How do you get diagnosed with PNE?

[beverley]

HI: I am new to this site and am pretty sure that i have PNE. I am going to a vulvar pain specialist, but I'm not sure she knows what she is doing. I have requested a Nerve block but she was reluctant to give one. She doesn't follow the protocol listed on this site and only does a hand-guided intra-vaginal block. Is it worth it? I have done physical therapy and had some relief of symptoms, it has been a month but i am not pain-free. Questions:

1. Can you just make an appointment for an MRI with Dr. Potter with out a referring doctor. Is this diagnostic? Can she tell for sure whether you have PNE. I live outside NYC so this would be easy for me to do. Annoyingly, i have already had a lumbar MRI at Hospital for Special Surgery -- but not for PNE!!

2. Once you have a diagnosis, then what? I am doing PT, what else is there other than surgery?

3. I travel to LA a lot -- has anyone gone to one of the LA doctors listed on this site? If i were to go there, do i need to do the MRI first? Or, do they do their own diagnosis?

4. Finally, are there ANY doctors in NYC that specialize in this?

Sorry for all the questions?

[carolynm]

I can only offer my experience. You need a dr to write a script for the potter mri. It has to be written a specific way. Browse the site for potter mri script & u will find it. May I ask how you developed pn? If it was a pelvic trauma it may respond to PT esp if SIJD is involved. Nerve blocks are typically only diagnostic. There should be someone on the board from NY. Get the script asap bc the wait is months long. Try a urogynecologist or urologist to help take control of your situation. It is such a rarity that we patients have to somtimes manage our own care.
And no, the intravag blocks cannot access all the entrapment locations. It is pointless to do.
Id be happy to help guide you through this mess!
!cari

[beverley]

I'm not sure exactly how i got this. I fell straddle on a jungle gym when i was five but i had no serious injury at the time. I have done a lot of yoga and had a "hamstring injury" at the sitting bone where my sitting bone throbbed for years on on and off. After sitting and working at a desk a lot this past summer, i developed back pain, pain in the SI joint, pain in the front of my hip, numbness in my foot, vulvydynia - burning and pain, feeling like something was coming out of my vulva, Urinary urge/frequncy. Sitting was painingful and made it worse.

The Physical Therapy helped with the burning and some of the pain. They said that the muscles that entrap the pudendal nerve were tight and i have really been working on those. They gave me exercises to stabilize my pelvis and align the SI joint.

I will get my doctor to give me the referral to Dr. Potter -- she could have done this two months ago! And take it from there. What about the LA doctors? I'm going to be in LA sooner than i will get the apt. with Potter? They do the nerve block. Can't that help?

Thanks for your advise.

[donstore]

Beverly- Sheldon Jordan in Santa Monica is good at diagnosing PN and he does CT-guided nerve blocks which can be diagnostic if the anesthetic component numbs the pain area. Therapeutic evidence for blocks is spotty and a few people have gotten worse. One way of diagnosing PN is to do an internal exam and press along the course of the nerve.