Re: Any ideas what might be the cause?

[Guest guest]

Hi,

I have experienced those sypmtoms.

Test postive for nothing. I went on the Candida Free diet last summer and had

relief

from the burning. SO that is when I figured it was related to sugar, yeast

and what i was eating. When I eat corn it burns. Give me a Dairy Queen Ice

Cream Cone and I itch all over and my vulvar area burns.

I would suggest the candida diet and/or the food allergy elimination diet. It

has worked for many of us. Most conventional doctors will say HOGWASH, but

after seeing tons of them, I did my own work and have had relief. Also, are

you on the PILL? Many say that doenst matter, but it did for me. This started

after I went on the pill after not being on it for 11 yrs. High progestin

pills are especially bad. I went off about a year ago. I have had this for 2

yrs. I am using Estring vaginal estrogen ring to compensate for the messed up

hormones. My hormones tested ok at the docs office but this has helped some.

Avoiding, yeasty, sugary foods, dairy and corn has helped the most. Most of us

dont want to give up those nummy foods, but it has given us relief from the

pain. (burning and itching)

best of luck,

I also take natural herbs and acidophillus powder 2 times a day.

[Guest guest]

Hi,

I have experienced those sypmtoms.

Test postive for nothing. I went on the Candida Free diet last summer and had

relief

from the burning. SO that is when I figured it was related to sugar, yeast

and what i was eating. When I eat corn it burns. Give me a Dairy Queen Ice

Cream Cone and I itch all over and my vulvar area burns.

I would suggest the candida diet and/or the food allergy elimination diet. It

has worked for many of us. Most conventional doctors will say HOGWASH, but

after seeing tons of them, I did my own work and have had relief. Also, are

you on the PILL? Many say that doenst matter, but it did for me. This started

after I went on the pill after not being on it for 11 yrs. High progestin

pills are especially bad. I went off about a year ago. I have had this for 2

yrs. I am using Estring vaginal estrogen ring to compensate for the messed up

hormones. My hormones tested ok at the docs office but this has helped some.

Avoiding, yeasty, sugary foods, dairy and corn has helped the most. Most of us

dont want to give up those nummy foods, but it has given us relief from the

pain. (burning and itching)

best of luck,

I also take natural herbs and acidophillus powder 2 times a day.

[Guest guest]

It could be corn or some other food. Corn is in Soda pop, white bread that

has corn syrup in it..cereals, pototo chips that are fried in vegetable

oil..anything with veggie oil, fast food buns, french fries, fake maple

syrup, etc. It could be garlic, a certain fruit, a meat..anything!

Try the food elimination diet or get a blood food allergy test.

I can not have dairy, which means all baked goods too, because of milk, eggs,

no corn, and a few other things.

Your body could be reacting to other foods besides sugar.

Allergies can develope at anytime in our lives and it is mostly the foods

that we eat the most of...

susan

[Guest guest]

It could be corn or some other food. Corn is in Soda pop, white bread that

has corn syrup in it..cereals, pototo chips that are fried in vegetable

oil..anything with veggie oil, fast food buns, french fries, fake maple

syrup, etc. It could be garlic, a certain fruit, a meat..anything!

Try the food elimination diet or get a blood food allergy test.

I can not have dairy, which means all baked goods too, because of milk, eggs,

no corn, and a few other things.

Your body could be reacting to other foods besides sugar.

Allergies can develope at anytime in our lives and it is mostly the foods

that we eat the most of...

susan

[Guest guest]

and all:

Thanks for your response. I'm not on the pill. I'm familiar with the Yeast

Free Diet, something that I was on pretty strictly a few years back in hopes

of helping my allergies (hayfever) and chronic colds. Unfortunately, I

didn't notice any improvement of those issues so I was unmotivated to stay

on such a strict diet.

That said, my diet is still pretty darn healthy: no alcohol, coffee, or

dairy, I avoid processed foods, wheat, fruits and fruit juices, and eat lots

of organic green vegetables...tho' I do eat sugar (honey, molasses, fruit

juices) in health food cookies and Soy ice cream. My symptoms have not

seemed to get worse when I'm on a sweet tooth binge, nor feel better in

weeks when I don't eat less sugar. Since I've had this irritation, I haven't

tried eliminating sugar completely for more than 1 week, so that's probably

what I'll try next. How long after eliminating sugar have most of you

started seeing improvement in your symptoms?

