RE: RE: Sucess Story ( B.)

[Guest guest]

I think a link would be a great idea, and I am always willing to talk with

other women about my experience. I went through 8 years of fear and pain

before finding help. I can sympathise with the frustration at the doctors

office. My first doctor sent me to a psycologist for my problem and told me

it was a sexual identity issue. It is amazing how callous doctors can be,

especially when they are uneducated about the condition.

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

[Guest guest]

I think a link would be a great idea, and I am always willing to talk with

other women about my experience. I went through 8 years of fear and pain

before finding help. I can sympathise with the frustration at the doctors

office. My first doctor sent me to a psycologist for my problem and told me

it was a sexual identity issue. It is amazing how callous doctors can be,

especially when they are uneducated about the condition.

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

[Guest guest]

I think a link would be a great idea, and I am always willing to talk with

other women about my experience. I went through 8 years of fear and pain

before finding help. I can sympathise with the frustration at the doctors

office. My first doctor sent me to a psycologist for my problem and told me

it was a sexual identity issue. It is amazing how callous doctors can be,

especially when they are uneducated about the condition.

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

[Guest guest]

I know I'm liable to be hit over the head for this, but I kinda feel bad for

some of the docs sometimes. They are sort of in the same boat as we are

here. They learn about disorders and how to trreat them based on research

that is done on the disorder, then they should be able to disseminate their

" wisdom " to us in the form of treatment.

Unfortunately, there is almost no research on vulvodynia and that which is

out there is mostly inconclusive for a cure because most of us have

different causes for our pain or a combination of causes. While docs

shouldn't work with such blinders on (looking for a " standard " symtpom), I

can see where it's easy for them to get frustrated as well.

We women should really form some kind of coalition to get a standard testing

format set up for women presenting with this condition. Included should be

things like hormonal imbalances, thyroid/endocrine problems, allergy, body

mechanics which can affect pelvic floor function.

Don't hurt me ladies, I only say this because I have been to some docs who

genuinely cared and wanted to help me but there just wasn't info enough.

They had to wisdom to send me on to docs who claimed to specialize in this

and because of that I feel the need to stand up for them. Sorry

Dusty

RE: RE: Sucess Story ( B.)

I think a link would be a great idea, and I am always willing to talk with

other women about my experience. I went through 8 years of fear and pain

before finding help. I can sympathise with the frustration at the doctors

office. My first doctor sent me to a psycologist for my problem and told me

it was a sexual identity issue. It is amazing how callous doctors can be,

especially when they are uneducated about the condition.

_________________________________________________________________

Don't just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

**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]

I know I'm liable to be hit over the head for this, but I kinda feel bad for

some of the docs sometimes. They are sort of in the same boat as we are

here. They learn about disorders and how to trreat them based on research

that is done on the disorder, then they should be able to disseminate their

" wisdom " to us in the form of treatment.

Unfortunately, there is almost no research on vulvodynia and that which is

out there is mostly inconclusive for a cure because most of us have

different causes for our pain or a combination of causes. While docs

shouldn't work with such blinders on (looking for a " standard " symtpom), I

can see where it's easy for them to get frustrated as well.

We women should really form some kind of coalition to get a standard testing

format set up for women presenting with this condition. Included should be

things like hormonal imbalances, thyroid/endocrine problems, allergy, body

mechanics which can affect pelvic floor function.

Don't hurt me ladies, I only say this because I have been to some docs who

genuinely cared and wanted to help me but there just wasn't info enough.

They had to wisdom to send me on to docs who claimed to specialize in this

and because of that I feel the need to stand up for them. Sorry

Dusty

RE: RE: Sucess Story ( B.)

I think a link would be a great idea, and I am always willing to talk with

other women about my experience. I went through 8 years of fear and pain

before finding help. I can sympathise with the frustration at the doctors

office. My first doctor sent me to a psycologist for my problem and told me

it was a sexual identity issue. It is amazing how callous doctors can be,

especially when they are uneducated about the condition.

_________________________________________________________________

Don't just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

**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]

I know I'm liable to be hit over the head for this, but I kinda feel bad for

some of the docs sometimes. They are sort of in the same boat as we are

here. They learn about disorders and how to trreat them based on research

that is done on the disorder, then they should be able to disseminate their

" wisdom " to us in the form of treatment.

Unfortunately, there is almost no research on vulvodynia and that which is

out there is mostly inconclusive for a cure because most of us have

different causes for our pain or a combination of causes. While docs

shouldn't work with such blinders on (looking for a " standard " symtpom), I

can see where it's easy for them to get frustrated as well.

We women should really form some kind of coalition to get a standard testing

format set up for women presenting with this condition. Included should be

things like hormonal imbalances, thyroid/endocrine problems, allergy, body

mechanics which can affect pelvic floor function.

Don't hurt me ladies, I only say this because I have been to some docs who

genuinely cared and wanted to help me but there just wasn't info enough.

