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

[Guest guest]

Hi Jane,

Glad that you found us, but sorry to hear that you're

in the same " pain " boat as many of us are.

I can't offer any advice with the drugs (but there are

many on here who can) but I thought I'd post this link

so that you and others can use it to find a good PT

who specializes in Pelvic Floor issues:

http://www.ic-network.com/md/ptlistings.html

It goes throught states alphabetically, so keep

scrolling to find your location.

I haven't used anyone on there since I'm in Toronto,

Canada, but I'm sure it can help others

Also, have you considered using topical estrogen

and/or testosterone creams?

There are more than a few here who've used it with

great results (*I'm looking at you Dee!*)

I'm still trying to get my hands on some (it's harder

to come by in Canada)...but it's definately worth a

shot for you.

No worries about the long post, that's what we're all

here for!

*hugs*

(in Toronto, Canada)

--- nvagy2001 wrote:

> 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

>

>

>

>

__________________________________________________

[Guest guest]

nvagy2001 wrote: Hi all: WELCOME JANE!!This is my first post, in fact this is my first experience with anyonline group, period. So, I guess I'll start with a quick history: I've had vulvar vestibulitis/vulvodynia/pelvic floor dysfunction, mildIBS 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 atvarious times by a variety of

gynos/urologists/gastroenterologists butI'm not really sure what I have. And, to be honest neither are thedoctors that I've seen so far! I have cyclical pain in thevestibule/vulva areas and particularly around the clitoris (bothinside and out). I sometimes also have pain deep inside my vaginatoo. The pain seems to morph from being a burning pain to a sharp painwith no particular pattern. The only point of significance seems tobe that the pain is always at it's worst during the latter half of mycycle and particularly during the last 10 days before my period. Isometimes get particularly bad 'flares' which are characterized by alot of thinnish whiteish discharge which seems to precipitate a rasharound my vulva area. This is incredibly painful and usually the skinbecomes red, inlfamed and has bright red spots/lesion-like thingswhich occassionally bleed. This kind of flare happens about fourtimes a year on

average. I also have urinary frequency and someburning. I have tried numerous therapies including amyltriptyline;elmiron (for IC); hydroxyzine; vaginal estrogen suppositories; pelvicfloor physical therapy; lidocaine; metrozoanole; antibiotics; douchesand various yeast treatments and I am about to start treatment withcromolyn cream. I am currently taking diflucan and nystatin, althoughI just had a lab perform PCR testing for 6 different strains ofcandida and all were negative. I also suffer from chronic fatiguesyndrome and the root cause of this was a pesky little thing calledmycoplasma pneumonie. DID THEY CHECK YOU FOR LYME???My doc thinks that we eradicated it with sixmonths worth of antibiotics but I haven't actually been swabbed for it(only blood work), so this is the next test on my list.HOW DID U FEEL ON ANTIBIOTICS??? DID THEY HELP YOU AND WERE YOU TREATING FOR YEAST IN

ADDITION?I am determined to find an answer to what the hell is wrong with meand that's why I decided to join this group. I've spent the pasthour browsing through a lot of the posts on this site and I'mheartened 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 experiencesand giving me hope. TRUST ME, THIS GROUP HAS SAVED MY LIFE AND HOPES MANY TIMES OVER THE LAST 18 MONTHS. I LOVE ALL OF YOU. JANE YOU WILL FIND ALOT OF CAUSES AND SOLUTIONS HERE, WE ALL HELP EACH OTHER. HAPPY (BUT SAD) YOU ARE HERE.(BUT IN THE RIGHT PLACE).Ooops. This is turning into quite the long first post. PLEASE KEEP GOING. THIS IS AN INTRODUCTION POST, GOTTA GIVE US AS MUCH AS POSSIBLE TO GO ON. ( :I was wondering if anyone out there knows of any vulvar

painspecialists in NYC? After going through several gynecologists, I amnow working primarily with my primary care doctor who is lovely andspends a great deal of time discussing possible treatments with me. However, I usually scavenge up most of the data/research in-betweenvisits and 'suggest' possible treatments/possible tests to her eachtime I go. This is not a terrible situation but I would really like tofind a doctor who specializes in vaginal pain. I read a postmentioning the NYU clinic but I went there about a year ago and had aterrible experience with the head guy, so needless to say, I'm notgoing back. I'll travel a little ways if I have to, the name Kellog, I think, keeps coming up. Does anyone know where she'slocated and if she takes insurance?Anyways, sorry that this post is so long. Thanks and appreciation forany info out there.love to all, TAKE CARE, LOVE