What confuses me is that I've never had anything like these symptoms

before...never had chronic yeast infections or vulvar itching. My diet has

been the same for years. Maybe I'm being too logical and limited in my

thinking, but I just don't understand why this would come on full blast out

of nowhere? said hers started b/c she went on the pill..which is at

least a cause. Have others with similar symptoms had them start without any

particular provocation?

Finally, from the messages I've scanned on the list, many of you seem to

have improved your symptoms, but not gotten rid of them completely. So, are

you able to have sex without horrible flare ups? Anythings that help with

this?

Thanks again. I really appreciate the feedback.

--Brandee

----------

>From: BlueeBerri@...

>To: VulvarDisorders , bselck@...

>Subject: Re: Any ideas what might be the cause?

>Date: Wed, Apr 24, 2002, 10:31 AM

>

>Hi,

>I have experienced those sypmtoms.

>Test postive for nothing. I went on the Candida Free diet last summer and had

>relief

>from the burning. SO that is when I figured it was related to sugar, yeast

>and what i was eating. When I eat corn it burns. Give me a Dairy Queen Ice

>Cream Cone and I itch all over and my vulvar area burns.

>I would suggest the candida diet and/or the food allergy elimination diet. It

>has worked for many of us. Most conventional doctors will say HOGWASH, but

>after seeing tons of them, I did my own work and have had relief. Also, are

>you on the PILL? Many say that doenst matter, but it did for me. This started

>after I went on the pill after not being on it for 11 yrs. High progestin

>pills are especially bad. I went off about a year ago. I have had this for 2

>yrs. I am using Estring vaginal estrogen ring to compensate for the messed up

>hormones. My hormones tested ok at the docs office but this has helped some.

>Avoiding, yeasty, sugary foods, dairy and corn has helped the most. Most of us

> dont want to give up those nummy foods, but it has given us relief from the

>pain. (burning and itching)

>best of luck,

>

>I also take natural herbs and acidophillus powder 2 times a day.

[Guest guest]

Are you testing possitive for yeast?

I think that most of us on the list would say that they started noticing

symptoms after a bad bout of yeast and then several missdagnosed infections.

I am sure that susan has already told you about the possibility of food

allergies. I am suppose to stay away from sugar myself. I have an impaired

glucose tolerance. It could be something like that, or it could be a

contact irritation from laytex condoms or some lubricants like you said.

Also, many lubricated condoms contain nonoxinol 9 ( a spermicide) this can

be a major chemical irritant.

Another possibility is an allergie to your husbands sperm. I use sheep skin

condoms for that.

Of course if it isnt someting simple like that, it is likley vulvar

vestibulitis, or a skin issue like Lichen Sclerosis. Many women get relife

from estrace cream and short periods of using topical steriods. Biofeedback

is good if there is an underlying pelvic alignment issue.

Also, if you have been treating vaginal infections now for a while, and/or

have been using a lot of antibiotics. You may have killed off all of your

healthy bacteria. This would cause yeast or other bacteria normally found

in smaller numbers to grown in its place.

This is a difficult condition to find the cause of and each woman is

diffrent. So what works for one woman may not work for another.

Bunny /| |\

. .

( ! )

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

> Hi,

> I have experienced those sypmtoms.

> Test postive for nothing. I went on the Candida Free diet last

summer and had

> relief

> from the burning. SO that is when I figured it was related to

sugar, yeast

> and what i was eating. When I eat corn it burns. Give me a Dairy

Queen Ice

> Cream Cone and I itch all over and my vulvar area burns.

> I would suggest the candida diet and/or the food allergy

elimination diet. It

> has worked for many of us. Most conventional doctors will say

HOGWASH, but

> after seeing tons of them, I did my own work and have had relief.

>

That Redbook article that was posted a couple of weeks ago...the

women ended up being allergic to Gallic Acid which is in most foods.

It's part of the Phenolics group if anyone is into NAET allergy

testing.

She had done the low oxalate diet and it didn't work...as a matter of

fact--she got worse. Turns out the foods suggested for low oxalate

are high in Gallic Acid.

Allergens are a tough one because what is a problem for one of

us...is not for others. Testing is the only thing I can think of

other than rotation to see what the items are.

Lynn

[Guest guest]

> Hi,

> I have experienced those sypmtoms.

