Dee/ Pudendal Nerve Entrapment....

[Guest guest]

Dee, I have not found any doctor that I see that has any

knowledge about PN, although they certainly DO now, as I bring or mail them all

the articles I have. And the new vulvar specialist I am going to see in RI (Dr.

Lori Boardman) is already aware of it as she has a couple of patients that have

PN. She is becoming very knowledgeable in the vulvar community and is

developing just as much notoriety as Dr , with new more innovative ideas

on vulvar all problems (Vulvodynia, Vestibulitis, LS, etc.).

And yes, the surgery is much, much more available today than

when that article was written. The doctors in Arizona, California and Texas

plus Dr. Conway here in NH are overflowing with PN patients that have had or are

going to have PN surgery. A year ago you could get an immediate appointment

with Dr, Conway for a PN consultation, and now there is a four month wait. And

the only reason I know this is that I am in contact with so many of them. We

have quite a large group of patients that I talk to here in New England. And I

am very active in the TIPNA and Pudendal.info pudendal web groups.

And a year ago, I would have agreed with you Dee, but since you

have been on “vacation” from the group, there has been a lot of

discussion about it. My doctor gives free phone consultations and I know

several from this group who have called him for advice and two members who have

travelled from out-of-state to see him (including Chelle). The pudendal sites

are talking about national fund raisers as soon as we can find a celebrity that

will sponsor it. This is becoming a huge problem that both men and women have

suffered with for years, and have gone to doctor after doctor who could

not find out what was causing their pelvic pain.

And it wasn’t until Dr. Bautrant in France who developed

the procedure to treat the pudendal nerve, has there been any help in the US. I

actually spoke to one of the first US patients who flew to France to have

surgery with him. That was four years ago, and she is fine now. That is why I

have such great hope that I will be too. Dr. Conway spent two six month stints

in France learning the procedure. I was one of his first five – and I

took a chance, but I believed in him. You only have to speak to him once and

you recognize his devotion in trying to help PN patients.

And as I mentioned in other emails, that doesn’t mean just

surgery, he always gives all the other options to try first, and surgery is always

the last resort. The files that I added to the group show how PT is such a big

part of the cure. Both and Liz have travelled all over the country

giving seminars on PN, and just this month they are giving an accredited course

for PT’s on pre and post PN physical therapy. So, all of this has taken

off in leaps and bounds in the US. And the same for the doctors in California,

Texas, and Arizona - they have their supporters who are getting the knowledge

out that there is finally some help for this undiagnosed pelvic pain.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Dee Troll

Sent: Wednesday, April 02, 2008 4:03 AM

To: VulvarDisorders

Subject: Re: Pudendal Nerve Entrapment....

Thanks nne,

I didn't even look at the date.. but still thought 'some' of

the information was good.

I wonder if that type of a surgery (or even the

knowledge of it) is really that much more available today? I

know you've more than done your research (definitely) and have shared it

and with some excellent physicians names but I just wonder generally how

aware people or physicians are of it overall and thank goodness there are those

six you mentioned. Heck most aren't even aware of PT as even a

starting place. *sigh*

Dee ~