SARAHJane

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi :

Thanks for your reply and the website address. I did a year of

biofeedback and electric stim all to no avail so I'm sort of done with

the PT route for now. I also tried topical estrogen cream. I was

living in Japan at the time, so I'm not sure if there is a difference

in strength between the Japanese and American stuff, and I haven't

tried it since I got back to NYC. I'll definitely talk to my doc

about it. I can't believe that it's harder to find in Canada, I

thought it was much easier to get meds there! Can you order it from a

compounding pharmacy in the US and have it shipped?

Anyway, I'm glad I found the group too.

Thanks for the advice.

Much love

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

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi :

Thanks for your reply and the website address. I did a year of

biofeedback and electric stim all to no avail so I'm sort of done with

the PT route for now. I also tried topical estrogen cream. I was

living in Japan at the time, so I'm not sure if there is a difference

in strength between the Japanese and American stuff, and I haven't

tried it since I got back to NYC. I'll definitely talk to my doc

about it. I can't believe that it's harder to find in Canada, I

thought it was much easier to get meds there! Can you order it from a

compounding pharmacy in the US and have it shipped?

Anyway, I'm glad I found the group too.

Thanks for the advice.

Much love

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

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi :

Thanks for your reply and the website address. I did a year of

biofeedback and electric stim all to no avail so I'm sort of done with

the PT route for now. I also tried topical estrogen cream. I was

living in Japan at the time, so I'm not sure if there is a difference

in strength between the Japanese and American stuff, and I haven't

tried it since I got back to NYC. I'll definitely talk to my doc

about it. I can't believe that it's harder to find in Canada, I

thought it was much easier to get meds there! Can you order it from a

compounding pharmacy in the US and have it shipped?

Anyway, I'm glad I found the group too.

Thanks for the advice.

Much love

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

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Thanks !

To answer your questions:

Yep. I've been checked quite a few times for lyme, each time was

negative, so no easy answers unfortunately.

I was on Cipro for about half the time and then azythromycin for the

rest of the time. I felt pretty bad on the antibiotics at first, my

chronic fatigue symptoms relapsed badly for about a month but from

then on it was onward and upward. I only had one yeast infection

towards the end of the course but took diflucan for it. I did develop

gastrointestinal problems though, bloating and a pain in my lower

abdomen, I had a colonoscopy and everything was normal, and my chronic

fatigue doc basically said that she thought the gastro symptoms were

b/c of the antibiotics. They have cleared up since I've been taking

nystatin.

A lot of my vulvovaginal symptoms began to clear up on the

antibiotics but at the time I thought it was due to the

elmiron/hydroxyzine protocol that I was taking for IC. I've been off

antibiotics for about five months now and while the fatigue symtpoms

are still being kept in check my vulvovaginal symtpoms are coming back

into full swing. I only realised the connection a few weeks ago when

the candida tests came up negative. So, my next step is to get my

cervix swabbed for mycoplasma and ureaplasma and see what those

results are. If they're positive, I may have to go back on the

antibiotics! After 5 and a half years of complete misery I'm ready to

throw the book at this thing and I'll try just about any combo of meds

going, the more the merrier. Which is why I was asking about the

cromolyn cream.

Hope this answers your questions and if anyone out there knows any

specialists in or around NYC, or knows who Kellog is, please let

me know.

Thanks again for your reply and I hope that the info in this

post is useful.

Much Love

Jane

Hi all: WELCOME JANE!!

>

> 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. DID THEY CHECK YOU FOR LYME???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.HOW DID U

FEEL ON ANTIBIOTICS??? DID THEY HELP YOU AND WERE YOU TREATING FOR

YEAST IN ADDITION?

>

> 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. TRUST ME, THIS GROUP HAS SAVED MY LIFE AND HOPES

MANY TIMES OVER THE LAST 18 MONTHS. I LOVE ALL OF YOU. JANE YOU WILL

FIND ALOT OF CAUSES AND SOLUTIONS HERE, WE ALL HELP EACH OTHER. HAPPY

(BUT SAD) YOU ARE HERE.(BUT IN THE RIGHT PLACE).

