Re: cures for vulvar vestibulitis

[Guest guest]

Hi Heidi,

Your overview was helpful except I believe there is a cure. It might not be

the same cure for all cases, but something has to work if you keep trying.

If not, maybe time alone is a cure.

My doctor says most women have been cured through one of the therapies you

described. Dr. Galzer says biofeedback cures 50% and significantly reduces

pain for 80%. The vulvar pain foundation says that the diet with citrate

cures about 70%. Many doctors just believe that Elavil and time can get rid

of the symptoms.

So a better way to think of it is that while there is know universal cure,

there are possibly many cures out there. When you have pain 24/7 for months

and are completely disabled by it , the last thing we need to hear is " No

Cure " . We just have to look at the many cures Heidi described and know that

odds are that something will work.

Mathematically, suppose the cure rates are not even as high as the experts in

each theory say. Suppose they are as follows:

Biofeedback = 50%, Low oxalate/citrate =50%, Antidepressants = 40%,

Surgery = 50%, Yeasy Path = 30%

That implies that your odds of no cure are .5 x .5 x .6 x .5 x .7 = 5%.

So we all have to look at the bright side and know that most likely our cure

is out there.

Sincerely,

Sandi

[Guest guest]

Hi Friends,

I think that most of us, have not done any " ONE " thing at a time to try and

rid ourselves of VV. A lot of us, (myself included) have tried several

things at a time for relief, (i.e., I take 50 mgs. Tricyclics, along with

Calcium Citrate, Vitamin C, sporadic antifungals, etc.) The only problem

with this I see is that if we start to get relief, we are not really sure

which remedy is doing the trick and therefore, are afraid to stop any one

thing being used in combination that's bringing our relief.

When desperate for our " cures " it is hard not to fall into this trap. I

think that a lot of the time, it's going to probably take more than one

approach to put us on the right track. A combination different things seems

to have worked for me. This took LOTS of reading, research, Dr's, internet

e-mails, etc. etc. on my part. With each of our bodies/onsets being

different from each other, it's even harder to recommend exactly what might

do the trick for others! Piece by piece, we must put together our own

personal " cures " . We know our bodies best. I think there is SO much

frustration amongst a lot of us with the lack of knowledge about VV in the

medical professional community. Sometimes, the best approach is to be your

own advocate and NEVER GIVE UP HOPE!

I hope that SOON, may we all be pain/symptomatic free.....ONCE AND FOR ALL.

Remember, if you do give up...VV has won. You will never be " free " of this

monster if you quit trying to find your answers. Most of us weren't born

with this problem, so somewhere, must lie our answers. No matter what, keep

searching.

Two interesting other theories I have read about VV are the thoughts that VV

can be attributed to autoimmune disorders and/or peri and/or menopausal

related. I believe that SEVERAL things contribute to my own personal onset,

(I had Graves Disease an autoimmune disorder and am now hypothyroid) along

with reactions to antibiotics, which I had NEVER had in my 35 years until

Graves. I know of several gals who swear their onset was brought on by

perimenopause. So many possible onsets, makes it difficult at times to

figure out our own personal triggers.

The most important point I want EVERYONE to remember is.....Keep the faith,

no matter what. If you need to VENT, do it here. This is the best place for

emotional therapy. If we all share our successes, frustrations, etc. it can

go a long way in helping ourselves and helping others.

That's my two cents for now....I hope that I've made some sense!

Hugs to all,

Carla

[Guest guest]

Hi everyone,

I must say, some of the recent messages on the list have been *very

interesting.* a, I

applaude your candor and your sound caution in choosing treatments! We SHOULD

be free to speak our

minds. I hope no one's offended either if I choose to speak mine:

First of all, I think it's important to point out that while none of us seems to

be gullible enough

to believe that doctors are GODS (anymore?), the typical attitude of many

Americans is that,

basically, they ARE and should be respected as such (yes, that's a bit of an

exaggeration). What I

mean is (and I HAVE studied this and read a lot about it at a sociological

level), doctors have

almost taken the place of the priest in our culture! Think of that what you

will; I'm only offering

it as food for thought. I've met and heard of WAY too many women who barely

ever question a

doctor's methods, diagnoses, and treatment recommendations, even when it's for

something very

serious!! And since our condition is one that's pitifully under-researched, it

IS up to us to get

the ball rolling, stand up for ourselves, and question EVERYTHING. Medicine is

NOT a precise

science and the only real advances it's made in the last 50 or 100 years is with

penicillin and

trauma treatment--what we refer to as " heroic medicine. " Western medicine is

not that great with

handling chronic ailments of ANY sort! Also, there seems to be a very narrow

mindset with some

people (and many doctors) that drugs and surgery are the only " real " ways to

treat many health

problems, and that, of course is absolutely not true. We need to think about

how these doctors are

trained and to keep in mind that any school of science is subject to the same

societal biases that

the rest of the culture is, too. They *should* be neutral, but guess what

folks? They're HUMAN.

