How do you know??

September 9, 2006

I was recently diagnosed with Vulvodynia, which I think is a bs

phrase used by doctors who really want to say, " I don't know why your

vagina is goozing(yes goozing) acidic discharge, and why it feels

like someone is putting out cigarettes between your legs "

Anyway, my main question is how dos one know that her itching is just

the normal vulvodynia, and not yeast or BV? I've had Glabrata in the

past, and for all I know it never cleared up with the Vfend, or that

its back. I never know when I should go back to the Dr. to be tested

for BV, YEAST, AND other diseases, becuase I'm ALWAYS burning!! I've

had BV before, without the odor, so theres no telling! My discharge

comes and goes, and can come in a diluted milky form, or a thicker

white pasty form. Should I simply go to the dr. every two weeks and

have him run tests? Should I prostitute myself to pay for tests every

two weeks? (joke) But seriously, If i continue to ignore potential

yeast and and other infections, couldn't I be making my condition

worse? But I can't afford to go every two weeks, and these drs would

just think I was crazy if i tried....right? I just don't know what to

do with myself. At what point will I be able to manage this illness

alone, without the " aid " of so called specialists.

I just took myself off of the noretriptaline, and am now on zoloft,

to help treat this...but something tells me that THERE must be a

medical cause for this illness...and that perhaps it is the HPV for

which i was treated and " cured " ...Yet, still my drs. insist that HPV

has no symptoms of this nature...I can't even consider sex because in

the last six weeks I havent had one pain free day and the last time I

had sex I developed some kind of tiny fever blister thingy...(tests

came back negative for warts and herpes..thank God)

September 9, 2006

HI , That is the million dollar question. Literally. My claims over this 10 years of chasing doctor to doctor must be close to that amount if you add up all the supplements, surgeries, office visits, alternative medicine visits, medication... Thank God for insurance. It is so easy for drs to just say vulvodynia b/c it sounds official. But when you ask what that means you find out it is Latin for vulvar pain. Well, duh, I knew that already. It reminds me of that FedEx commercial where the nerdy guy at a meeting had the money saving idea of opening an account on FedEx.com and no one listened but when the older man in a fancy suit used the appropriate hand gesture and said the same exact thing people thought he was a genious. What is the cause of v pain? No one knows and everyone is different. Which leaves the

patient to first try the standard treatments like PT, antidepressants, antihistamines, estrogen cream and all that other first line stuff and if that doesn't work one is SOL and left to find the cause on her own. That is where the nightmare gets even uglier and that is where I have been for so many years. I don't even need to know the cause exactly - just hit on the right treatment even if it is something like a nerve block. I am going to the Fibro and Fatigue Center and until last week I was having pretty good luck. My pain level went way down for the first time in 10 years. BUT it is back now and I am devastated. I had a stressful weekend with some family stuff, hurt my sacrum area by picking up sticks in the yard after Ernesto, and have finished my immunoglobulin shots - maybe they were helping. Anyway, I just hope I get to that level again and then improve more. Take care

and good luck! Love, Sandi

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September 9, 2006

HI , That is the million dollar question. Literally. My claims over this 10 years of chasing doctor to doctor must be close to that amount if you add up all the supplements, surgeries, office visits, alternative medicine visits, medication... Thank God for insurance. It is so easy for drs to just say vulvodynia b/c it sounds official. But when you ask what that means you find out it is Latin for vulvar pain. Well, duh, I knew that already. It reminds me of that FedEx commercial where the nerdy guy at a meeting had the money saving idea of opening an account on FedEx.com and no one listened but when the older man in a fancy suit used the appropriate hand gesture and said the same exact thing people thought he was a genious. What is the cause of v pain? No one knows and everyone is different. Which leaves the

patient to first try the standard treatments like PT, antidepressants, antihistamines, estrogen cream and all that other first line stuff and if that doesn't work one is SOL and left to find the cause on her own. That is where the nightmare gets even uglier and that is where I have been for so many years. I don't even need to know the cause exactly - just hit on the right treatment even if it is something like a nerve block. I am going to the Fibro and Fatigue Center and until last week I was having pretty good luck. My pain level went way down for the first time in 10 years. BUT it is back now and I am devastated. I had a stressful weekend with some family stuff, hurt my sacrum area by picking up sticks in the yard after Ernesto, and have finished my immunoglobulin shots - maybe they were helping. Anyway, I just hope I get to that level again and then improve more. Take care