>

> Ooops. This is turning into quite the long first post. PLEASE KEEP

GOING. THIS IS AN INTRODUCTION POST, GOTTA GIVE US AS MUCH AS POSSIBLE

TO GO ON. ( :

>

> 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, TAKE CARE, LOVE SARAH

>

> Jane

>

>

>

>

>

>

> ---------------------------------

> All-new Yahoo! Mail - Fire up a more powerful email and get things

done faster.

>

[Guest guest]

Thanks !

To answer your questions:

Yep. I've been checked quite a few times for lyme, each time was

negative, so no easy answers unfortunately.

I was on Cipro for about half the time and then azythromycin for the

rest of the time. I felt pretty bad on the antibiotics at first, my

chronic fatigue symptoms relapsed badly for about a month but from

then on it was onward and upward. I only had one yeast infection

towards the end of the course but took diflucan for it. I did develop

gastrointestinal problems though, bloating and a pain in my lower

abdomen, I had a colonoscopy and everything was normal, and my chronic

fatigue doc basically said that she thought the gastro symptoms were

b/c of the antibiotics. They have cleared up since I've been taking

nystatin.

A lot of my vulvovaginal symptoms began to clear up on the

antibiotics but at the time I thought it was due to the

elmiron/hydroxyzine protocol that I was taking for IC. I've been off

antibiotics for about five months now and while the fatigue symtpoms

are still being kept in check my vulvovaginal symtpoms are coming back

into full swing. I only realised the connection a few weeks ago when

the candida tests came up negative. So, my next step is to get my

cervix swabbed for mycoplasma and ureaplasma and see what those

results are. If they're positive, I may have to go back on the

antibiotics! After 5 and a half years of complete misery I'm ready to

throw the book at this thing and I'll try just about any combo of meds

going, the more the merrier. Which is why I was asking about the

cromolyn cream.

Hope this answers your questions and if anyone out there knows any

specialists in or around NYC, or knows who Kellog is, please let

me know.

Thanks again for your reply and I hope that the info in this

post is useful.

Much Love

Jane

Hi all: WELCOME JANE!!

>

> 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. DID THEY CHECK YOU FOR LYME???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.HOW DID U

FEEL ON ANTIBIOTICS??? DID THEY HELP YOU AND WERE YOU TREATING FOR

YEAST IN ADDITION?

>

> 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. TRUST ME, THIS GROUP HAS SAVED MY LIFE AND HOPES

MANY TIMES OVER THE LAST 18 MONTHS. I LOVE ALL OF YOU. JANE YOU WILL

FIND ALOT OF CAUSES AND SOLUTIONS HERE, WE ALL HELP EACH OTHER. HAPPY

(BUT SAD) YOU ARE HERE.(BUT IN THE RIGHT PLACE).

>

> Ooops. This is turning into quite the long first post. PLEASE KEEP

GOING. THIS IS AN INTRODUCTION POST, GOTTA GIVE US AS MUCH AS POSSIBLE

TO GO ON. ( :

>

> 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, TAKE CARE, LOVE SARAH

>

> Jane

>

>

>

>

>

>

> ---------------------------------

> All-new Yahoo! Mail - Fire up a more powerful email and get things

done faster.

>

[Guest guest]

Hi Jane,

Sorry to hear that PT wasn't very helpful.

I don't know if there's a diff. with the estrogen in

Japan vs The US - but I'll bet there is since the

stuff that's available here is SYNTHETIC estrogen,

while the stuff in the US is BIO-IDENTICAL..it makes a

huge difference in effectivness, so it wouldn't hurt

for you to try it again.

Dee's the expert on the stuff, so I'd ask her

Yup, it's harder to get some stuff in Canada

unfortunetly

I'm in the process of trying to order some from the US

and have it shipped here, but I still need a

prescription, so trying to find out if a canadian

prescrip. works for a US pharmacy.

Good luck to you in finding relief

& we're glad to have you here with us

-heather (in T.O)

--- nvagy2001 wrote:

> Hi :

>

> Thanks for your reply and the website address. I

> did a year of

> biofeedback and electric stim all to no avail so I'm

> sort of done with

> the PT route for now. I also tried topical estrogen

> cream. I was

> living in Japan at the time, so I'm not sure if

> there is a difference

> in strength between the Japanese and American stuff,

> and I haven't

> tried it since I got back to NYC. I'll definitely

> talk to my doc

> about it. I can't believe that it's harder to find

> in Canada, I

> thought it was much easier to get meds there! Can

> you order it from a

> compounding pharmacy in the US and have it shipped?