The same chauvanism, patronizing attitudes, and even mysogyny can exist within

the medical realm

just as it can in any other form of business. Yes, medicine is a business! I

used to work in a

hospital and I still know several doctors (my father-in-law being one). Just

try working in a

pathology lab for a year and you'd see the evidence right before your eyes that

most hysterectomies

are completely unnecessary, as are many mastectomies. Those comprised about 80%

of the specimens we

received at the lab (breast and uterine tissues). The rest were pap slides,

lung tissue, skin

samples, and any other body part that had been removed or " scraped " for

examination. And the

majority of all of the specimens were from women patients; samples from men

were, by contrast, few

and far between. Doesn't this say something??? ( " Yes. Women see doctors more

often because women

get pap smears, women get pregnant and have babies and get breast cancer and

endometriosis and.... "

....the list goes on) We women are wonderful money-makers for these doctors,

especially when so

many of us are naive enough not to question their methods! Let's try and think

for ourselves a

little more and not just blindly follow " doctor's orders. "

Now, the only other thing I wanted to mention is that the list of current,

available treatments for

vulvodynia didn't include guaifenisen (maybe because it's primarily for

fibromyalgia). Maybe it's

too new and it IS very controversial, but so are some of the other treatments

(i.e., low oxalate

approach), so let's not rule it out completely! Apparently, it's helped a

certain number of women

get out of pain, and that's not *nothing* in my book!! I also seriously

question the assessment

that surgery is the most successful treatment. I think it depends upon which

subset of vulvodynia a

woman presents with (gee, if they can even figure it out!). Even that

considered, any positive

effects won't last long if the underlying disorder is not identified and is

something that will

eventually catch up with them again. Also, surgery won't help pelvic muscle

problems, hormonal

imbalances, high urinary oxalates, and probably wouldn't help a yeast problem,

either! But like

Heidi said, it should only be reserved as a LAST resort. Surgery is a very

drastic approach to this

and not without possible complications or a risk of worsening the pain! I think

the belief that

surgery is " so successful " is just another by-product of this whole unfortunate

viewpoint of both

[much of] society and the medical community itself: In general, $urgery makes

money, and only

surgeons can perform surgery!!

Now to balance this, I need to add that there ARE doctors and other health

professionals who ARE on

our side, who are not only concerned with the dollar value of their career, and

who are completely

open to exploring other treatments for vulvodynia--obviously! I just think we

need MORE of those

kinds of professional people!!! And I was very happy to hear last year that the

NIH called for more

research on this, but I think they're about 50 years behind the times! But,

better late than never.

(read the history on the medical research for vulvodynia--it's very interesting)

What WE need to

do is keep it going and help it in any way we can! Oh, if ONLY I was a

doctor!!!!!!!!! Come to

think of it, why have we never heard of any doctors with this very

condition????? Has anyone?

Okay I guess I've let off enough steam for one day. Take care, everybody.

Hope you're all

feeling well.

Sincerely,

Gail

[Guest guest]

Hi Gail,

I whole-heartidly agreed with many points in your post. One of the main

reasons why I don't have 100% faith in Dr's is my experience of misdiagnosis

several times. I think that many of us VV sufferers are classic examples of

that! That is what brought us to the list in a lot of cases. Traditional

medicine has failed and we are desperately seeking at least some relief from

our symptoms and are looking for our final " cure " . I was told I was having

anxiety attacks after the birth of my third child, when actuality was in the

middle of Graves Disease and a major thyroid " storm " . I had all the classic

symptoms, high blood pressure, diarrhea, insommonia, frequent urination,

profuse sweating, etc. etc. I was lucky that this misdiagnosis did not

cost me my life as my " storm " raged for over 5 months, UNTREATED and

UNRECOGNIZED. My blood pressure during this time was running 190/110!

Also, the MAJOR knee surgery I just had...took 2 Dr's 7-1/2 hours to perform.

When " tacking " down the meniscual transplant the tack went ENTIRELY through

my bone and is now just underneath the surface of my skin, right where I bend

my knee and it is causing me much pain. My Ortho said this is only the 2nd

time since they have been doing this procedure that this has happened to a

patient. They are not sure as of yet what steps will be taken to correct

this error. Dr's are not human, they do make mistakes. You have to find one

that you are comfortable with that is willing to listen to ALL of your

complaints!

