February 20, 2009

Starting a Database

For my blog, I would like to start a database of doctors across the country who treat vulvodynia, pudendal neuralgia, pelvic floor dysfunction, vulvar vestibulitis and interstitial cystitis.

If you have a doctor that you see, please send me his or her name, address and phone number. More importantly, please send me any comments you have about that doctor and rate your experience.

It took me 5 years to find the right doctor. With this list, maybe we can help save someone else from years of discomfort and deadends.

Please email your doctor's information to lifewithvulvodyniaATgmail.com or post comments to this entry.

Thank you very much for your contribution.


beth gamble said...

Have you had a doc or physical therapist recommend types of exercise? I know there is much debate on this issue, but my diagnosing doc strongly discourages anything that causes hip flexion and/or raising the knee at a 90 degree angle. For this reason, stairs are strongly discouraged, and my family and I actually moved into a different home last summer so my bedroom would be on the main level. I am not to do anything other than walking for up to 5 years post op. If you have pudendal neuralgia, it could be making it worse. I wish I had known that, and not tried to 'work thru the burn' or sit for any amount of time, as I probably made my condition worse. Just something to consider. I'm sorry you suffer from other issues in that area as well....they do seem to go hand in hand. IT SUCKS!!!! Let me know if I can answer any questions for you....I am getting certified as a wellness coach, and hope to start a local supportive group for PNE patients here in the Twin Cities in Minnesota. Take care.

beth gamble said...

My surgeon -- one of 4 or 5 in the country who learned from the best (in France) and only see patients with pudendal nueralgia:

MAPS Medical Pain Clinic-Edina
7400 France Avenue South
Suite 100
Edina, MN 55435
(763) 537-6000

PTW said...

I second Beth's naming of Stanley Antolak.

Anonymous said...

i found a great doctor in new jersey im only 14 and this started when i was 13.. she is helping me by starting with medicine and then going to physical therapy. her name is Dr.hersh and she's in new jersey that's all i know.. but she is amazing and is helping me soooooo much she understands and dyagnoses vuvlodynia