and good luck! Love, Sandi

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

September 9, 2006

HI , That is the million dollar question. Literally. My claims over this 10 years of chasing doctor to doctor must be close to that amount if you add up all the supplements, surgeries, office visits, alternative medicine visits, medication... Thank God for insurance. It is so easy for drs to just say vulvodynia b/c it sounds official. But when you ask what that means you find out it is Latin for vulvar pain. Well, duh, I knew that already. It reminds me of that FedEx commercial where the nerdy guy at a meeting had the money saving idea of opening an account on FedEx.com and no one listened but when the older man in a fancy suit used the appropriate hand gesture and said the same exact thing people thought he was a genious. What is the cause of v pain? No one knows and everyone is different. Which leaves the

patient to first try the standard treatments like PT, antidepressants, antihistamines, estrogen cream and all that other first line stuff and if that doesn't work one is SOL and left to find the cause on her own. That is where the nightmare gets even uglier and that is where I have been for so many years. I don't even need to know the cause exactly - just hit on the right treatment even if it is something like a nerve block. I am going to the Fibro and Fatigue Center and until last week I was having pretty good luck. My pain level went way down for the first time in 10 years. BUT it is back now and I am devastated. I had a stressful weekend with some family stuff, hurt my sacrum area by picking up sticks in the yard after Ernesto, and have finished my immunoglobulin shots - maybe they were helping. Anyway, I just hope I get to that level again and then improve more. Take care

and good luck! Love, Sandi

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

September 9, 2006

HI , That is the million dollar question. Literally. My claims over this 10 years of chasing doctor to doctor must be close to that amount if you add up all the supplements, surgeries, office visits, alternative medicine visits, medication... Thank God for insurance. It is so easy for drs to just say vulvodynia b/c it sounds official. But when you ask what that means you find out it is Latin for vulvar pain. Well, duh, I knew that already. It reminds me of that FedEx commercial where the nerdy guy at a meeting had the money saving idea of opening an account on FedEx.com and no one listened but when the older man in a fancy suit used the appropriate hand gesture and said the same exact thing people thought he was a genious. What is the cause of v pain? No one knows and everyone is different. Which leaves the

patient to first try the standard treatments like PT, antidepressants, antihistamines, estrogen cream and all that other first line stuff and if that doesn't work one is SOL and left to find the cause on her own. That is where the nightmare gets even uglier and that is where I have been for so many years. I don't even need to know the cause exactly - just hit on the right treatment even if it is something like a nerve block. I am going to the Fibro and Fatigue Center and until last week I was having pretty good luck. My pain level went way down for the first time in 10 years. BUT it is back now and I am devastated. I had a stressful weekend with some family stuff, hurt my sacrum area by picking up sticks in the yard after Ernesto, and have finished my immunoglobulin shots - maybe they were helping. Anyway, I just hope I get to that level again and then improve more. Take care

and good luck! Love, Sandi

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

September 9, 2006

HI , That is the million dollar question. Literally. My claims over this 10 years of chasing doctor to doctor must be close to that amount if you add up all the supplements, surgeries, office visits, alternative medicine visits, medication... Thank God for insurance. It is so easy for drs to just say vulvodynia b/c it sounds official. But when you ask what that means you find out it is Latin for vulvar pain. Well, duh, I knew that already. It reminds me of that FedEx commercial where the nerdy guy at a meeting had the money saving idea of opening an account on FedEx.com and no one listened but when the older man in a fancy suit used the appropriate hand gesture and said the same exact thing people thought he was a genious. What is the cause of v pain? No one knows and everyone is different. Which leaves the