>

> Anyway, I'm glad I found the group too.

>

> Thanks for the advice.

>

> Much love

>

> 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

>

=== message truncated ===

__________________________________________________

[Guest guest]

Dear Jane,

Kellogg is right outside of Philly. I saw her. She was very nice but not convenient for me since I live about 3 1/2 hours away in CT. You might want to try her. Also, I go to the Fibro and Fatigue Center and they have an interesting approach that I think would be of interest to you. It looks at the whole body and boosts the immune system. They are located in Norwalk CT which is less than an hour's train ride from NYC.

In NYC I have seen Dr. Peacocke and did not have luck with her one size fits all approach. Perhaps someone else would, but she definitely applies the same protocol to everyone - or at least she did 3 years ago when I saw her. I saw Dr. Glazer for Biofeedback and Pamela Morisson for PT. However the FFC discovered Lyme and a poor functioning immune system so I think that I need to address that before anything else could help.I also saw Dr. Bruce Solitaire, a rheumaltologist who treats fibro with guaifennesin. He was very nice but I didn't respond to the guai. I do not have classic fibro at all. No 18 tender points. But my bloodwork done through FFC and some symptoms are completely in sync with other fibro patients. Dr. Solitaire also thought that I had fibro despite the traditional 18 tender points because he mapped the body for

phosphate deposits and my body was consistent with his other patients. I have IBS, insomnia, pelvic floor pain, stiff joints along with the 24/7 labial burning. The FFC has actually helped me the most. You can go to www.fibroandfatigue.com to see their approach or if you are interested we could chat on the phone.

Best wishes. I wish there was an easy answer. For me the FFC is the best so far.

Love,

Sandi

[Guest guest]

Hi:

Quick answer...............

Kellogg Spadt is in Philadelphia, PA at Graduate Hospital. .

She is amazing, I've been using her for two years. I have personal choice insurance, she takes that. Call to find out if she takes whatever insurance you have.

Sherri

> > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS** > > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders > to search our archives, files, articles, etc. > > ***

[Guest guest]

Hi:

Quick answer...............

Kellogg Spadt is in Philadelphia, PA at Graduate Hospital. .

She is amazing, I've been using her for two years. I have personal choice insurance, she takes that. Call to find out if she takes whatever insurance you have.

Sherri

> > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS** > > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders > to search our archives, files, articles, etc. > > ***

[Guest guest]

Hi:

Quick answer...............

Kellogg Spadt is in Philadelphia, PA at Graduate Hospital. .

She is amazing, I've been using her for two years. I have personal choice insurance, she takes that. Call to find out if she takes whatever insurance you have.

Sherri

> > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS** > > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders > to search our archives, files, articles, etc. > > ***

[Guest guest]

Dear Sandi:

Thanks for taking the time to email me. I agree Philly is a long

drive for me too from the city but I'm getting desperate! The Fibro

and Fatigue Center sounds interesting, although I'm lucky enough to

have found an excellent doctor for Chronic Fatigue in the city. In

case you're interested her name is Dr. Levine and she also takes

an holistic approach. She did an excellent job of getting to the

bottom of my chronic fatigue (it was casued by mycoplasma pneumonie)

but unfortunately her practice is extremely busy and so she doesn't

have time to look into my vulvovaginal problems. However, I do go to

her office every week and get IV nutrition (for my immune system) and

try to make an appt with her every 2-3 months for bloodwork/updates.

So were your vulvovaginal problems related to the Lyme disease? Have

they cleared up?

I'll definitely look into the FFC. Do you happen to know if they take

insurance?

Thanks again for your mail.

Love

Jane

>

> Dear Jane,

>

> Kellogg is right outside of Philly. I saw her. She was very

nice but not convenient for me since I live about 3 1/2 hours away in

CT. You might want to try her. Also, I go to the Fibro and Fatigue

Center and they have an interesting approach that I think would be of

interest to you. It looks at the whole body and boosts the immune

system. They are located in Norwalk CT which is less than an hour's

train ride from NYC.

>

> In NYC I have seen Dr. Peacocke and did not have luck with her one

size fits all approach. Perhaps someone else would, but she

definitely applies the same protocol to everyone - or at least she did

3 years ago when I saw her. I saw Dr. Glazer for Biofeedback and

Pamela Morisson for PT. However the FFC discovered Lyme and a poor

functioning immune system so I think that I need to address that

before anything else could help.