> Test postive for nothing. I went on the Candida Free diet last

summer and had

> relief

> from the burning. SO that is when I figured it was related to

sugar, yeast

> and what i was eating. When I eat corn it burns. Give me a Dairy

Queen Ice

> Cream Cone and I itch all over and my vulvar area burns.

> I would suggest the candida diet and/or the food allergy

elimination diet. It

> has worked for many of us. Most conventional doctors will say

HOGWASH, but

> after seeing tons of them, I did my own work and have had relief.

>

That Redbook article that was posted a couple of weeks ago...the

women ended up being allergic to Gallic Acid which is in most foods.

It's part of the Phenolics group if anyone is into NAET allergy

testing.

She had done the low oxalate diet and it didn't work...as a matter of

fact--she got worse. Turns out the foods suggested for low oxalate

are high in Gallic Acid.

Allergens are a tough one because what is a problem for one of

us...is not for others. Testing is the only thing I can think of

other than rotation to see what the items are.

Lynn

[Guest guest]

Yes I can have sex and I only have symptoms if I eat those foods..like a food

hangover.

Its like when you drink too much alcohol..you get a hangover the next day.

Too much of the sensitive foods in your system and you get a burning crotch.

[Guest guest]

Mine started after the PILL, a bacterial infection that was misdiagnosed and

treated with yeast meds,,,9 months of antibotics, a new boyfriend, a

stressful break up with an old boyfriend, my ex was recovering from luekemia,

I was out partying everyweekend, eating tons of restaurant and processed

food, soda pop, I am 40 was 38 when this started, I am sure premenopause has

a role in this too. I have no good flora in my intestines right now from all

the antibotics. Taking lactobaccill and herbs and avoiding allergenic foods

for relief. I have tons of pain free days!

[Guest guest]

Mine started after the PILL, a bacterial infection that was misdiagnosed and

treated with yeast meds,,,9 months of antibotics, a new boyfriend, a

stressful break up with an old boyfriend, my ex was recovering from luekemia,

I was out partying everyweekend, eating tons of restaurant and processed

food, soda pop, I am 40 was 38 when this started, I am sure premenopause has

a role in this too. I have no good flora in my intestines right now from all

the antibotics. Taking lactobaccill and herbs and avoiding allergenic foods

for relief. I have tons of pain free days!

[Guest guest]

>

> What confuses me is that I've never had anything like these symptoms

> before...never had chronic yeast infections or vulvar itching. My

diet has

> been the same for years. Maybe I'm being too logical and limited in

my

> thinking, but I just don't understand why this would come on full

blast out

> of nowhere? said hers started b/c she went on the pill..which

is at

> least a cause. Have others with similar symptoms had them start

without any

> particular provocation?

>

>

> --Brandee

Brandee...did you tell us how old you are? I might have missed it.

If you are starting into perimenopause or menopause..your vaginal pH

can change. The changing of the pH causes more yeast

infections/bacterial infections. Also Diabetes is another thing to

look for. Have you taken a lot of antibiotics? Acne meds?

http://www.campuslife.utoronto.ca/services/sec/alter.html

http://www.estronaut.com/a/yeast_info.htm

From what I have read...if you get chronic vaginal yeast infection

then you need to treat your whole body as well. This ususally means

it is overloaded in your body as well as the vagina.

Lynn

[Guest guest]

>

> What confuses me is that I've never had anything like these symptoms

> before...never had chronic yeast infections or vulvar itching. My

diet has

> been the same for years. Maybe I'm being too logical and limited in

my

> thinking, but I just don't understand why this would come on full

blast out

> of nowhere? said hers started b/c she went on the pill..which

is at

> least a cause. Have others with similar symptoms had them start

without any

> particular provocation?

>

>

> --Brandee

Brandee...did you tell us how old you are? I might have missed it.

If you are starting into perimenopause or menopause..your vaginal pH

can change. The changing of the pH causes more yeast

infections/bacterial infections. Also Diabetes is another thing to

look for. Have you taken a lot of antibiotics? Acne meds?

http://www.campuslife.utoronto.ca/services/sec/alter.html

http://www.estronaut.com/a/yeast_info.htm

From what I have read...if you get chronic vaginal yeast infection

then you need to treat your whole body as well. This ususally means

it is overloaded in your body as well as the vagina.

