Re: Stupid Things

[Guest guest]

WARNING- long and thought provoking, but no answers provided. : )

Im starting to feel really annoyed at the medical establishment.

OK, lets start with the yeast issue.

One woman on the list, I think it was Robin?, told me her doctor who

diagnosed yeast and did so after others didnt, did a very metciulous and

thorough swabbing of the complete inside ofthe vagina, as well as the

outside.

Why is this not standard? It seems so obvious. I mean, a little dab on

one spot may not show much. Sure, they poke around a bit here and there,

but nothing like the meticulous procedure Robin described.

Alright, heres another one. Regarding all these creams. Why are we not

clearly instructed on what may be an allergic reaction? Why does it seem

like gyns who state that creams can cause irritation continue to

prescribe them, and tell you to continue their use with no alternative

plan in case it bothers you somehow? Why was my vagina shedding chunks

of cells after using Metrogel and everyone is acting like this is OK,

though they pretty obviously acted like they has never seen such a

thing? And why was I encouraged to use cream after cream, and now that I

have VV and am complaining am I told " Well, creams can irritate " ?

Also- why is it that my internist is so sure that a single dose of

Diflucan doesnt do squat, yet it is still prescribed frequently by

gyn's? This could be creating serious problems, by allowing the yeast a

chance to survive the Diflucan.

And finally- why did I have to go to a specialist to diagnose an " itis "

of my " vestibule " and when I didnt show up positive for yeast, he

basically refused to talk about yeast? Actually he refused to talk about

yeast before as well. I go to my internist, and he says gee, why not

just try Diflucan. After all, my symptoms followed on the heels of

yeast.

What I am seeing is a complete inconsistency not only in treatment

approach, but in what is even deemed as significant from doctor to

doctor, and expert to expert. The other thing Im seeing is experts being

only interested in patients that buy their theory %100. Thats not good.

I am very disturbed anytime I hear someone describing a doctor who does

not listen to their experiences. A lifetime with your vulva entitled you

to expertise status of said vulva. I'm afraid that because experts on VV

are hard to find, and they know it, they might be getting big for their

britches, so to speak.

Also, not a single thing Ive read on vv even adresses the possibility

that a period of complete abstinence might help some women. For those of

us with pain on penetration, doesnt it make some kind of sense to not

penetrate for a while? And why is my gyn afraid to tell me to give it

some time and let mother nature take a shot at this? Why are doctors

prescribing creams before test results come back. allowing for the

possibility of further damage being done unecessarily? I'm almost

positive this is what happened to me. The metrogel was prescribed for a

bacterial infection that wasnt there. Then bye bye to chunks of cells,

and here I am. And Im not alone in this story.

I think there is something really wrong going on here. I see doctors

that are considered tops. But they are awash in inconsistnent

information, and they follow a standard protocol of medications without

first diagnosing, and without consieration to the KNOWLEDGE that creams

can really mess a person up? They KNOW this, they SAY this, but where is

the appropriate change in protocol that such knowledge would seem to

demand?

OK, so Im not expecting you all to answer all of this, but I would

really love to hear what any of you think about the bigger picture in

all this. Gyns are supposed to be the caregivers of a very intimate and

important part of our lives. Yet many are not very cautious or

considerate. Im not even talking about personality here, just the

medical treatment. Also, with all the years doctors have been looking at

and poking around in vulvas, it seems they dont have any consensus on

the most basic things. THis is why we are having to get our info in the

internet, and are getting more of it that way, than through the

professionals we pay dearly for that purpose.

My point here, besides to pose questions, is that is seems we must be

extremely vigilant and active in our own treatment. We should be

skeptical at times, open minded at all times.

====================

Thielke

NuMuse Music

Kensington, MD

ts@...

====================

" Klattu...Burata......Nikto

Klattu...Burata......Nikto

Klattu...Burata......Nikto "

[Guest guest]

WARNING- long and thought provoking, but no answers provided. : )

Im starting to feel really annoyed at the medical establishment.

OK, lets start with the yeast issue.

