advice? vvs/vulvar pain specialist in NYC?

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Hi all:

This is my first post, in fact this is my first experience with any

online group, period.

So, I guess I'll start with a quick history:

I've had vulvar vestibulitis/vulvodynia/pelvic floor dysfunction, mild

IBS and IC since 2001. Well, when I say that I have all of the above,

what I mean is that I have been diagnosed with all of the above at

various times by a variety of gynos/urologists/gastroenterologists but

I'm not really sure what I have. And, to be honest neither are the

doctors that I've seen so far! I have cyclical pain in the

vestibule/vulva areas and particularly around the clitoris (both

inside and out). I sometimes also have pain deep inside my vagina

too. The pain seems to morph from being a burning pain to a sharp pain

with no particular pattern. The only point of significance seems to

be that the pain is always at it's worst during the latter half of my

cycle and particularly during the last 10 days before my period. I

sometimes get particularly bad 'flares' which are characterized by a

lot of thinnish whiteish discharge which seems to precipitate a rash

around my vulva area. This is incredibly painful and usually the skin

becomes red, inlfamed and has bright red spots/lesion-like things

which occassionally bleed. This kind of flare happens about four

times a year on average. I also have urinary frequency and some

burning. I have tried numerous therapies including amyltriptyline;

elmiron (for IC); hydroxyzine; vaginal estrogen suppositories; pelvic

floor physical therapy; lidocaine; metrozoanole; antibiotics; douches

and various yeast treatments and I am about to start treatment with

cromolyn cream. I am currently taking diflucan and nystatin, although

I just had a lab perform PCR testing for 6 different strains of

candida and all were negative. I also suffer from chronic fatigue

syndrome and the root cause of this was a pesky little thing called

mycoplasma pneumonie. My doc thinks that we eradicated it with six

months worth of antibiotics but I haven't actually been swabbed for it

(only blood work), so this is the next test on my list.

I am determined to find an answer to what the hell is wrong with me

and that's why I decided to join this group. I've spent the past

hour browsing through a lot of the posts on this site and I'm

heartened to read about people who are actually getting better,

finding treatments that work and - the holy grail of holy grails-

actually having pain-free sex!!! Thanks for sharing your experiences

and giving me hope.

Ooops. This is turning into quite the long first post.

I was wondering if anyone out there knows of any vulvar pain

specialists in NYC? After going through several gynecologists, I am

now working primarily with my primary care doctor who is lovely and

spends a great deal of time discussing possible treatments with me.

However, I usually scavenge up most of the data/research in-between

visits and 'suggest' possible treatments/possible tests to her each

time I go. This is not a terrible situation but I would really like to

find a doctor who specializes in vaginal pain. I read a post

mentioning the NYU clinic but I went there about a year ago and had a

terrible experience with the head guy, so needless to say, I'm not

going back. I'll travel a little ways if I have to, the name

Kellog, I think, keeps coming up. Does anyone know where she's

located and if she takes insurance?

Anyways, sorry that this post is so long. Thanks and appreciation for

any info out there.

love to all,

Jane