Health Organization for Pudendal Education

so nervous i have an appt fri with a pelvic PT this friday!! .I do NOT have a diagnosis of PN or PNE ,but im about 95% sure this is what i have!!
im taking the advice of one member and going to pay attention as to what she recommends as far as therapy,but will she do any tests to diagnosis this? or will she send me to someone that will be able to officaly diagnosis me then back to her??

i have been looking on this website and found a dr here in my state (a few hrs away) but still here..wondering if i should just go to him first?? god ,im confused and TIRED of wasting money and being dissapointed with NO diagnosis .

Depends on how experienced your PT is with pudendal neuralgia. I was diagnosed by a PT when the docs had no clue what my diagnosis was. If it hadn't been for her I might still be in the dark. If you are pretty sure it's PN and you are able to travel to the PNE specialist you might want to go ahead and get an appointment especially if there is a long wait.

Also, it kind of depends on whether you want to try conservative therapies such as PT first or go straight for the PN blocks which is what you will probably get from the PNE specialist. (not sure who you are referring to so I can't say for sure) The reality is, nothing is going to give you a 100% guarantee on a diagnosis -- it's a matter of putting all of the puzzle pieces together and coming up with what looks like a picture of PNE after other things have been ruled out. Good luck. Hopefully someone else will give their 2 cents here too.

Violet

Hi Mom!

Violet M wrote:Depends on how experienced your PT is with pudendal neuralgia. I was diagnosed by a PT when the docs had no clue what my diagnosis was. If it hadn't been for her I might still be in the dark

Same for me, too. I took my PT's reports and sat at the computer one day looking up words I didn't understand. "Pudendal Neuralgia" was one that appeared frequently. My independent research led me to this site, which eventually led me to Dr. Mark Conway.
I'd like to clarify about PT's being able to diagnose. I'm not sure if this is true throughout the US, but PT's can NOT officially diagnose in MA. All they can do record dysfunction.
Her reports were sent to my PCP's, Uro-Gyns, Physiatrists, etc.... and were ignored. If you're looking for a true diagnosis, you'll have to get that from one of the PN Specialists.

momof3bigguys wrote:i have been looking on this website and found a dr here in my state (a few hrs away) but still here..wondering if i should just go to him first?? god ,im confused and TIRED of wasting money and being dissapointed with NO diagnosis .

I completely understand your exhaustion and frustration. As I mentioned above, the only way to get PN(E) confirmed/ruled out is to see one of the specialists. No one else can do it. I don't think your appointment tomorrow will be a waste. Part of most PN specialists protocol is PT (along with history, symptoms, blocks, med trials).
I wish you the best with your appointment, and hope you let us know how it went.
Kind regards,
Karyn

Mom, I didn't mean to say that the PT was able to give an official medical diagnosis but she is the one who figured out what I had and then the physicians were able to confirm it.

Best,

Violet

Hi all
I saw a list or maybe a site where there was a list of PN therapists on this site ....i didnt bookmark it, i cant believe it, can someone repost it?
im in so calif
Thanks

Hi Cory

This is the list on the Home Page (up top in small red lettering) on here http://www.pudendalhope.info/node/16

Rosemary

perfect that was it thanks so much!!!

Hello Mom,

My first diagnosis came from experienced PT. But you will have to have tests.

I would recommend:

- MRI of T10-Tailbone. Your disks can be herniated and squeeze nerve roots that later form PN.
- Experienced misalignment doctor who would look for pelvic and other misalignment. After that if you have it you have to find PT experienced in muscle energy pelvic adjustments and exercise programs to put you back together. Misalignment can stretch and distort nerves.
- Have knowledgeable chiropractor or doctor specializing in Graston technique check you for scar tissue. Scar tissue can distort nerve position as well.
- Have Potter (Tesla, 3T) MRI of pudendal nerve done and preferably including hips. Hips can have labral tears and other defects that mask for PN. You would have to find local office of go to NY to Dr. Hollis Potter.
- If Dr. Potter did not do your hips have MRI Arthrogram to rule out labral tear and other hip disorders.
- Check with CT scan or may be just good misalignment doctor for SI joint dysfunction
- Check with ultrasound and CT scan for femoral and inguinal hernia.
- Go to NH to Dr. Conway to perform EMG of pudendal nerve and have consultation with him.

May be others can add more or remove some steps but this is summary what I went through.

Good luck

Helen

P.S. Make sure your PT works on joints and bone position as well as internal trigger points. This is a mistake that I initially made.