One woman on the list, I think it was Robin?, told me her doctor who

diagnosed yeast and did so after others didnt, did a very metciulous and

thorough swabbing of the complete inside ofthe vagina, as well as the

outside.

Why is this not standard? It seems so obvious. I mean, a little dab on

one spot may not show much. Sure, they poke around a bit here and there,

but nothing like the meticulous procedure Robin described.

Alright, heres another one. Regarding all these creams. Why are we not

clearly instructed on what may be an allergic reaction? Why does it seem

like gyns who state that creams can cause irritation continue to

prescribe them, and tell you to continue their use with no alternative

plan in case it bothers you somehow? Why was my vagina shedding chunks

of cells after using Metrogel and everyone is acting like this is OK,

though they pretty obviously acted like they has never seen such a

thing? And why was I encouraged to use cream after cream, and now that I

have VV and am complaining am I told " Well, creams can irritate " ?

Also- why is it that my internist is so sure that a single dose of

Diflucan doesnt do squat, yet it is still prescribed frequently by

gyn's? This could be creating serious problems, by allowing the yeast a

chance to survive the Diflucan.

And finally- why did I have to go to a specialist to diagnose an " itis "

of my " vestibule " and when I didnt show up positive for yeast, he

basically refused to talk about yeast? Actually he refused to talk about

yeast before as well. I go to my internist, and he says gee, why not

just try Diflucan. After all, my symptoms followed on the heels of

yeast.

What I am seeing is a complete inconsistency not only in treatment

approach, but in what is even deemed as significant from doctor to

doctor, and expert to expert. The other thing Im seeing is experts being

only interested in patients that buy their theory %100. Thats not good.

I am very disturbed anytime I hear someone describing a doctor who does

not listen to their experiences. A lifetime with your vulva entitled you

to expertise status of said vulva. I'm afraid that because experts on VV

are hard to find, and they know it, they might be getting big for their

britches, so to speak.

Also, not a single thing Ive read on vv even adresses the possibility

that a period of complete abstinence might help some women. For those of

us with pain on penetration, doesnt it make some kind of sense to not

penetrate for a while? And why is my gyn afraid to tell me to give it

some time and let mother nature take a shot at this? Why are doctors

prescribing creams before test results come back. allowing for the

possibility of further damage being done unecessarily? I'm almost

positive this is what happened to me. The metrogel was prescribed for a

bacterial infection that wasnt there. Then bye bye to chunks of cells,

and here I am. And Im not alone in this story.

I think there is something really wrong going on here. I see doctors

that are considered tops. But they are awash in inconsistnent

information, and they follow a standard protocol of medications without

first diagnosing, and without consieration to the KNOWLEDGE that creams

can really mess a person up? They KNOW this, they SAY this, but where is

the appropriate change in protocol that such knowledge would seem to

demand?

OK, so Im not expecting you all to answer all of this, but I would

really love to hear what any of you think about the bigger picture in

all this. Gyns are supposed to be the caregivers of a very intimate and

important part of our lives. Yet many are not very cautious or

considerate. Im not even talking about personality here, just the

medical treatment. Also, with all the years doctors have been looking at

and poking around in vulvas, it seems they dont have any consensus on

the most basic things. THis is why we are having to get our info in the

internet, and are getting more of it that way, than through the

professionals we pay dearly for that purpose.

My point here, besides to pose questions, is that is seems we must be

extremely vigilant and active in our own treatment. We should be

skeptical at times, open minded at all times.

====================

Thielke

NuMuse Music

Kensington, MD

ts@...

====================

" Klattu...Burata......Nikto

Klattu...Burata......Nikto

Klattu...Burata......Nikto "

[Guest guest]

:

Wow, your post was so awesome that I printed it out. It's sad, but oh so true.

You know, I remember last year my gyno calling in some very powerful medicine

for a bacteria infection. I picked it up, read the side effects and burst

into tears. The side effect was yeast which I had just gotten rid of. SO! I

didn't take it and guess what? Three days later when the culture came in? It

was negative for bacteria. Did they call to tell me? NO! I had to call them.

