Health Organization for Pudendal Education

lucky wrote:Just wish there were an objective, definitive way of finding out whether or not I'm getting better.

How are you feeling? No one can answer that better than you can.

Best,
Karyn

Hey guys, I know it's been a while, but I wanted to give you an update on my state:


So, after going to physical therapy 1-2 a week for the past 2 1/2 months, I can't say I've noticed much improvement. Aside from the disappearance of the 'golfball feeling', I still experience many of the same symptoms; here's a recap:

- Urgency: feeling of having to urinate every 30 min. Once I reach toilet, only about 2oz of urine come out.....m
- My stream is still very weak. The urine comes out in trickles.
- Difficulty with bowel movement: I strain and push, only to have tiny amounts come out.
- Wake up 2-3 times a night to pee
- After sitting for about 30 min, my glutes and hamstrings begin to burn/get numb
- Worst of all, the head of my penis is still quite numb and my libido is has reached rock bottom.


My PT, who's considered an expert in the field, went from being certain that I just had Pelvic Floor Dysfunction, to suggesting I get some urodynamics done. She is also coming around to the idea that the pudendal nerve might be playing a role in all of this.


I've done everything that's been asked of me; the stretching, PT, abstention from alcohol and spicy foods, etc..all to no avail.

If there is anything positive that I can say, it is that I don't experience 'pain' per se, but rather discomfort and annoyance...mostly from having to worry about peeing and being near a restroom at all times.

I'd also like to add that I feel best during the period in which I was on valiums....so there's that. Once I got off them, it was right back to hell on earth.

My PT says I have trigger points on my front side. Not sure what that means, but I guess we'll see what my next PT says.

Don't know where to turn to next, nor what to ask from my next PT.


Any suggestions??

Lucky, I think it's a good sign that you are at least seeing a bit of improvement with the golfball feeling gone.

You might not get the same answer from any 2 people on the forum and maybe not even from any 2 PN specialists or PT's on what to do next so maybe the best suggestion would be to make up a list of all of your options with pros and cons listed, and then follow your instincts. For me, it was pretty clear that I wasn't going to get better with PT but since you have seen some improvement and if it's not causing flare-ups, maybe that's not so clear in your case. What does your PT recommend as far as continuing with PT?

Valium is a muscle relaxant so it could be helping to relax the pelvic floor. It also facilitates the action of GABA in the central nervous system and is an anticonvulsant so it could be helping you in more than one way.

Violet