They had to wisdom to send me on to docs who claimed to specialize in this

and because of that I feel the need to stand up for them. Sorry

Dusty

RE: RE: Sucess Story ( B.)

I think a link would be a great idea, and I am always willing to talk with

other women about my experience. I went through 8 years of fear and pain

before finding help. I can sympathise with the frustration at the doctors

office. My first doctor sent me to a psycologist for my problem and told me

it was a sexual identity issue. It is amazing how callous doctors can be,

especially when they are uneducated about the condition.

_________________________________________________________________

Don't just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

**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]

Dusty,

Don't duck, I'm not aiming at you! The thing that

frustrates me is not so much the dr.s presumption of

infailability but the distance and practice of

protocol.

My GP is actually probably the person I should be

going to - except he's a he and I know him socially,

so I started with a gyn and then a specialist - and

neither of them really seem to THINK about what they

are doing. The Gyn kind of wished I would go away, so

I did. The specialist is quite cheerful and

understands that my body does not process pain

correctly, but she pretty much dumps all the

communications on the nurse practitioner and that

first visit cost something like $600 (insurance, but

it still costs somebody) - and had nothing in mind to

try other than the rinse your underwear twice and use

olive oil routine - I had already done most of the

protocol, but now am repeating it for six weeks before

we do more - so I asked about 5 or 6 things on a list

I'd made up from this site - and she said, yes, okay,

which one do you want to try? I was HOPING she'd pick

for me, and help me know what suits my particular

condition most closely, since she has seen other women

with vulvodynia, but she cheerfully insisted I choose.

The first thing we did made me worse. We are on # 2,

Cymbalta, which she has never prescribed before - and

she has given me way too large a dose, pulled me off

(after15 years of) Trazadone very quickly (I told her

about the research indicating possible conflicts) and

now the NP is trying to help me decide when I've had

enough insomnia to take a different track.

My GP would have wanted to stay in closer touch and

would have done research for me and would NEVER have

left me trying huge doses of something new without

better support.

--- Dusty wrote:

> I know I'm liable to be hit over the head for this,

> but I kinda feel bad for

> some of the docs sometimes. They are sort of in

> the same boat as we are

> here. They learn about disorders and how to trreat

> them based on research

> that is done on the disorder, then they should be

> able to disseminate their

> " wisdom " to us in the form of treatment.

>

> Unfortunately, there is almost no research on

> vulvodynia and that which is

> out there is mostly inconclusive for a cure because

> most of us have

> different causes for our pain or a combination of

> causes. While docs

> shouldn't work with such blinders on (looking for a

> " standard " symtpom), I

> can see where it's easy for them to get frustrated

> as well.

>

> We women should really form some kind of coalition

> to get a standard testing

> format set up for women presenting with this

> condition. Included should be

> things like hormonal imbalances, thyroid/endocrine

> problems, allergy, body

> mechanics which can affect pelvic floor function.

>

> Don't hurt me ladies, I only say this because I have

> been to some docs who

> genuinely cared and wanted to help me but there just

> wasn't info enough.

> They had to wisdom to send me on to docs who claimed

> to specialize in this

> and because of that I feel the need to stand up for

> them. Sorry

>

> Dusty

>

>

>

>

> RE: RE: Sucess Story ( B.)

>

>

> I think a link would be a great idea, and I am

> always willing to talk with

> other women about my experience. I went through 8

> years of fear and pain

> before finding help. I can sympathise with the

> frustration at the doctors

> office. My first doctor sent me to a psycologist

> for my problem and told me

>

> it was a sexual identity issue. It is amazing how

> callous doctors can be,

> especially when they are uneducated about the

> condition.

>

>

>

>

_________________________________________________________________

> Don't just search. Find. Check out the new MSN

> Search!

>

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

>

>

>

>

> **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]

Dusty,

Don't duck, I'm not aiming at you! The thing that

frustrates me is not so much the dr.s presumption of

infailability but the distance and practice of

protocol.

My GP is actually probably the person I should be

going to - except he's a he and I know him socially,

so I started with a gyn and then a specialist - and

neither of them really seem to THINK about what they

are doing. The Gyn kind of wished I would go away, so

I did. The specialist is quite cheerful and

understands that my body does not process pain

correctly, but she pretty much dumps all the

communications on the nurse practitioner and that

first visit cost something like $600 (insurance, but

it still costs somebody) - and had nothing in mind to

try other than the rinse your underwear twice and use

olive oil routine - I had already done most of the

protocol, but now am repeating it for six weeks before

we do more - so I asked about 5 or 6 things on a list

I'd made up from this site - and she said, yes, okay,

which one do you want to try? I was HOPING she'd pick

for me, and help me know what suits my particular

condition most closely, since she has seen other women

with vulvodynia, but she cheerfully insisted I choose.

The first thing we did made me worse. We are on # 2,

Cymbalta, which she has never prescribed before - and

she has given me way too large a dose, pulled me off

(after15 years of) Trazadone very quickly (I told her

about the research indicating possible conflicts) and

now the NP is trying to help me decide when I've had

enough insomnia to take a different track.