If I hadn't called and kept taking it I too would have had chunks coming out.

Grrrr. Your note was excellent!

Lainey

[Guest guest]

:

Thank you for your post. It truly moved me and summed up so much of

what I feel about this whole inadequate treatment of vulvar pain thing.

Thank you for taking the time to put it into words.

You are absolutely right! Doctors are not doing their jobs effectively

in diagnosing and treating vulvar pain. Women are going through

improper treatments, being dismissed as 'crazy' or 'frigid'. Research

is slow in coming and not as thorough as it should be. BUT - there is

reason to keep the hope alive.

I have been scouring through medical journal articles about vulvodynia

and vulvar vestibulitis for over a year now. The ones that I have read

that have come from the end of 1998 and beginning of 1999 are truly

sounding more promising. The authors are suggesting that

corticosteroids be used short-term, rather than the former long-term

standard treatment which caused even worse flares in many women.

Authors are saying that it is now recognized that acetowhitening occurs

in normal vulvar skin, so that is not indicative that a woman has HPV.

In fact, authors are saying, even if a woman has HPV it is probably not

causing the vulvar pain. Authors are recommending surgery as a last

resort only, after six months of vulvar pain and other specific

criteria. Authors are requesting that other authors be more

conscientious when choosing the terminology to refer to general vulvar

pain (Vulvodynia) or a subtype of vulvodynia (Vulvar Vestibulitis,

etc.) Authors are recognizing candidiasis, hormones, topical irritants

and improper treatments for fungal or bacterial infections as possible

causes of vulvar vestibulitis.

Another encouraging thing I've noticed lately is that you can type in

the words " vulvar vestibulitis " on any search engine and you will find

numerous links to pages that contain information on the topic. This is

awesome considering that in January of 1998 when I received my

diagnosis, the only pages I found were the Vulvar Pain Foundation and

Vulvodynia.com. Now MSNBC's and Dr. Koop's website feature information

about vulvodynia!!

Also, vulvodynia has been featured in popular magazines. I just read an

article from Health magazine about vulvar vestibulitis which was

extremely good. Other magazines have featured articles too. Maybe more

will feature articles if we all take 5 minutes a day to write each

magazine out there.

Vulvodynia was covered (albeit not perfectly) on a recent television

show on prime-time television. Even though they did a pretty crummy job

of giving the broad picture of vulvodynia, at least women know there is

a name out there for vulvar pain and have a place to start and that

their pain is not psychological.

This list is comprised of 141 individuals (including me). I always say

there is strength in numbers. WE CAN HELP MAKE A DIFFERENCE! Here's 5

ideas of how we can make a difference:

1) Order the brochures I created and take them to doctor's offices

in your town. Ask them to take the time to look them over and

offer yourself as a resource if they have questions.

2) Start a support group in your area. Put up signs at the library,

grocery store, schools and even ads in the newspaper.

3) Write letters to all the major television news shows requesting

that they take notice of this up and coming medical issue. Tell

them your personal story and offer to be a source for their

segment

4) Go to the bookstore/library and look at books on women's health.

If they address vulvar pain adequately, write them a note of

thanks

if they don't address it, write them a request to pay attention to

this critical women's issue.

5) For our non-US members - consider creating a website in your

native

language (i.e., Italian, Swedish, etc.) that covers vulvodynia

I am not saying we don't have a right to be angry, frustrated, disgusted

with the medical profession and their lack of knowledge/empathy about

our condition. I *am* saying that we should turn that anger into

positive energy and optimism. We CAN make things better for ourselves

and for the women who will be diagnosed in the future. Don't give up

the hope!!

Love,

Heidi

http://www.angelfire.com/md/vulvardisorders

[Guest guest]

:

Thank you for your post. It truly moved me and summed up so much of

what I feel about this whole inadequate treatment of vulvar pain thing.

Thank you for taking the time to put it into words.

You are absolutely right! Doctors are not doing their jobs effectively

in diagnosing and treating vulvar pain. Women are going through

improper treatments, being dismissed as 'crazy' or 'frigid'. Research

is slow in coming and not as thorough as it should be. BUT - there is

reason to keep the hope alive.