patient to first try the standard treatments like PT, antidepressants, antihistamines, estrogen cream and all that other first line stuff and if that doesn't work one is SOL and left to find the cause on her own. That is where the nightmare gets even uglier and that is where I have been for so many years. I don't even need to know the cause exactly - just hit on the right treatment even if it is something like a nerve block. I am going to the Fibro and Fatigue Center and until last week I was having pretty good luck. My pain level went way down for the first time in 10 years. BUT it is back now and I am devastated. I had a stressful weekend with some family stuff, hurt my sacrum area by picking up sticks in the yard after Ernesto, and have finished my immunoglobulin shots - maybe they were helping. Anyway, I just hope I get to that level again and then improve more. Take care

and good luck! Love, Sandi

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

September 9, 2006

HI , That is the million dollar question. Literally. My claims over this 10 years of chasing doctor to doctor must be close to that amount if you add up all the supplements, surgeries, office visits, alternative medicine visits, medication... Thank God for insurance. It is so easy for drs to just say vulvodynia b/c it sounds official. But when you ask what that means you find out it is Latin for vulvar pain. Well, duh, I knew that already. It reminds me of that FedEx commercial where the nerdy guy at a meeting had the money saving idea of opening an account on FedEx.com and no one listened but when the older man in a fancy suit used the appropriate hand gesture and said the same exact thing people thought he was a genious. What is the cause of v pain? No one knows and everyone is different. Which leaves the

patient to first try the standard treatments like PT, antidepressants, antihistamines, estrogen cream and all that other first line stuff and if that doesn't work one is SOL and left to find the cause on her own. That is where the nightmare gets even uglier and that is where I have been for so many years. I don't even need to know the cause exactly - just hit on the right treatment even if it is something like a nerve block. I am going to the Fibro and Fatigue Center and until last week I was having pretty good luck. My pain level went way down for the first time in 10 years. BUT it is back now and I am devastated. I had a stressful weekend with some family stuff, hurt my sacrum area by picking up sticks in the yard after Ernesto, and have finished my immunoglobulin shots - maybe they were helping. Anyway, I just hope I get to that level again and then improve more. Take care

and good luck! Love, Sandi

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

September 9, 2006

HI Sandi....

Hon I was so glad to hear your pain level had diminished some for you... Hooray for you and even though it's back now that definitely has to give you hope hon. To know something turned it around even if it wasn't long lived. That answer IS out there somewhere. Keep on keeping on doll, you'll find it yet. Hugs

Dee~

September 9, 2006

HI Sandi....

Hon I was so glad to hear your pain level had diminished some for you... Hooray for you and even though it's back now that definitely has to give you hope hon. To know something turned it around even if it wasn't long lived. That answer IS out there somewhere. Keep on keeping on doll, you'll find it yet. Hugs

Dee~

September 10, 2006

<<I was recently diagnosed with Vulvodynia, which I think is a bs

> phrase used by doctors who really want to say, " I don't know why

your

> vagina is goozing(yes goozing) acidic discharge, and why it feels

> like someone is putting out cigarettes between your legs " >.

Hi,

while it's trus that not that much is known about vulvodynia and it's

causes, it means a pain in the vulva in the absence of an obvious

infection or skin condition, and is not usually associated with a

chronic discharge.

<< Anyway, my main question is how dos one know that her itching is

just the normal vulvodynia, and not yeast or BV? >>.

itching is not usually a feature of vulvodynia, there may be yeast or

another skin condition.

<< the last time I had sex I developed some kind of tiny fever

blister thingy...(tests came back negative for warts and

herpes..thank God)>.

You say that you had treatment for HPV, which is a wart virus, yet

you say that you are now free of warts, I thought the virus lives on

in our systen once you have it? Am wondering if it's possible for the

HPV to have caused some sort of nerve damage which led to vulvodynia.

Have you hasd any treatment for BV? I found that 2 treatments sorted

out my unusual discharge once and for all which at least meant that I

had one less thing to deal with.

I guess it's a process of elimination and trying various treatment

options. Good luck and best wishes,

Kay

September 10, 2006

<<I was recently diagnosed with Vulvodynia, which I think is a bs

> phrase used by doctors who really want to say, " I don't know why

your

> vagina is goozing(yes goozing) acidic discharge, and why it feels

> like someone is putting out cigarettes between your legs " >.

