Health Organization for Pudendal Education

I tried PT for three months. This was the internal trigger point type with some exercises i did at home. I went once or twice a week. For me this did not work. I think three months is long enough. Sometimes i imagined it was working, but I had to imagine very hard. Every session was of course invasive and very painful and caused more pain for 1-2 days after. I am still doing the at-home exercises. So, my question: has anyone really benefited from the whole internal trigger point ordeal?

Before I got this awful PN I was a masters swimmer. I possibly did the breast stroke too much, according to one Doc. So now after a 15 month hiatus, feeling sorry for myself and being depressed, i am back in the pool doing moderate freestyle distance, 1200-1400 yards. It is very humbling coming down from 3500 yards at a much quicker pace with multiple strokes. This whole PN thing is humbling. When i am in the pool flat on my stomach doing the freestyle it fells better. It may be mental or physical but i am going to continue on that path.

I have had one nerve block at Hopkins 6 weeks ago and will try another next week. I felt no pain during that procedure. It was no panacea but it may have helped a small bit. The also did the hi-rez MRI there that showed "nonspecific stranding along one are of the pudendal nerve.No smoking gun!

So here are personal experience grades for my 15 months with PN:

All the urologists: F (or every mis-diagnosis from prostatitis to obstructive bladder, to BPH)
Fairfax IR: B+ (6 months ago venogram showed deep pelvic varicoceles. Coil embolization procedure did not work. A noble try!)
Johns Hopkins IR: B+ (have not cured me but listen and give you straight talk)
Dr Marvel: D+ (wildly expensive and offered nothing but a description of my problem and Cymbalta and Valium Suppositories )
PT: C (nice folks that have empathy and offer hope, but it did not work)

Best to all............Davemon

Thanks. Did the SIJ work help you personally?

Dave, I agree with you that PN is humbling. I'm sorry you've had to face the fact that you can't swim like you used to.

I tried PT for awhile too but it wasn't working. Dr. Wise told one of my friends that if it's going to work you will know it within 6-12 sessions so I think if you aren't seeing any improvement after 3 months that your instincts are probably right that it's not going to be the magic answer for you. It's tough to have to go through so many trial and error experiences with this disease but keep fighting -- you will eventually find the answers.

Violet