My GP would have wanted to stay in closer touch and

would have done research for me and would NEVER have

left me trying huge doses of something new without

better support.

--- Dusty wrote:

> I know I'm liable to be hit over the head for this,

> but I kinda feel bad for

> some of the docs sometimes. They are sort of in

> the same boat as we are

> here. They learn about disorders and how to trreat

> them based on research

> that is done on the disorder, then they should be

> able to disseminate their

> " wisdom " to us in the form of treatment.

>

> Unfortunately, there is almost no research on

> vulvodynia and that which is

> out there is mostly inconclusive for a cure because

> most of us have

> different causes for our pain or a combination of

> causes. While docs

> shouldn't work with such blinders on (looking for a

> " standard " symtpom), I

> can see where it's easy for them to get frustrated

> as well.

>

> We women should really form some kind of coalition

> to get a standard testing

> format set up for women presenting with this

> condition. Included should be

> things like hormonal imbalances, thyroid/endocrine

> problems, allergy, body

> mechanics which can affect pelvic floor function.

>

> Don't hurt me ladies, I only say this because I have

> been to some docs who

> genuinely cared and wanted to help me but there just

> wasn't info enough.

> They had to wisdom to send me on to docs who claimed

> to specialize in this

> and because of that I feel the need to stand up for

> them. Sorry

>

> Dusty

>

>

>

>

> RE: RE: Sucess Story ( B.)

>

>

> I think a link would be a great idea, and I am

> always willing to talk with

> other women about my experience. I went through 8

> years of fear and pain

> before finding help. I can sympathise with the

> frustration at the doctors

> office. My first doctor sent me to a psycologist

> for my problem and told me

>

> it was a sexual identity issue. It is amazing how

> callous doctors can be,

> especially when they are uneducated about the

> condition.

>

>

>

>

_________________________________________________________________

> Don't just search. Find. Check out the new MSN

> Search!

>

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

>

>

>

>

> **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]

Dusty,

Don't duck, I'm not aiming at you! The thing that

frustrates me is not so much the dr.s presumption of

infailability but the distance and practice of

protocol.

My GP is actually probably the person I should be

going to - except he's a he and I know him socially,

so I started with a gyn and then a specialist - and

neither of them really seem to THINK about what they

are doing. The Gyn kind of wished I would go away, so

I did. The specialist is quite cheerful and

understands that my body does not process pain

correctly, but she pretty much dumps all the

communications on the nurse practitioner and that

first visit cost something like $600 (insurance, but

it still costs somebody) - and had nothing in mind to

try other than the rinse your underwear twice and use

olive oil routine - I had already done most of the

protocol, but now am repeating it for six weeks before

we do more - so I asked about 5 or 6 things on a list

I'd made up from this site - and she said, yes, okay,

which one do you want to try? I was HOPING she'd pick

for me, and help me know what suits my particular

condition most closely, since she has seen other women

with vulvodynia, but she cheerfully insisted I choose.

The first thing we did made me worse. We are on # 2,

Cymbalta, which she has never prescribed before - and

she has given me way too large a dose, pulled me off

(after15 years of) Trazadone very quickly (I told her

about the research indicating possible conflicts) and

now the NP is trying to help me decide when I've had

enough insomnia to take a different track.

My GP would have wanted to stay in closer touch and

would have done research for me and would NEVER have

left me trying huge doses of something new without

better support.

--- Dusty wrote:

> I know I'm liable to be hit over the head for this,

> but I kinda feel bad for

> some of the docs sometimes. They are sort of in

> the same boat as we are

> here. They learn about disorders and how to trreat

> them based on research

> that is done on the disorder, then they should be

> able to disseminate their

> " wisdom " to us in the form of treatment.

>

> Unfortunately, there is almost no research on

> vulvodynia and that which is

> out there is mostly inconclusive for a cure because

> most of us have

> different causes for our pain or a combination of

> causes. While docs

> shouldn't work with such blinders on (looking for a

> " standard " symtpom), I

> can see where it's easy for them to get frustrated

> as well.

>

> We women should really form some kind of coalition

> to get a standard testing

> format set up for women presenting with this

> condition. Included should be

> things like hormonal imbalances, thyroid/endocrine

> problems, allergy, body

> mechanics which can affect pelvic floor function.

>

> Don't hurt me ladies, I only say this because I have

> been to some docs who

> genuinely cared and wanted to help me but there just

> wasn't info enough.

> They had to wisdom to send me on to docs who claimed

> to specialize in this

> and because of that I feel the need to stand up for

> them. Sorry

>

> Dusty

>

>

>

>

> RE: RE: Sucess Story ( B.)

>

>

> I think a link would be a great idea, and I am

> always willing to talk with

> other women about my experience. I went through 8

> years of fear and pain

> before finding help. I can sympathise with the

> frustration at the doctors

> office. My first doctor sent me to a psycologist

> for my problem and told me

>

> it was a sexual identity issue. It is amazing how

> callous doctors can be,

> especially when they are uneducated about the

> condition.