Lynn

[Guest guest]

About 3 years ago I started developing a stinging feeling around the

opening of my vagina and it seemed I was getting yeast infections a

couple of times a month. Incidentally, this all started after I went

off Depo-Provera. At first I had no physical symptoms besides yeast,

then after about a year and a half the skin at the vestibule (opening

to vagina) became red and inflammed. About the same time I developed

a feeling of pressure on my bladder and pain around the opening of my

urethra.

I was diagnosed with vulvar vestibulitis syndrome. I finally went to

a clinic that specializes in VV, and they tested me for allergies. I

am allergic to corn, wheat, and bakers yeast. Of course like

said these things are in food I ate all the time, corn syrup, wheat

flour, etc. I have to avoid them completely or else I have some VV

symptoms, but they are milder than they used to be on vulvar pain

side, but I have more grogginess now than before. I was also

diagnosed as being allergic to some of my own hormones, estrogen,

testosterone and LH. Hormone allergy manifests as slightly lower than

normal levels of the hormone, and just makes you feel like crap in

general. I think the thing that set this off for me was going off

Depo and having my hormone levels shoot back up to normal. It is

common for a yeast infection or new partner to set this off too.

I am doing desensitization for all my allergies, and feel a lot

better than I have in years. I am 26 years old. I am not out of the

woods yet, but I am much better than I was 2 years ago.

in SF

[Guest guest]

About 3 years ago I started developing a stinging feeling around the

opening of my vagina and it seemed I was getting yeast infections a

couple of times a month. Incidentally, this all started after I went

off Depo-Provera. At first I had no physical symptoms besides yeast,

then after about a year and a half the skin at the vestibule (opening

to vagina) became red and inflammed. About the same time I developed

a feeling of pressure on my bladder and pain around the opening of my

urethra.

I was diagnosed with vulvar vestibulitis syndrome. I finally went to

a clinic that specializes in VV, and they tested me for allergies. I

am allergic to corn, wheat, and bakers yeast. Of course like

said these things are in food I ate all the time, corn syrup, wheat

flour, etc. I have to avoid them completely or else I have some VV

symptoms, but they are milder than they used to be on vulvar pain

side, but I have more grogginess now than before. I was also

diagnosed as being allergic to some of my own hormones, estrogen,

testosterone and LH. Hormone allergy manifests as slightly lower than

normal levels of the hormone, and just makes you feel like crap in

general. I think the thing that set this off for me was going off

Depo and having my hormone levels shoot back up to normal. It is

common for a yeast infection or new partner to set this off too.

I am doing desensitization for all my allergies, and feel a lot

better than I have in years. I am 26 years old. I am not out of the

woods yet, but I am much better than I was 2 years ago.

in SF

[Guest guest]

hello-

Your story sounds very much like mine,right down to the new guy. I was also pummeled with all those same things in the begining. Chances are it probley isn't yeast , you need to find a vulvar specialist to help you. Hopefully you will have more luck finding a good one than I have had in the past 21/2 years. I also am using estring and it had helped with that burning after sex that felt like being injected with acid. I also found that allegra helps with the swelling and any itching. Baking soda sitz bathes are soothing also.

Have you had your hormonal levels checked?

Daphne

Any ideas what might be the cause?

