomfort it might not be right for you. Also, I think you should know fairly soon whether it's likely to be helpful. Good luck.

I wonder if Dr. Aszmann's surgery (in austria) would help you out. AliPasha on the forum had it. It removed many of the penile symptoms for him.

Is your truck old or new?

Yes your symptoms are quite normal... avoid sitting at all costs to stabilize... to keep it from worsening.

Have you been checked for an occult inguinal hernia?

Guys, thanks so much for the input--it really helps me keep my head on straight. My PT cancelled on me today, but I'm rescheduled for Thur. Good to know Dr Aszmann was able to help someone here on the forum. I'll try to link up with AliPasha to get more info!
Well the stomach cramp was ... drumroll .. constipation! This may sound crazy, but I'm 36 and that's never happened to me. Ugh! Prunes.
One thing--I'm trying to figure out whether inflammation may play a role in this as I didn't have any specific pelvic injury to precipitate this, just the postural stuff in the truck--which is a '91 F150 BTW. Although, now that I think of it, I was having more intercourse than usual with a new partner leading up to this--lord, is that ever a trigger for inflammation in the region? I've had weird inflammation issues in the past with carpal tunnel. I'm going on a round of ibuprofen (sp) for the next few days leading up to my PT.Thanks again everybody. it's nice to not feel alone in this.
Cheers!
MM

When you say you had no specific pelvic injury: You did not by any chance celebrate the new truck by bumping around someplace off-road, did you? Just a thought. Otherwise in my experience the F 150, or anything else without bucket seats, should be BETTER for you posturally. My husband has an F150 and I have a sedan, the truck with the straight seats is definitely less destructive on my pudendal nerve than the bucket seats.
The only other source of injury I can think of that one could get as a new truck owner, would be from the twisting of the body from getting in and out of it. If you get into the truck by leading with your right leg and using it to pull the rest of you body inside, and / or get out of it by dropping your left leg down onto the pavement then twisting your body to follow the left leg out of the car, these are poor body mechanics habits that you might have been able to get away with until now, if your prior vehicle was lower to the ground. The safest way to get in and out of any vehicle is unfortunately not the manliest looking move in the world. You should get out by keeping your legs close together and "walk" them to swivel until you are sitting sideways in the seat with your legs hanging out the door, then have both feet hit the pavement at once. Reverse the process to get in: Stand with your butt facing the seat, sit down on it sideways so that both legs are hnging out the door, then slowly swivel to face the steering wheel keeping both legs close together.
Those are the 2 ways I could possibly correlate a new truck with pudendal onset: taking a major jolt while off-roading, or twisting the pelvis getting in and out of the truck. Otherwise the truck could be a coincidence, not sure either way about male onset correlating with increased sexual activity.

MM,
My pain is exacerbated by ejaculation and actually first came on when I first met my girlfriend during a period of constant sexual activity. Something about the muscle contractions put the big squeeze on the ilioinguinal and genitofemoral nerve (as I recently found out from Dr. Potter). Pretty depressing correlation but there it is. I take colace (stool softener) for constipation.

Don

Quick update.
Well, PT and daily stretching combined with weekly massage seems to be doing the trick. I'm not 100% yet but I've got most sensation and functionality restored and I'm on the road to recovery. If anyone needs a PT in NH, the folks at BE Fit in Hanover have been great for me. Caitlin Woodward (I'll double check the spelling on her name) is the pelvic floor specialist and she's been fantastic.
Cheers,
MM

Great news !