>

>

>

>

_________________________________________________________________

> Don't just search. Find. Check out the new MSN

> Search!

>

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

>

>

>

>

> **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 Dusty.

No 'boinks' on the head at all for your understanding from the physicians point of view.

I too agree and have met some compassionate ones who sincerely want to help but are as frustrated as us. When we think about it it's rare for a doctor to have the kind of time an individual would when seeking information about our specific problem.

Who better than the educated intelligent patient that knows so many more specifics of their own condition... it's when they just won't even consider what we have to say or even discuss it that frustrates me. Some are good at that but many aren't. *sigh*

I think we all know that we can't judge them collectively but individually and I think what we hear are the gripes and complaints only because we're 'not' made well so it's natural. Those who do have good doctors get well and move on so naturally we don't hear too much about those.

Like the saying goes, "Trust in God but tie up your camel" so we put trust in our doctors but always cover our arse (by researching) just in case. We all know of 'mistakes' made and worse so well worth the double check.

Your idea of:

<We women should really form some kind of coalition to get a standard testing format set up for women presenting with this condition. Included should be things like hormonal imbalances, thyroid/endocrine problems, allergy, body mechanics which can affect pelvic floor function>

is a good one but sincerely doubt any physician is going to employ it but it would be a good idea for the patient to be aware and suggest ruling out those things one by one, if a physician will consider them in the first. place.

Dee~

PS.....I loved your line "I approached it like I was solving the murder of the century" Indeed that's how I felt as well and left no stone unturned.

[Guest guest]

HI Dusty.

No 'boinks' on the head at all for your understanding from the physicians point of view.

I too agree and have met some compassionate ones who sincerely want to help but are as frustrated as us. When we think about it it's rare for a doctor to have the kind of time an individual would when seeking information about our specific problem.

Who better than the educated intelligent patient that knows so many more specifics of their own condition... it's when they just won't even consider what we have to say or even discuss it that frustrates me. Some are good at that but many aren't. *sigh*

I think we all know that we can't judge them collectively but individually and I think what we hear are the gripes and complaints only because we're 'not' made well so it's natural. Those who do have good doctors get well and move on so naturally we don't hear too much about those.

Like the saying goes, "Trust in God but tie up your camel" so we put trust in our doctors but always cover our arse (by researching) just in case. We all know of 'mistakes' made and worse so well worth the double check.

Your idea of:

<We women should really form some kind of coalition to get a standard testing format set up for women presenting with this condition. Included should be things like hormonal imbalances, thyroid/endocrine problems, allergy, body mechanics which can affect pelvic floor function>

is a good one but sincerely doubt any physician is going to employ it but it would be a good idea for the patient to be aware and suggest ruling out those things one by one, if a physician will consider them in the first. place.

Dee~

PS.....I loved your line "I approached it like I was solving the murder of the century" Indeed that's how I felt as well and left no stone unturned.

[Guest guest]

HI Dusty.

No 'boinks' on the head at all for your understanding from the physicians point of view.

I too agree and have met some compassionate ones who sincerely want to help but are as frustrated as us. When we think about it it's rare for a doctor to have the kind of time an individual would when seeking information about our specific problem.

Who better than the educated intelligent patient that knows so many more specifics of their own condition... it's when they just won't even consider what we have to say or even discuss it that frustrates me. Some are good at that but many aren't. *sigh*

I think we all know that we can't judge them collectively but individually and I think what we hear are the gripes and complaints only because we're 'not' made well so it's natural. Those who do have good doctors get well and move on so naturally we don't hear too much about those.

Like the saying goes, "Trust in God but tie up your camel" so we put trust in our doctors but always cover our arse (by researching) just in case. We all know of 'mistakes' made and worse so well worth the double check.

Your idea of:

<We women should really form some kind of coalition to get a standard testing format set up for women presenting with this condition. Included should be things like hormonal imbalances, thyroid/endocrine problems, allergy, body mechanics which can affect pelvic floor function>

is a good one but sincerely doubt any physician is going to employ it but it would be a good idea for the patient to be aware and suggest ruling out those things one by one, if a physician will consider them in the first. place.

Dee~

PS.....I loved your line "I approached it like I was solving the murder of the century" Indeed that's how I felt as well and left no stone unturned.

[Guest guest]

I know you're not aiming at me. I've had both kinds of docs you mention below too. Actually, you are one of the lucky ones. You have a doc who KNOWS she doesn't know..... and is willing to let you do whatever it takes to find your answer - and given that the very first couple of things I'd do is get hormone and thyroid tested - full panel for both. Of course, you'll probably have to tell her when in your cycle is the appropriate time to test!!!! You are right that she should pursue finding out herself, as she is the medical professional - but, hey - the truth is that docs are getting most of their info from us right now as we have banded together in groups to help one another. Until or unless there is research to back up what we are saying - they really ONLY have our experiences as a guide. Their own knowledge of medicine should prompt them to suggest some things and try to dissuade us from others, BUT we have become a band of rebels - telling docs what to do and refusing to be in pain anymore - so they don't quite know how to handle this new breed of patients.