I guess the point I am trying to make is...sometimes you HAVE TO ASK

questions. If your Dr. gets upset with this, I would say time to find a new

Dr. We know our bodies best and we know when something's up. The medical

profession at times is to quick to make a hasty diagnosis so they can move on

to the next patient. Also, they are quick to prescribe med's quite often,

trying to find that " magic " pill cure for us. I have found that male Dr's

are more often the ones that " POO-POO " my concerns. I am speaking from my

own experiences over the years, so I don't know whether or not there are gals

on the list that agree and/or disagree with me. It is so VERY important to

have a Dr. that takes time and listens, really listens, to your problems. I

have found that women Dr's take much more time with me than the men,

especially in the GYN field.

Just my two cents worth of opinions!

Hugs!!

Carla

[Guest guest]

Sandy, I agree with you about cause for optimism!

I bet that when this condition gets really studied, they'll find that there

is more than one type of problem with more than one cause. We've all seen

the long lists of possible triggers. It makes sense that different cures

will work for different people.

[Guest guest]

>From: SandiSharp@...

>Reply-To: VulvarDisordersonelist

>To: VulvarDisordersonelist

>Subject: Re: " cures " for vulvar vestibulitis

>Date: Mon, 27 Sep 1999 08:31:21 EDT

>

>From: SandiSharp@...

>

>Hi Heidi,

>

>Your overview was helpful except I believe there is a cure. It might not

>be

>the same cure for all cases, but something has to work if you keep trying.

>If not, maybe time alone is a cure.

>

>My doctor says most women have been cured through one of the therapies you

>described. Dr. Galzer says biofeedback cures 50% and significantly reduces

>pain for 80%. The vulvar pain foundation says that the diet with citrate

>cures about 70%. Many doctors just believe that Elavil and time can get

>rid

>of the symptoms.

>

>So a better way to think of it is that while there is know universal cure,

>there are possibly many cures out there. When you have pain 24/7 for months

>and are completely disabled by it , the last thing we need to hear is " No

>Cure " . We just have to look at the many cures Heidi described and know

>that

>odds are that something will work.

>

>Mathematically, suppose the cure rates are not even as high as the experts

>in

>each theory say. Suppose they are as follows:

>Biofeedback = 50%, Low oxalate/citrate =50%, Antidepressants = 40%,

>Surgery = 50%, Yeasy Path = 30%

>

>That implies that your odds of no cure are .5 x .5 x .6 x .5 x .7 = 5%.

>

>So we all have to look at the bright side and know that most likely our

>cure

>is out there.

>

>Sincerely,

>Sandi

>

>

>>

[Guest guest]

Yes, I completely agree. We need to stay positive and remember that we are all

going to find our own individual cure.

e g wrote:

>

>

> >From: SandiSharp@...

> >Reply-To: VulvarDisordersonelist

> >To: VulvarDisordersonelist

> >Subject: Re: " cures " for vulvar vestibulitis

> >Date: Mon, 27 Sep 1999 08:31:21 EDT

> >

> >From: SandiSharp@...

> >

> >Hi Heidi,

> >

> >Your overview was helpful except I believe there is a cure. It might not

> >be

> >the same cure for all cases, but something has to work if you keep trying.

> >If not, maybe time alone is a cure.

> >

> >My doctor says most women have been cured through one of the therapies you

> >described. Dr. Galzer says biofeedback cures 50% and significantly reduces

> >pain for 80%. The vulvar pain foundation says that the diet with citrate

> >cures about 70%. Many doctors just believe that Elavil and time can get

> >rid

> >of the symptoms.

> >

> >So a better way to think of it is that while there is know universal cure,

> >there are possibly many cures out there. When you have pain 24/7 for months

> >and are completely disabled by it , the last thing we need to hear is " No

> >Cure " . We just have to look at the many cures Heidi described and know

> >that

> >odds are that something will work.

> >

> >Mathematically, suppose the cure rates are not even as high as the experts

> >in

> >each theory say. Suppose they are as follows:

> >Biofeedback = 50%, Low oxalate/citrate =50%, Antidepressants = 40%,

> >Surgery = 50%, Yeasy Path = 30%

> >

> >That implies that your odds of no cure are .5 x .5 x .6 x .5 x .7 = 5%.

> >

> >So we all have to look at the bright side and know that most likely our

> >cure

> >is out there.

> >

> >Sincerely,

> >Sandi

> >

> >

> >>