Hi,

while it's trus that not that much is known about vulvodynia and it's

causes, it means a pain in the vulva in the absence of an obvious

infection or skin condition, and is not usually associated with a

chronic discharge.

<< Anyway, my main question is how dos one know that her itching is

just the normal vulvodynia, and not yeast or BV? >>.

itching is not usually a feature of vulvodynia, there may be yeast or

another skin condition.

<< the last time I had sex I developed some kind of tiny fever

blister thingy...(tests came back negative for warts and

herpes..thank God)>.

You say that you had treatment for HPV, which is a wart virus, yet

you say that you are now free of warts, I thought the virus lives on

in our systen once you have it? Am wondering if it's possible for the

HPV to have caused some sort of nerve damage which led to vulvodynia.

Have you hasd any treatment for BV? I found that 2 treatments sorted

out my unusual discharge once and for all which at least meant that I

had one less thing to deal with.

I guess it's a process of elimination and trying various treatment

options. Good luck and best wishes,

Kay

September 10, 2006

resend - I hope the list doesn't get this a zillion times. Yahoo is bouncing back to me.

.

Are you on birth control pills?They are known for causing problems and a number of women, once off of them for several months get their regular hormonal balances back where they belong.

IF it was me in your circumstances I believe among the first things I would do is:

Have a complete hormone panel done of estrogens, progesterones and testosterone - at the approriate time in my menstrual cycle. too often we get into this shape because our bodies just aren't producing the right balance of hormones. Thick creamy discharge is a sign of too much progesterone and not enough estrogen in my body.

I'd Get pH strips and test this gooze - to be certain it is acidic. Could be that it isn't anyting at all harmful - but that its your skin which is too abraded and sensitive to handle any kind of discharge. Or, have the discharge cultured for the long term culture - the one that takes several weeks - for growing and identifying problems that can't be found on a shorter growth cycle culture.

Have a vulvar biopsy done to rule out the Lichens, or any other known vulvar disease.

Have bloodwork done for thyroid function - the complete panel. A Poorly functioning thyroid can affect the way our immune systems work, our hormonal balance and many many other aspects of our lives.

Begin a program now to improve your overall health. Try adding zinc supplments to your diet, eating more healthy foods, and using a good probiotic to see if it helps improve the condition of your vaginal vault. One that has helped me is Danactive Probiotic drink found in dairy sections of storess. Google the following sites for info on the potentitial benefits of probiotics and the importance of taking/using the correct kind of bacteria for your problems.

http://www.usprobiotics.org/http://www.relfe.com/lactobacillus.htmland this site if you have had a vulvar biopsy and it's come back with "atopic dermatitis".http://www.aaaai.org/aadmc/currentliterature/selectedarticles/2004archive/lactobacillus_dermatitis.html andI googled vaginal flora and probiotics and got a number of hits. ONe of my favorite sites came up - Medscape.... under the title PROBIOTICS IN FEMALE UROGENITAL HEALTHCARE . Don't know if you are enrolled in MEdscape - it's free. There's info there and an excerpt from this site: http://www.medscape.com/viewarticle/470468_4contains this info: Most urogenital microflora originate from the gut and ascend via the rectum. Studies have shown that daily oral intake of L rhamnosus GR-1 and L fermentum RC-14 can modify the vaginal flora.[15, 52, 53] In a randomized, double-blind, placebo-controlled study of 64 healthy women, daily intake of L rhamnosus GR-1 and L fermentum RC-14 resulted in significantly less yeast and fewer coliforms in the vagina.[15] Vaginal swabs (blinded) were sent to an independent laboratory and cultured. Cultures revealed significantly more lactobacilli and less yeast and fewer coliforms in the lactobacilli-treated group; whereas the swabs obtained from women treated with placebo showed a significant increase in yeast and coliforms, perhaps explaining why the vaginal flora is so commonly "abnormal." Administration of the probiotic organisms even normalized flora in some cases of BV, making it feasible to study this as an approach to long-term therapy for pregnant women and those susceptible to BV and UTI. The ability of these organisms to displace other organisms was shown previously in vitro.[82]

Good luck

dusty

September 10, 2006