Also, as in all fields, whether grocery store clerks, Post Office workers or Docs - some are good and some are not . Now is that because their intake training was inadequate or because they are lazy or because there is no precedent for them to base their actions on ? The truth is it is all of these. Some people have lousy intake training, and some people are just plain lazy and docs right now don't have any reliable research to fall back on to help us. Their treatment protocols are the result of valid research and testing of protocols for results. They have none of that for us - and I guess their (the good ones) pulling their hair out just like us and ready to give you anything, try anything to make it stop hurting.

That being said - knowing my GP socially wouldn't stop me from either using him or getting HIS opinion on the best person to see. Go to him - tell him what you have been going through - let him know what you'd like to try based on your support group's success with a given treatment. You may be missing the one person who could solve the mystery or part of it for you?

Honestly, McTwirly ( right?) there are some damned dumb docs out there - but for the ones who really are interested in their profession and in helping people it must be frustrating that research and treatment protocols being established are so slow in coming.

If you decide not to use your GP, Get that lady doc to test you for anything you can you can think and to prescribe Estrace, as a trial for about 2 months or so. Come to the list for starting prescribing advice before you ask her for it.

Dusty

RE: RE: Sucess Story ( B.)> > > I think a link would be a great idea, and I am> always willing to talk with > other women about my experience. I went through 8> years of fear and pain > before finding help. I can sympathise with the> frustration at the doctors > office. My first doctor sent me to a psycologist> for my problem and told me> > it was a sexual identity issue. It is amazing how> callous doctors can be, > especially when they are uneducated about the> condition.> > > >__________________________________________________________> Don't just search. Find. Check out the new MSN> Search! >http://search.msn.click-url.com/go/onm00200636ave/direct/01/> > > > > **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]

I know you're not aiming at me. I've had both kinds of docs you mention below too. Actually, you are one of the lucky ones. You have a doc who KNOWS she doesn't know..... and is willing to let you do whatever it takes to find your answer - and given that the very first couple of things I'd do is get hormone and thyroid tested - full panel for both. Of course, you'll probably have to tell her when in your cycle is the appropriate time to test!!!! You are right that she should pursue finding out herself, as she is the medical professional - but, hey - the truth is that docs are getting most of their info from us right now as we have banded together in groups to help one another. Until or unless there is research to back up what we are saying - they really ONLY have our experiences as a guide. Their own knowledge of medicine should prompt them to suggest some things and try to dissuade us from others, BUT we have become a band of rebels - telling docs what to do and refusing to be in pain anymore - so they don't quite know how to handle this new breed of patients.

Also, as in all fields, whether grocery store clerks, Post Office workers or Docs - some are good and some are not . Now is that because their intake training was inadequate or because they are lazy or because there is no precedent for them to base their actions on ? The truth is it is all of these. Some people have lousy intake training, and some people are just plain lazy and docs right now don't have any reliable research to fall back on to help us. Their treatment protocols are the result of valid research and testing of protocols for results. They have none of that for us - and I guess their (the good ones) pulling their hair out just like us and ready to give you anything, try anything to make it stop hurting.

That being said - knowing my GP socially wouldn't stop me from either using him or getting HIS opinion on the best person to see. Go to him - tell him what you have been going through - let him know what you'd like to try based on your support group's success with a given treatment. You may be missing the one person who could solve the mystery or part of it for you?

Honestly, McTwirly ( right?) there are some damned dumb docs out there - but for the ones who really are interested in their profession and in helping people it must be frustrating that research and treatment protocols being established are so slow in coming.

If you decide not to use your GP, Get that lady doc to test you for anything you can you can think and to prescribe Estrace, as a trial for about 2 months or so. Come to the list for starting prescribing advice before you ask her for it.

Dusty

RE: RE: Sucess Story ( B.)> > > I think a link would be a great idea, and I am> always willing to talk with > other women about my experience. I went through 8> years of fear and pain > before finding help. I can sympathise with the> frustration at the doctors > office. My first doctor sent me to a psycologist> for my problem and told me> > it was a sexual identity issue. It is amazing how> callous doctors can be, > especially when they are uneducated about the> condition.> > > >__________________________________________________________> Don't just search. Find. Check out the new MSN> Search! >http://search.msn.click-url.com/go/onm00200636ave/direct/01/> > > > > **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]

I know you're not aiming at me. I've had both kinds of docs you mention below too. Actually, you are one of the lucky ones. You have a doc who KNOWS she doesn't know..... and is willing to let you do whatever it takes to find your answer - and given that the very first couple of things I'd do is get hormone and thyroid tested - full panel for both. Of course, you'll probably have to tell her when in your cycle is the appropriate time to test!!!! You are right that she should pursue finding out herself, as she is the medical professional - but, hey - the truth is that docs are getting most of their info from us right now as we have banded together in groups to help one another. Until or unless there is research to back up what we are saying - they really ONLY have our experiences as a guide. Their own knowledge of medicine should prompt them to suggest some things and try to dissuade us from others, BUT we have become a band of rebels - telling docs what to do and refusing to be in pain anymore - so they don't quite know how to handle this new breed of patients.

