Symptom Questions

[Violet M]

Md84, it all depends on the urologist. At the very least, they could probably rule out some things. PNE doesn't really belong to any specialty at this point; it seems to depend more on whether a physician has a particular interest in it. There are some neursurgeons, urologists, gynecologists, neurologists, plastic surgeons, ortho surgeons, sports docs, etc. who have become experts in PNE. If you've ruled out other problems, there comes a point when you may have to travel to one of the experts. Have you seen a physical therapist who specializes in pudendal neuralgia yet? That's who finally diagnosed me when the docs had no clue.

[md84]

I haven't been to a PT that specializes in PN yet. That's a good idea. I looked through the list of PT's on this site and I have found a few within an hour or two away. I guess that would be a reasonable starting point? How did they diagnose you? What tests did they do? I assume the PT's listed on this site are highly recommend?

So you recommend a PT before a random urologist?

Thanks!

[HerMajesty]

Depending on your insurance and the PT's office policy, you probably have to get a Physician referral for PT. So you are probably going to have to see some sort of Doctor 1st. In my experience rather than see a random Urologist or Neurologist, you are best off going to a pain clinic. Get a personal referral if you know anyone who goes to a pain clinic, or look at phone book ads to see who lists pelvic pain as one of their areas of focus, call the pain clinics on your insurance plan to ask if they have experience with pelvic pain, or call the closest pelvic floor PT to see what pain clinics they get referrals from. Pain clinic Docs, who are generally Neurologists or Interventional Anesthesiologists, tend to be more informed in this field and routinely perform nerve blocks and other procedures pelvic pain patients sometimes need. So if you can go to a pain clinic and get a PT referral from there, that's a good plan.
I am not one of the people who maintains this website so I don't know for sure, but I do not believe the PT's listed are "highly recommended", so much as they are a collection of all PT's who specialize in pelvic pain. It is not a common field, for example in my city there is only one pelvic floor PT. There are no ratings or recommendations so your best bet to find out more if you have some choices, is to post to find out the experiences of other people in your region, with the PT's in question. If you can't get an advance sense of who is best, see the closest one. Most PT's have you come back for multiple visits so if you pick one 2 hours away you will have a 4 hour commute maybe once or twice a week. That's certainly not good for the pudendal nerve.

[mom]

So sorry to hear of your symptoms. My daughter has had the EXACT same itch. No pain just profuse itch. Hers started at age 4 and she is now 8. We flew out to see Dr. Hibner and had a comfirmed diagnosis of PN.
It seems the only that lessen her symptoms are NO sitting and def. NO bike riding.
Strange this affliction.....it affects everyone so diffirently.
Good luck with your journey
Mom

[Violet M]

I guess that would be a reasonable starting point? How did they diagnose you? What tests did they do? I assume the PT's listed on this site are highly recommend?

So you recommend a PT before a random urologist?

The PT's listed on the site are not endorsed by the HOPE organization but in order to be listed they have to meet certain criteria. They have to have some special training in the treatment of pudendal neuralgia. Many of them have taken Stephanie Prendergast's seminar or the Herman and Wallace course or they have developed their own protocol for treatment of PN (like Amy Stein or Rhonda Kotarinos).

My PT diagnosed me by evaluating the pelvic floor muscles and the nerve at the ischial spine and alcock's canal. She also checked for pelvic alignment and SI joint dysfunction. She knew it was pudendal neuralgia right away whereas the docs, including urogynecologist, did not have a clue what the problem was.

I'm not suggesting you shouldn't see a physician, but a random urologist may have very little knowledge of pudendal neuralgia. Some do, some don't. Still it's important for the urologist to rule out any other serious conditions that could be the cause of our problem. So it wouldn't hurt to see both the PT and the physician.