Re: advice? vvs/vulvar pain specialist in NYC?

October 30, 2006

Hi Jaelynne:

Thanks for the referral. I've heard his name before but probably

dismissed it b/c he doesn't take insurance but I am running out of

options at this point, so I'm tempted to give him a try. Do you know

anyone that has had any success with him?

Thanks again for the info.

Jane

> >

> > 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

> >

>

October 30, 2006

Thanks Hollis:

I also think that there has to be an hormonal connection and so I have

been working with one of my doctors and taking bio-identical hormone

supplements. I haven't been tested in a few months but the last time

I had blood work it seemed like my levels were within range, although

who knows what that really means. All I know is that since I've been

taking bio-identical hormones, I've been feeling a lot better before,

during and after my period however so far they have not had any impact

on my vaginal pain. I probably need to find someone who's more of an

expert in that field, but as you quite rightly point out knowledgeable

docs are hard to find!

Jane

>

> In a message dated 10/27/2006 11:12:26 AM Eastern Standard Time,

> bowlesjane@... writes:

>

> > 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.

> >

>

> When you routinely experience cyclical flare-up like this, it really

> does point to a hormonal connection. Women who are low in

> estradiol (or too high in progesterone) in the luteal phase -- when

> estradiol is naturally at its lowest levels -- often see this pattern

> in their pain fluctuations. Inadequate estradiol levels often lead

> to increase in pain and sensitivity of vulvar/vaginal tissues; and

> supplementing systemically and/or topical and/or vaginally can

> often help.

>

> I would suggest that you seek out a practitioner who has an

> understanding of the relationship between hormone imbalances

> and vulvar pain to get testing. Easier said than done (finding a

> knowledgeable M.D., that is), but it sounds as if this could

> potentially be very helpful for you, along with whatever else

> you pursue.

>

> Hollis

>

October 30, 2006