Also, as in all fields, whether grocery store clerks, Post Office workers or Docs - some are good and some are not . Now is that because their intake training was inadequate or because they are lazy or because there is no precedent for them to base their actions on ? The truth is it is all of these. Some people have lousy intake training, and some people are just plain lazy and docs right now don't have any reliable research to fall back on to help us. Their treatment protocols are the result of valid research and testing of protocols for results. They have none of that for us - and I guess their (the good ones) pulling their hair out just like us and ready to give you anything, try anything to make it stop hurting.

That being said - knowing my GP socially wouldn't stop me from either using him or getting HIS opinion on the best person to see. Go to him - tell him what you have been going through - let him know what you'd like to try based on your support group's success with a given treatment. You may be missing the one person who could solve the mystery or part of it for you?

Honestly, McTwirly ( right?) there are some damned dumb docs out there - but for the ones who really are interested in their profession and in helping people it must be frustrating that research and treatment protocols being established are so slow in coming.

If you decide not to use your GP, Get that lady doc to test you for anything you can you can think and to prescribe Estrace, as a trial for about 2 months or so. Come to the list for starting prescribing advice before you ask her for it.

Dusty

RE: RE: Sucess Story ( B.)> > > I think a link would be a great idea, and I am> always willing to talk with > other women about my experience. I went through 8> years of fear and pain > before finding help. I can sympathise with the> frustration at the doctors > office. My first doctor sent me to a psycologist> for my problem and told me> > it was a sexual identity issue. It is amazing how> callous doctors can be, > especially when they are uneducated about the> condition.> > > >__________________________________________________________> Don't just search. Find. Check out the new MSN> Search! >http://search.msn.click-url.com/go/onm00200636ave/direct/01/> > > > > **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]

I did go to the GP one day in tears - and tell him it

was 2 months till the next scheduled gyn visit and

would he please do some tests - I had a list - we

chose two, the ANA test and the oxalate test - neither

came up with anything. Then I had the gyn visit and

biopsy and yaddah yaddah and the gyn sent me on to the

specialist - the GP said if I did not get what I

needed to come back - but he didn't want to jump in to

coordinate my care until I felt I was finished, not in

the middle of the appts with the gyn - I will see this

through with the specialist for a while, but it is

probably counter productive to have the tests done

there where it is far from home and much more

expensive... I just thought she'd have a better filter

of experience to help sort through it. Maybe she will.

Maybe they just needed to be sure I followed their

" healing " protocol for 6 weeks. You have given me a

good idea, which is to share with the specialist that

the routine tests could more easily be done here...

rather than tie up her setting .... perhaps we can

coordinate it that way. I don't want to insult her,

but I do want to either know WHY we wait or to be

moving ahead.

Do you think the Estrace is more effective than the

Vagifem (also bioidentical, a tiny tablet inserted

vaginally, estradioil)? I'm using that every other

night. Of course, it doesn't go right on the

dermatitis like a cream would. It goes into the

vaginal tissues.

I'll ask about it.

The NP says my newest round of drug (Cymbalta) will

kill off the extra proliferation of new nerves firing

pain and it is short term, not a long term thing. But

I'm afraid my poor liver is in danger - I'm also on

Fosamax and have been on Trazadone. And... will it

kill off ALL the nerves in the vulvar area?? Dim all

sensations?/

She says the derm is going to heal itself if I just be

patient. I have my doubts. I've already been on

Clobetesol.

-J McT

--- Dusty wrote:

> I know you're not aiming at me. I've had both kinds

> of docs you mention

> below too. Actually, you are one of the lucky

> ones. You have a doc who

> KNOWS she doesn't know..... and is willing to let

> you do whatever it takes

> to find your answer - and given that the very first

> couple of things I'd do

> is get hormone and thyroid tested - full panel for

> both. Of course, you'll

> probably have to tell her when in your cycle is the

> appropriate time to

> test!!!! You are right that she should pursue

> finding out herself, as

> she is the medical professional - but, hey - the

> truth is that docs are

> getting most of their info from us right now as we

> have banded together in

> groups to help one another. Until or unless there

> is research to back up

> what we are saying - they really ONLY have our

> experiences as a guide.

> Their own knowledge of medicine should prompt them

> to suggest some things

> and try to dissuade us from others, BUT we have

> become a band of rebels -

> telling docs what to do and refusing to be in pain

> anymore - so they don't

> quite know how to handle this new breed of patients.

