Health Organization for Pudendal Education

Does anyone know what his wait time is like? I left a message today, the receptionist says he will call in 2-4 weeks. I'm miserable and meds aren't giving me much relief.

cari

Cari,
Call again in a few days, and tell them you are miserable. Sometimes the squeaky wheel gets the oil! Paulette

Paulette,
How long did it take for you to get a phone call, and then how long after that for the appt? And did he take Dr. hanson's injections as proof of entrapment?
cari

Hi Cari,
I'm hoping Paulette is feeling well enough to respond soon, but I thought I'd butt in, in the mean time. It really does take 2 - 4 weeks for Dr. Conway to return his large volume of phone calls. If you haven't spoken to or seen him before, his call back will be your phone assessment. He'll ask you lots of embarrassing (but necessary) questions about your medical history and pain. This is to determine the necessity of setting up an office appointment. If he recommends you to come to the office, his office staff will contact you within a couple of days for a "one stop shopping" date, if you're a travelling patient: EMG Testing, Exam, Consultation and surgery (usually the next day).
If you've already had nerve blocks, Dr. Conway will not make you repeat them. However, the injections are not proof of entrapment.
Warm regards,
Karyn

Hi, Cari,
Karyn did a good job of answering your questions for me. I know that when he was taking a long time to call me back, I did call his office again, and he called me back that day. If you wanted to speed things up, you could call and just make an appt. I don't know if they would set up the one stop shopping, but I think they would set up an appt. to have the EMG's, and to see Dr. Conway. Keep us posted! paulette

Cari,
I forgot to respond to the questions about Dr. Hanson's injections. That is why I wanted to see Dr. Conway. He was not only willing to accept Dr. Hanson's injections, he was very impressed with the pudendal nerve hydrodissection. Paulette

I saw Dr Conway this past week. I had an Emg with Nurse Winefield who he trained to do the test. He did a physical exam after the EMG. He inserted a medical instrument in my vagina and anis after and pressed on different spots and asked if I had pain or more pain hear and there. After he told me that since the Emg showed a delayed pudendal response on the left and my pain was worst on the left upon exam I have pudendal neuralgia, not just vulvodynia. He told me before the physical exam that if I had only vulvodynia that he wouldn't be able to offer any treatments, but if it were vestibulodynia or pudendal neuralgia he could offer treatments. I told him a had a s1s2 nerve block with Dr Valovska and he said that root doesn't block the pudendal which I already new. I've been seeing Valovska since last spring and she continueous denied that I had pudendal neuralgia. She didn't this this Emg would show anything but it has according to Conway. Conway suggested I do a pudendal nerve block above/at the sacrospinus and sacrotubial ligaments. He suggest if the first doesn't work to do a second 5 weeks later and if that doesn't work to have him do pudendal nerve decompression surgery. He said 40% to 50% of patients notice a significant improvement, 30% notice some improvement, and 20% notice no change.

I've been suffering for 9yrs with needle like feelings on my vulva, itch, and later on the itch was replaced with rawness. I was disdiagnosed with yeast infections by 3 physicians, 1 without taking a sample and the other 2 were negative samples. One other dr diagnosed me with vulvar dystrophy and sent me home with a steriod cream I used for 2yrs, and another dr soon after said it was vulvodynia. Finally last week Conway said it was pudendal neuralgia.

Hi Arora,
Congrats on your diagnosis. Any idea what your next step is?
Who is Dr. Valovska? Is she with Brighams & Womans? It's been my experience that the "Boston Doctors" don't believe in PN, don't acknowledge it and I've also been told on numerous occasions that it's not possible to EMG the pelvic nerves.
Warm regards,
Karyn

I'm honestly not sure. I'm scared cause I don't want to do anything that will cause a fast downward escalation in my pain symptoms. What I need is a second opinion by the next best pudendal doctor. Maybe even a 3rd opinion.

Yes Dr Valovska works for Brigham and Womens at the chestnut hill branch on wednesdays.

AroraNightfire wrote:What I need is a second opinion by the next best pudendal doctor. Maybe even a 3rd opinion.

Not sure if you realize there are only 5 pudendal doctors in the entire US? Please .... if you know of anyone besides Dr. Conway in the area, please share!

AroraNightfire wrote:Yes Dr Valovska works for Brigham and Womens at the chestnut hill branch on wednesdays.

I was afraid of that. I was considering trying to see her, but I guess not. As a member of the IPPS, I would've thought she may have been more open and knowledgeable about PN.