1st Month with PNE

[tyro]

I first noticed testicular pain on a bike ride about a month ago. The dr. said I had epidymitis, which was a misdiagnosis. The pain continued to get worse and have an intense burning pain in the perineum upon sitting for any length of time. I have some cushions that make sitting bearable, but standing is the best solution. There are times when even laying down is painful. My doc diagnosed me with a "bruised pudendal nerve" and said i would be better in 6 months.

I have not been getting any better and, if anything, the symptoms have been getting worse. Things escalate as the day progresses, but sometimes they are bad all day. I mainly have stinging/burning in the perineum.

While my dr. has referred me to a physiotrist, I am considering a workup and treatment by Dr. Ken Renney in Houston. My local dr. just does not have any experience to deal with PNE. She is doing her best, but thinks that time will heal it.

Also, is there any advantage to treating this as soon as possible? Does the nerve get more trapped through time?

I sincerely appreciate any info or advice.

[nyt]

You might want to try a pelvic floor physical therapist to see if that helps. Many PNE dr.'s like you to explore the PT route first. Dr. Potter in NYC is now working with other radiologist with her MRI protocol. Maybe your dr. could hook you up with a radiologist that would be willing to work with Dr. Potter so you can get an MRI of the pudendal nerve in Seattle instead of travelling to NYC to get an MRI. There is some controversy about the accuracy of Dr. Potter's MRI but for now it is the most progress it seems anyone has made on the MRI front. Many on this forum can speak to their experience with the Houston team. There is alot of information on this site about the different surgical approaches which is something you might want to read about. There is alot of controversy among dr.'s and here on this forum on the role of the sacrotuberous and sacrospinous ligament in pelvic sability since depending on the approach one or both are severed. Some dr.'s repair the ST ligament others do not. The importance of the repair of the ST ligament is something you must decide for yourself and will guide you in the direction for which physician to go to. Good luck to you and prayers are sent your way.

[tyro]

Thanks for the info nyt. I can get an MRI done locally unless it needs to be some special kind of MRI. I know that is one of the prerequisites for many of the doctors. The main thing is I want to be proactive. The PT I am doing now seems to have no effect on the symptoms. I do feel an intense tightness in my pelvic floor at times, but even when the pelvic floor is relaxed, sitting is terribly painful.

[konedog4]

Dear Tyro,

I have had PN issues for one year now. I recently wrote Dr. Renney, and he sent me back my original letter and scribbled some nearly indecipherable words. I was not helped at all by him. I hope you have better luck than I. I wrote him a very professional letter asking about his experience and how he would advise me in terms of surgery. His lack of professional response was extremely disheartening. If this is how he treats a prospective surgical patient, I don't know that I want to under his care. These are my blunt, but honest reactions to his response.

Please share your results with us. I hope you get a better response than I did.

Wishing you healing and blessing from God,

JIm k.