>

> Also, as in all fields, whether grocery store

> clerks, Post Office workers or

> Docs - some are good and some are not . Now is

> that because their intake

> training was inadequate or because they are lazy or

> because there is no

> precedent for them to base their actions on ? The

> truth is it is all of

> these. Some people have lousy intake training, and

> some people are just

> plain lazy and docs right now don't have any

> reliable research to fall back

> on to help us. Their treatment protocols are the

> result of valid research

> and testing of protocols for results. They have

> none of that for us - and

> I guess their (the good ones) pulling their hair out

> just like us and ready

> to give you anything, try anything to make it stop

> hurting.

>

> That being said - knowing my GP socially wouldn't

> stop me from either using

> him or getting HIS opinion on the best person to

> see. Go to him - tell him

> what you have been going through - let him know what

> you'd like to try based

> on your support group's success with a given

> treatment. You may be missing

> the one person who could solve the mystery or part

> of it for you?

>

> Honestly, McTwirly ( right?) there are some

> damned dumb docs out there

> - but for the ones who really are interested in

> their profession and in

> helping people it must be frustrating that research

> and treatment protocols

> being established are so slow in coming.

>

> If you decide not to use your GP, Get that lady doc

> to test you for anything

> you can you can think and to prescribe Estrace, as a

> trial for about 2

> months or so. Come to the list for starting

> prescribing advice before you

> ask her for it.

>

> Dusty

> RE: RE: Sucess Story ( B.)

>

>

>

> Dusty,

> Don't duck, I'm not aiming at you! The thing that

> frustrates me is not so much the dr.s presumption of

> infailability but the distance and practice of

> protocol.

> My GP is actually probably the person I should be

> going to - except he's a he and I know him socially,

> so I started with a gyn and then a specialist - and

> neither of them really seem to THINK about what they

> are doing. The Gyn kind of wished I would go away,

> so

> I did. The specialist is quite cheerful and

> understands that my body does not process pain

> correctly, but she pretty much dumps all the

> communications on the nurse practitioner and that

> first visit cost something like $600 (insurance, but

> it still costs somebody) - and had nothing in mind

> to

> try other than the rinse your underwear twice and

> use

> olive oil routine - I had already done most of the

> protocol, but now am repeating it for six weeks

> before

> we do more - so I asked about 5 or 6 things on a

> list

> I'd made up from this site - and she said, yes,

> okay,

> which one do you want to try? I was HOPING she'd

> pick

> for me, and help me know what suits my particular

> condition most closely, since she has seen other

> women

> with vulvodynia, but she cheerfully insisted I

> choose.

> The first thing we did made me worse. We are on # 2,

> Cymbalta, which she has never prescribed before -

> and

> she has given me way too large a dose, pulled me off

> (after15 years of) Trazadone very quickly (I told

> her

> about the research indicating possible conflicts)

> and

> now the NP is trying to help me decide when I've had

> enough insomnia to take a different track.

>

> My GP would have wanted to stay in closer touch and

> would have done research for me and would NEVER have

> left me trying huge doses of something new without

> better support.

>

> --- Dusty <dustybrookehurst (DOT)

> <mailto:dusty%40brookehurst.net> net>

> wrote:

>

> > I know I'm liable to be hit over the head for

> this,

> > but I kinda feel bad for

> > some of the docs sometimes. They are sort of in

> > the same boat as we are

> > here. They learn about disorders and how to trreat

> > them based on research

> > that is done on the disorder, then they should be

> > able to disseminate their

> > " wisdom " to us in the form of treatment.

> >

> > Unfortunately, there is almost no research on

> > vulvodynia and that which is

> > out there is mostly inconclusive for a cure

> because

> > most of us have

> > different causes for our pain or a combination of

> > causes. While docs

> > shouldn't work with such blinders on (looking for

> a

> > " standard " symtpom), I

> > can see where it's easy for them to get frustrated

> > as well.

> >

> > We women should really form some kind of coalition

> > to get a standard testing

> > format set up for women presenting with this

> > condition. Included should be

> > things like hormonal imbalances, thyroid/endocrine

> > problems, allergy, body

> > mechanics which can affect pelvic floor function.

> >

> > Don't hurt me ladies, I only say this because I

> have

> > been to some docs who

> > genuinely cared and wanted to help me but there

> just

> > wasn't info enough.

> > They had to wisdom to send me on to docs who

> claimed

> > to specialize in this

> > and because of that I feel the need to stand up

> for

> > them. Sorry

> >

> > Dusty

> >

> >

> >

> >

> > -----Original Message-----

> > From: VulvarDisorders@

> <mailto:VulvarDisorders%40yahoogroups.com>

> yahoogroups.com

> > [mailto:VulvarDisorders@

> <mailto:VulvarDisorders%40yahoogroups.com>

> yahoogroups.com] On Behalf

> > Of Bunny

>

=== message truncated ===

__________________________________________________

[Guest guest]

I know how frustrating it can be when doctors run out of ideas. I have had

several doctors that have reached that point with me (and not just with vvs

either). Its a sign of a good doctor who admits that he/she does not know

and an even better one if they are willing to listen you your research and

try something they have not thought of. Furstrating if you were hopeing for

a little guideance and are trying something potentially dangerous, but nice

if you want to just go ahead and try a few things with a professional

keeping tabs on things. Best wishes, I hope you find what works or a better

doctor.