>

> I also saw Dr. Bruce Solitaire, a rheumaltologist who treats fibro

with guaifennesin. He was very nice but I didn't respond to the guai.

I do not have classic fibro at all. No 18 tender points. But my

bloodwork done through FFC and some symptoms are completely in sync

with other fibro patients. Dr. Solitaire also thought that I had

fibro despite the traditional 18 tender points because he mapped the

body for phosphate deposits and my body was consistent with his other

patients. I have IBS, insomnia, pelvic floor pain, stiff joints

along with the 24/7 labial burning. The FFC has actually helped me

the most. You can go to www.fibroandfatigue.com to see their approach

or if you are interested we could chat on the phone.

>

> Best wishes. I wish there was an easy answer. For me the FFC is

the best so far.

>

> Love,

> Sandi

>

[Guest guest]

Thanks Sherri, will do.

Jane

>

> Hi:

>

> Quick answer...............

>

> Kellogg Spadt is in Philadelphia, PA at Graduate Hospital.

.

>

> She is amazing, I've been using her for two years. I have personal

choice insurance, she takes that. Call to find out if she takes

whatever insurance you have.

>

>

> Sherri

>

> > >

> >

> >

> >

> > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

> >

> > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

> > to search our archives, files, articles, etc.

> >

> > ***

[Guest guest]

Thanks Sherri, will do.

Jane

>

> Hi:

>

> Quick answer...............

>

> Kellogg Spadt is in Philadelphia, PA at Graduate Hospital.

.

>

> She is amazing, I've been using her for two years. I have personal

choice insurance, she takes that. Call to find out if she takes

whatever insurance you have.

>

>

> Sherri

>

> > >

> >

> >

> >

> > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

> >

> > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

> > to search our archives, files, articles, etc.

> >

> > ***

[Guest guest]

Thanks Sherri, will do.

Jane

>

> Hi:

>

> Quick answer...............

>

> Kellogg Spadt is in Philadelphia, PA at Graduate Hospital.

.

>

> She is amazing, I've been using her for two years. I have personal

choice insurance, she takes that. Call to find out if she takes

whatever insurance you have.

>

>

> Sherri

>

> > >

> >

> >

> >

> > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

> >

> > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

> > to search our archives, files, articles, etc.

> >

> > ***

[Guest guest]

Hi Jane,

The FFC doesn't take insurance but I get it covered at 70% as out of network. It sounds like your CF doc does similar stuff. Dr. Campo at FFC doesn't do any vag exam either b/c he views it as an immune problem due to Lyme/fibro and not a separate issue. I believe he is right.

I did nutritional IVs and shots of glutathione and immunoglobulin. I am now on lots of different supplements and Rx to build up my immune system. I have had some better days, but still am in 24/7 pain. My husband notices a big difference. I am in more of that "God, when will this pain go away" mode than "I am bedridden" mode so that is progress. Pain on contact (POC) is much better too. But I am still in pain and still struggling.

I will do the Lyme treatment in a few months.

Sounds like your doc is a good one. You can keep the FFC in mind as a plan B!

If you ever need to know more about them I will be happy to share my experiences with you in more depth.

Love,

Sandi

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

Dear Sandi:Thanks for taking the time to email me. I agree Philly is a longdrive for me too from the city but I'm getting desperate! The Fibroand Fatigue Center sounds interesting, although I'm lucky enough tohave found an excellent doctor for Chronic Fatigue in the city. Incase you're interested her name is Dr. Levine and she also takesan holistic approach. She did an excellent job of getting to thebottom of my chronic fatigue (it was casued by mycoplasma pneumonie)but unfortunately her practice is extremely busy and so she doesn'thave time to look into my vulvovaginal problems. However, I do go toher office every week and get IV nutrition (for my immune system) andtry to make an appt with her every 2-3 months for bloodwork/updates. So were your vulvovaginal problems related to the Lyme disease? Havethey cleared up?I'll definitely look into the FFC. Do you happen to know if they

takeinsurance?Thanks again for your mail.LoveJane>> Dear Jane,> > Kellogg is right outside of Philly. I saw her. She was verynice but not convenient for me since I live about 3 1/2 hours away inCT. You might want to try her. Also, I go to the Fibro and FatigueCenter and they have an interesting approach that I think would be ofinterest to you. It looks at the whole body and boosts the immunesystem. They are located in Norwalk CT which is less than an hour'strain ride from NYC.> > In NYC I have seen Dr. Peacocke and did not have luck with her onesize fits all approach. Perhaps someone else would, but shedefinitely applies the same protocol to everyone - or at least she did3 years ago when I