Hello:This is a long message but I am hoping you will take the time to read it and offer your wisdom and insights. For the last 7 months straight I have been suffering from what feels like a low-level yeast infection. It has me and my gynecologist baffled. The Details:* I'm a healthy 29 year old woman who (other than a few normal yeast infections) has had a happy vagina. * 7 months ago I started having sex with a new male partner. After 1 month I got what I thought was a mild yeast infection which I immediately started treating with over-the-counter creams before it could turn into a raging infection. The infection never became raging, but it didn't get better, so I went to my gynecologist who said she saw yeast and gave me more medications. * When the medications didn't work, I was tested and came up negative for bacterial infection, gonnorhea and chlamydia. My Pap was also normal. * In the first 3 months I tried: 3 or 4 major types of vaginal creams, hydrocortisone, 3 rounds of Diflucan, acidophilus taken orally and as a vaginal suppository, douching for 2+wks with vinegar, douching for 2+wks with hydrogen peroxide and took 2 different Chinese herb tinctures recommended to me by a holistic practitioner. I also have been extra careful to not use soap around my vulva, dry myself well, use hypo-alergenic laundry detergent, etc etc. Nothing has had _any_ effect on my symptoms.* The last 4 months I haven't been sexually active. I therefore have had no contact with latex or lubricant, a common culprit of irritation. In these last 4 months I have done nothing directly to cure this mysterious infection. Instead I've done some meditation and bodywork and hoped it would go away on it's own. * I went to my gynecologist again today. She couldn't see any yeast or bacteria and says I look completely healthy and normal.* Alas, my symptoms continue: burning and itching mainly of my the front area of my labia around the clitoris. I don't have any noticeable discharge or odor. My symptoms stay at a fairly mild level most of the time, but any sexual activity (even 5 minutes with my vibrator) significantly increases the burning and itching. Sometimes heat (from exercising, etc) will also irritate it. When I was previously having intercourse, the inside of my vagina also burned and itched, making sex very painful, like it is with a yeast infection. So my question to you all is: has anyone else experienced anything similar? Does anyone know what this yeast-like irritation might be? If it is a yeast infection, how was it not affected at all by any of the various home, Western and Eastern remedies I pummelled it with? And has anyone ever had a longterm low-level yeast infection that stayed at a mild level and didn't rage? And most importantly, will I ever be able to be sexually active again without being in total burning pain?Thank you for your help.--Brandee*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

the only thing I have seen from people on the yeast free diets is they never can

get off of them. they always say if I take one bite of sugar my symptoms come

back. so has anyone gotten off of it and been successful?

Traci

[Guest guest]

the only thing I have seen from people on the yeast free diets is they never can

get off of them. they always say if I take one bite of sugar my symptoms come

back. so has anyone gotten off of it and been successful?

Traci

[Guest guest]

Thanks to all of you for your responses.

To answer your questions:

* I'm single, 29 yrs old and have never been pregnant.

* I am testing _negative_ for yeast.

* I haven't had sex in over 4 months, so it's definately not a latex, lube

or sperm allergy.

* I've only taken antibiotics a handful of times in my life, the last time

being over 8 years ago.

* My symptoms don't get worse around my period, so I don't think it's

sanitary products either.

I wouldn't catagorize my symptoms as chronic yeast infections since it's

been one 7 month-long infection that has never gotten better. I have been

trying a whole body approach for about 4 months now, thinking that my system

was just compromised overall. Since that hasn't helped (yet), I wanted to

see if there are any other disorders that might be the cause.

suggested it might also be something like vulvar vestibulitis, or

a skin issue like Lichen Sclerosis. I don't know much about these disorders,

but it seems that they are all detectable by a ob/gyn. My ob/gyn said my

vulva and vagina look healthy and normal. Has anyone with VV or lichen

sclerosis been told they are normal only to later find out they really had

it?

And about sex, I'd like to hear from more of those with symptoms similar to

mine: are you able to have sex without horrible flare ups? What have you

found helpful to keep symptoms under control when you have sex? Please tell

me I can have pain-free sex again.

it's very likely I have a food allergy/allergies and I just have to keep

searching until I discover it. Also, I've considered trying NAET. How many

of you have had positive effects from NAET? Are there any of you who have

tried it, but it didn't work?

thanks,

Brandee

[Guest guest]

Thanks to all of you for your responses.

To answer your questions:

* I'm single, 29 yrs old and have never been pregnant.

* I am testing _negative_ for yeast.

* I haven't had sex in over 4 months, so it's definately not a latex, lube

or sperm allergy.

* I've only taken antibiotics a handful of times in my life, the last time

being over 8 years ago.

* My symptoms don't get worse around my period, so I don't think it's

sanitary products either.

I wouldn't catagorize my symptoms as chronic yeast infections since it's

been one 7 month-long infection that has never gotten better. I have been

trying a whole body approach for about 4 months now, thinking that my system

was just compromised overall. Since that hasn't helped (yet), I wanted to

see if there are any other disorders that might be the cause.

suggested it might also be something like vulvar vestibulitis, or

a skin issue like Lichen Sclerosis. I don't know much about these disorders,

but it seems that they are all detectable by a ob/gyn. My ob/gyn said my

vulva and vagina look healthy and normal. Has anyone with VV or lichen

sclerosis been told they are normal only to later find out they really had

it?