Bunny

Reply-To: VulvarDisorders

To: VulvarDisorders

Subject: RE: RE: Sucess Story ( B.)

Date: Mon, 10 Jul 2006 12:58:52 -0700 (PDT)

Dusty,

Don't duck, I'm not aiming at you! The thing that

frustrates me is not so much the dr.s presumption of

infailability but the distance and practice of

protocol.

My GP is actually probably the person I should be

going to - except he's a he and I know him socially,

so I started with a gyn and then a specialist - and

neither of them really seem to THINK about what they

are doing. The Gyn kind of wished I would go away, so

I did. The specialist is quite cheerful and

understands that my body does not process pain

correctly, but she pretty much dumps all the

communications on the nurse practitioner and that

first visit cost something like $600 (insurance, but

it still costs somebody) - and had nothing in mind to

try other than the rinse your underwear twice and use

olive oil routine - I had already done most of the

protocol, but now am repeating it for six weeks before

we do more - so I asked about 5 or 6 things on a list

I'd made up from this site - and she said, yes, okay,

which one do you want to try? I was HOPING she'd pick

for me, and help me know what suits my particular

condition most closely, since she has seen other women

with vulvodynia, but she cheerfully insisted I choose.

The first thing we did made me worse. We are on # 2,

Cymbalta, which she has never prescribed before - and

she has given me way too large a dose, pulled me off

(after15 years of) Trazadone very quickly (I told her

about the research indicating possible conflicts) and

now the NP is trying to help me decide when I've had

enough insomnia to take a different track.

My GP would have wanted to stay in closer touch and

would have done research for me and would NEVER have

left me trying huge doses of something new without

better support.

--- Dusty wrote:

> I know I'm liable to be hit over the head for this,

> but I kinda feel bad for

> some of the docs sometimes. They are sort of in

> the same boat as we are

> here. They learn about disorders and how to trreat

> them based on research

> that is done on the disorder, then they should be

> able to disseminate their

> " wisdom " to us in the form of treatment.

>

> Unfortunately, there is almost no research on

> vulvodynia and that which is

> out there is mostly inconclusive for a cure because

> most of us have

> different causes for our pain or a combination of

> causes. While docs

> shouldn't work with such blinders on (looking for a

> " standard " symtpom), I

> can see where it's easy for them to get frustrated

> as well.

>

> We women should really form some kind of coalition

> to get a standard testing

> format set up for women presenting with this

> condition. Included should be

> things like hormonal imbalances, thyroid/endocrine

> problems, allergy, body

> mechanics which can affect pelvic floor function.

>

> Don't hurt me ladies, I only say this because I have

> been to some docs who

> genuinely cared and wanted to help me but there just

> wasn't info enough.

> They had to wisdom to send me on to docs who claimed

> to specialize in this

> and because of that I feel the need to stand up for

> them. Sorry

>

> Dusty

>

>

>

>

> RE: RE: Sucess Story ( B.)

>

>

> I think a link would be a great idea, and I am

> always willing to talk with

> other women about my experience. I went through 8

> years of fear and pain

> before finding help. I can sympathise with the

> frustration at the doctors

> office. My first doctor sent me to a psycologist

> for my problem and told me

>

> it was a sexual identity issue. It is amazing how

> callous doctors can be,

> especially when they are uneducated about the

> condition.

>

>

>

>

_________________________________________________________________

> Don't just search. Find. Check out the new MSN

> Search!

>

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

>

>

>

>

> **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]

Dusty,

I too sympathise some for the doctors, especially when they are honest

enough to admit they don't know. It is only when doctors get defensive or

angry or start blaming the patient for not being right out of the text book

that I lose that sympathy.

Bunny

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Hi there,

My Specialist had me use both vagifem and estrace cream. Eventually the

idea was to gradually go down to just needing the estrace cream and

occasional Temovate (I use it after intercourse if needed).

When I saw my specialist she had me do 3 months with my estrace cream and

vagifem alone, then she did 6 months with estrace cream, vagifem, and

Temovate and added zoloft. I saw improvement but not enough so we did the

surgery (vulvar vestibulectomy). Then we weaned off of zoloft, temovate and

the vagifem. Now I use estrace preventitavely and Temovate as needed after

intercourse (which I rarely need). I still have access to a Vagifem rx but

only needed it right after pregnancy and during fertility treatment to have

my daughter.

I guess I am sharing this because at first I too was frustrated with how

long they wanted me to go throught their proticol before moving on to the

next leval but the reason for it was that it took time to heal the tissue

and they wanted to give my tissue plenty of time before resorting to surgery

(which I eventually ended up doing with success).

Bunny

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/