Health Organization for Pudendal Education

Hello everyone newbie here problems started suddenly in April of 2012 sudden frequent urinating burning penis that was literarily empty sorry to much info. Problems persisted with zero help from over 15 doctors only answer was "I think it's prostatitis" . Several months of agony brought me here, I have had spinal MRI potter MRI which revealed varices near alcocks canal with no signs of entrapment. I have been doing pelvic floor pt for 2 months no real help. Not sure what to do next .

Hi Boxer,
They can be rather rubbish sometimes can't they, the medical profession that is..... but once you do get some one who understands that pelvic nerve problems do exist it makes like so much easier. So that is what I would recommend, take a look at the home pages and see who is the nearest PN aware Dr near you and make an appointment.
A diagnosis is fairly easy for any clinician who is PN aware, although some Dr's do have higher expectations from patient reaction to some tests, from accounts of reports here.
Have you been prescribed any medication so far? and if so ha it had any good effect?
There is a ton of good info on the home pages btw, always worth a look.
Was there any precipitating event (fall, muscle spasms /weight lifting) that caused your problems at all?
Welcome to HOPE . You sound as if you have been 'round the houses' with regard to the medical profession but then that is unfortunately par for the course with regard to pelvic neuropathies.
take care,
Helen

Welcome to the family, Boxer. Glad you found us but wish you didn't have to be here. Any idea what caused this for you -- like an accident, exercise, etc. or did it just show up out of the blue? I guess Helen already asked that but history is always really important in trying to determine what to do.

It's kind of a personal decision on what to try next. There are various conservative therapies like medications and lifestyle changes if your pain levels are not too high and you don't want to risk more invasive things. Some people have tried electroshock wave therapy from Dr. Kirk Andrew in Canada with good success but not everyone has had a positive experience there. You can do a search on konedog's most recent posts for a success story.

Dr. Potter's MRI's are not proven to be 100% accurate. Some problems related to pudendal neuralgia such as sacroiliac joint dysfunction, pelvic misalignment, or strained ligaments might not show up on an MRI. Also, I don't know if she checked you for related problems such as labral tears or tarlov cysts.

If you are pretty sure pudendal neuralgia is your problem and you are in serious pain there is the option of pudendal nerve blocks and if a series of nerve blocks doesn't help permanently to go for surgery but most people consider that a last resort option. It really is a very tough decision trying to figure out what to do next. You have a lot of options and hopefully you will be able to find some answers here that will help you figure out what you want to do.

Violet

Welcome Boxer,
As Helen said there is a ton of info on the homepage. An idea you may be able to try until you get diagnosed and find treatment may be to check out the symptom list, print it and check off your symptoms. Take that and the letter to medical professionals found in the FAQs as well as the medication list to your doctor and see if you can get started on something to ease the pain. The medicines for nerve pain need to be slowly increased to manage the side effects and you need to get to a fairly high dose sometimes before they kick in. Otherwise follow the leads fron Helen and Violet and good luck.
Janet