And about sex, I'd like to hear from more of those with symptoms similar to

mine: are you able to have sex without horrible flare ups? What have you

found helpful to keep symptoms under control when you have sex? Please tell

me I can have pain-free sex again.

it's very likely I have a food allergy/allergies and I just have to keep

searching until I discover it. Also, I've considered trying NAET. How many

of you have had positive effects from NAET? Are there any of you who have

tried it, but it didn't work?

thanks,

Brandee

[Guest guest]

<< So my question to you all is: has anyone else experienced

anything similar? Does anyone know what this yeast-like

irritation might be? If it is a yeast infection, how was it not

affected at all by any of the various home, Western and Eastern

remedies I pummelled it with? And has anyone ever had a

longterm low-level yeast infection that stayed at a mild level and

didn't rage? And most importantly, will I ever be able to be

sexually active again without being in total burning pain?

>>

_________

Hi Brandee--

You're story is a familiar one to us here on this list. I am sorry to say

that it sounds like you have what is generically called " vulvodynia " . There

are many different triggers, many different symptoms and many different

" cures " --which is what makes this disorder so baffling and hard to deal with.

Off hand, I would say since you are coming up clean on all of your tests and

the gyne says you look normal and cannot explain the burning and

irritation...well, it sounds pretty familiar--and you have some options to

explore.

Everyone will no doubt pitch in with their 2 cents of experience--so here is

mine. Since I am not married, I cannot speak to your question about pain-free

sex, but others I'm sure will have some suggestions for you. Keep in mind

that this whole thing is different for all of us--and so what works for me

may or may not work for you.

My triggers were: an immune suppressing drug regimen, an auto immune

disease process, an ill-advised long term course of antibiotic, prednisone,

iodine as found in white fish and shrimp (allergies) as well as strawberries,

raspberries, chocolate, tomatoes and extremre stress. They aren't kidding

when they say, stress can kill you.

My symptoms were: extreme 24/7 vaginal/anal burning, unexplainable

rashes/hives on chest, legs, thighs...sometimes burning sensation on skin of

arms and legs

My tests: all negative/everything looks normal, with maybe a little

irritation/inflammation

My doctors: 2 gynecologists, 2 urologists, 2 naturopaths, a chiropracter, a

pain management physician and 2 rheumatologists... baffled, accusatory,

annoyed then dismissive

My various attempts to get this under control: diflucan, nizoral, nystatin,

atarax, claritan, tegretol, neurontin, imiprimine, lidocaine or some such

topical numbing gel, candida reducing diet, percoset, darvocet, vicodan,

morphine patch, chiropractic, meditation and prayer

Lifestyles Changes: reduced sugar intake to pretty much zero (including

carbs), no processed foods, no aspartame, no fast food, double rinse

underwear, using ultra-anti allergy soaps (no perfumes/dyes)

What worked for me: Elavil 50mgs/day, working up to 150mgs. (which brought

complete relief in about 3-4 weeks in combination with) a narcotic pain

medicine.

What side effects vexed me: extreme thirst, craving sweets, groggy/spacey

feeling in the AM.

How I dealt with side effects: toughed it out, drank tons of water which is

good for you anyhow. In about three months the side effects simply

resolved/went away.

Where I am now: I have since reduced to 100mgs of elavil and entirely

discontinued the pain medicine. I am pain free. I have a normal diet but

still have low-sugar in-take and absolutely no aspartame in any form.

Hope this helps. Feel free to write with any questions. I wish you well!

Good Luck,

Anne

[Guest guest]

<< So my question to you all is: has anyone else experienced

anything similar? Does anyone know what this yeast-like

irritation might be? If it is a yeast infection, how was it not

affected at all by any of the various home, Western and Eastern

remedies I pummelled it with? And has anyone ever had a

longterm low-level yeast infection that stayed at a mild level and

didn't rage? And most importantly, will I ever be able to be

sexually active again without being in total burning pain?

>>

_________

Hi Brandee--

You're story is a familiar one to us here on this list. I am sorry to say

that it sounds like you have what is generically called " vulvodynia " . There

are many different triggers, many different symptoms and many different

" cures " --which is what makes this disorder so baffling and hard to deal with.

Off hand, I would say since you are coming up clean on all of your tests and

the gyne says you look normal and cannot explain the burning and

irritation...well, it sounds pretty familiar--and you have some options to

explore.