I have been scouring through medical journal articles about vulvodynia

and vulvar vestibulitis for over a year now. The ones that I have read

that have come from the end of 1998 and beginning of 1999 are truly

sounding more promising. The authors are suggesting that

corticosteroids be used short-term, rather than the former long-term

standard treatment which caused even worse flares in many women.

Authors are saying that it is now recognized that acetowhitening occurs

in normal vulvar skin, so that is not indicative that a woman has HPV.

In fact, authors are saying, even if a woman has HPV it is probably not

causing the vulvar pain. Authors are recommending surgery as a last

resort only, after six months of vulvar pain and other specific

criteria. Authors are requesting that other authors be more

conscientious when choosing the terminology to refer to general vulvar

pain (Vulvodynia) or a subtype of vulvodynia (Vulvar Vestibulitis,

etc.) Authors are recognizing candidiasis, hormones, topical irritants

and improper treatments for fungal or bacterial infections as possible

causes of vulvar vestibulitis.

Another encouraging thing I've noticed lately is that you can type in

the words " vulvar vestibulitis " on any search engine and you will find

numerous links to pages that contain information on the topic. This is

awesome considering that in January of 1998 when I received my

diagnosis, the only pages I found were the Vulvar Pain Foundation and

Vulvodynia.com. Now MSNBC's and Dr. Koop's website feature information

about vulvodynia!!

Also, vulvodynia has been featured in popular magazines. I just read an

article from Health magazine about vulvar vestibulitis which was

extremely good. Other magazines have featured articles too. Maybe more

will feature articles if we all take 5 minutes a day to write each

magazine out there.

Vulvodynia was covered (albeit not perfectly) on a recent television

show on prime-time television. Even though they did a pretty crummy job

of giving the broad picture of vulvodynia, at least women know there is

a name out there for vulvar pain and have a place to start and that

their pain is not psychological.

This list is comprised of 141 individuals (including me). I always say

there is strength in numbers. WE CAN HELP MAKE A DIFFERENCE! Here's 5

ideas of how we can make a difference:

1) Order the brochures I created and take them to doctor's offices

in your town. Ask them to take the time to look them over and

offer yourself as a resource if they have questions.

2) Start a support group in your area. Put up signs at the library,

grocery store, schools and even ads in the newspaper.

3) Write letters to all the major television news shows requesting

that they take notice of this up and coming medical issue. Tell

them your personal story and offer to be a source for their

segment

4) Go to the bookstore/library and look at books on women's health.

If they address vulvar pain adequately, write them a note of

thanks

if they don't address it, write them a request to pay attention to

this critical women's issue.

5) For our non-US members - consider creating a website in your

native

language (i.e., Italian, Swedish, etc.) that covers vulvodynia

I am not saying we don't have a right to be angry, frustrated, disgusted

with the medical profession and their lack of knowledge/empathy about

our condition. I *am* saying that we should turn that anger into

positive energy and optimism. We CAN make things better for ourselves

and for the women who will be diagnosed in the future. Don't give up

the hope!!

Love,

Heidi

http://www.angelfire.com/md/vulvardisorders

[Guest guest]

,

I totally agree with you. Your point well made. I just wish there was

something we could do about it. I have been in pain for almost a year now

and out of all the doctors I've seen, only one has shown compassion for me.

Doctors are supposed to be there to help you, not hurt you.

Sincerely,

a

[Guest guest]

,

I totally agree with you. Your point well made. I just wish there was

something we could do about it. I have been in pain for almost a year now

and out of all the doctors I've seen, only one has shown compassion for me.

Doctors are supposed to be there to help you, not hurt you.

Sincerely,

a

[Guest guest]

,

I totally agree with you. Your point well made. I just wish there was

something we could do about it. I have been in pain for almost a year now

and out of all the doctors I've seen, only one has shown compassion for me.

Doctors are supposed to be there to help you, not hurt you.

Sincerely,

a