saw her. I saw Dr. Glazer for Biofeedback andPamela Morisson for PT. However the FFC discovered Lyme and a poorfunctioning immune system so I think that I need to address thatbefore anything else could help.> > I also saw Dr. Bruce Solitaire, a rheumaltologist who treats fibrowith guaifennesin. He was very nice but I didn't respond to the guai.I do not have classic fibro at all. No 18 tender points. But mybloodwork done through FFC and some symptoms are completely in syncwith other fibro patients. Dr. Solitaire also thought that I hadfibro despite the traditional 18 tender points because he mapped thebody for phosphate deposits and my body was consistent with his otherpatients. I have IBS, insomnia, pelvic floor pain, stiff jointsalong with the 24/7 labial burning. The FFC has actually helped methe most. You can go to www.fibroandfatigue .com to see their approachor if you are interested we could chat on the

phone.> > Best wishes. I wish there was an easy answer. For me the FFC isthe best so far.> > Love,> Sandi>

[Guest guest]

Dear Sandi:

Yes. I think that Dr. Levine has really done an excellent job of

diagnosing and controlling my chronic fatigue symptoms. I agree that

feeling well enough to just do everyday things again is the first

goal. I, too was 'bedridden' for a while and I couldn't be bothered

to address the vuvlovaginal issues then either. Stick with the

nutritional therapy, I really believe in it and the sooner that you

can get onto the Lyme Disease program, the better -

I hope that you continue to feel better, and that we all actually

fully recover one day. I think it's possible if we can find the right

combination of doctors.

Much Love,

Jane

> >

> > Dear Jane,

> >

> > Kellogg is right outside of Philly. I saw her. She was very

> nice but not convenient for me since I live about 3 1/2 hours away in

> CT. You might want to try her. Also, I go to the Fibro and Fatigue

> Center and they have an interesting approach that I think would be of

> interest to you. It looks at the whole body and boosts the immune

> system. They are located in Norwalk CT which is less than an hour's

> train ride from NYC.

> >

> > In NYC I have seen Dr. Peacocke and did not have luck with her one

> size fits all approach. Perhaps someone else would, but she

> definitely applies the same protocol to everyone - or at least she did

> 3 years ago when I saw her. I saw Dr. Glazer for Biofeedback and

> Pamela Morisson for PT. However the FFC discovered Lyme and a poor

> functioning immune system so I think that I need to address that

> before anything else could help.

> >

> > I also saw Dr. Bruce Solitaire, a rheumaltologist who treats fibro

> with guaifennesin. He was very nice but I didn't respond to the guai.

> I do not have classic fibro at all. No 18 tender points. But my

> bloodwork done through FFC and some symptoms are completely in sync

> with other fibro patients. Dr. Solitaire also thought that I had

> fibro despite the traditional 18 tender points because he mapped the

> body for phosphate deposits and my body was consistent with his other

> patients. I have IBS, insomnia, pelvic floor pain, stiff joints

> along with the 24/7 labial burning. The FFC has actually helped me

> the most. You can go to www.fibroandfatigue .com to see their approach

> or if you are interested we could chat on the phone.

> >

> > Best wishes. I wish there was an easy answer. For me the FFC is

> the best so far.

> >

> > Love,

> > Sandi

> >

>

[Guest guest]

You can try Goldstein. He is expensive and doesn't

work with Insurance Companies (you have to submit the claim to

your insurance yourself). He practices in Wash DC and Manhattan.

His Manhattan number is also his Washington DC practice: .

He himself doesn't do PT but he could probably recommend someone.

Jaelynne

>

> 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

>

[Guest guest]

You can try Goldstein. He is expensive and doesn't

work with Insurance Companies (you have to submit the claim to

your insurance yourself). He practices in Wash DC and Manhattan.

His Manhattan number is also his Washington DC practice: .

He himself doesn't do PT but he could probably recommend someone.

Jaelynne

>

> 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

>

[Guest guest]

You can try Goldstein. He is expensive and doesn't

work with Insurance Companies (you have to submit the claim to

your insurance yourself). He practices in Wash DC and Manhattan.

His Manhattan number is also his Washington DC practice: .

He himself doesn't do PT but he could probably recommend someone.

Jaelynne

>

> 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

>

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

> >

>