Everyone will no doubt pitch in with their 2 cents of experience--so here is

mine. Since I am not married, I cannot speak to your question about pain-free

sex, but others I'm sure will have some suggestions for you. Keep in mind

that this whole thing is different for all of us--and so what works for me

may or may not work for you.

My triggers were: an immune suppressing drug regimen, an auto immune

disease process, an ill-advised long term course of antibiotic, prednisone,

iodine as found in white fish and shrimp (allergies) as well as strawberries,

raspberries, chocolate, tomatoes and extremre stress. They aren't kidding

when they say, stress can kill you.

My symptoms were: extreme 24/7 vaginal/anal burning, unexplainable

rashes/hives on chest, legs, thighs...sometimes burning sensation on skin of

arms and legs

My tests: all negative/everything looks normal, with maybe a little

irritation/inflammation

My doctors: 2 gynecologists, 2 urologists, 2 naturopaths, a chiropracter, a

pain management physician and 2 rheumatologists... baffled, accusatory,

annoyed then dismissive

My various attempts to get this under control: diflucan, nizoral, nystatin,

atarax, claritan, tegretol, neurontin, imiprimine, lidocaine or some such

topical numbing gel, candida reducing diet, percoset, darvocet, vicodan,

morphine patch, chiropractic, meditation and prayer

Lifestyles Changes: reduced sugar intake to pretty much zero (including

carbs), no processed foods, no aspartame, no fast food, double rinse

underwear, using ultra-anti allergy soaps (no perfumes/dyes)

What worked for me: Elavil 50mgs/day, working up to 150mgs. (which brought

complete relief in about 3-4 weeks in combination with) a narcotic pain

medicine.

What side effects vexed me: extreme thirst, craving sweets, groggy/spacey

feeling in the AM.

How I dealt with side effects: toughed it out, drank tons of water which is

good for you anyhow. In about three months the side effects simply

resolved/went away.

Where I am now: I have since reduced to 100mgs of elavil and entirely

discontinued the pain medicine. I am pain free. I have a normal diet but

still have low-sugar in-take and absolutely no aspartame in any form.

Hope this helps. Feel free to write with any questions. I wish you well!

Good Luck,

Anne

[Guest guest]

Brandee...do you have a white glue like discharge?

Lynn

[Guest guest]

Brandee...do you have a white glue like discharge?

Lynn

[Guest guest]

Hi Brandee, if you could tell me a few things please.

What exactly are your symptoms??? pain, burning, vular pain, internal pain, back

or hip/leg pain?

If you are negative for a yeast infection why do you say it is like a 7 month

infection?

This might help shed some familiarity to the other sufferers on this board.

Thanks.

TKOPT

www.tomocklerpt.com

Brandee Selck wrote:

> Thanks to all of you for your responses.

>

> To answer your questions:

> * I'm single, 29 yrs old and have never been pregnant.

> * I am testing _negative_ for yeast.

> * I haven't had sex in over 4 months, so it's definately not a latex, lube

> or sperm allergy.

> * I've only taken antibiotics a handful of times in my life, the last time

> being over 8 years ago.

> * My symptoms don't get worse around my period, so I don't think it's

> sanitary products either.

>

> I wouldn't catagorize my symptoms as chronic yeast infections since it's

> been one 7 month-long infection that has never gotten better. I have been

> trying a whole body approach for about 4 months now, thinking that my system

> was just compromised overall. Since that hasn't helped (yet), I wanted to

> see if there are any other disorders that might be the cause.

>

> suggested it might also be something like vulvar vestibulitis, or

> a skin issue like Lichen Sclerosis. I don't know much about these disorders,

> but it seems that they are all detectable by a ob/gyn. My ob/gyn said my

> vulva and vagina look healthy and normal. Has anyone with VV or lichen

> sclerosis been told they are normal only to later find out they really had

> it?

>

> And about sex, I'd like to hear from more of those with symptoms similar to

> mine: are you able to have sex without horrible flare ups? What have you

> found helpful to keep symptoms under control when you have sex? Please tell

> me I can have pain-free sex again.

>

> it's very likely I have a food allergy/allergies and I just have to keep

> searching until I discover it. Also, I've considered trying NAET. How many

> of you have had positive effects from NAET? Are there any of you who have

> tried it, but it didn't work?

>

> thanks,

> Brandee

>

>

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