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Sandi-

I understand what you mean about wanting to try all treatments and just

get better because that is my philosophy too! I, however, was able to

convince my doctor to treat me many ways at once to find some sort of

relief. Currently, I am taking 200 mg Nizoral daily, 20mg Elavil, 20 mg

Prozac, calcium citrate, Estrace, physical therapy, and the low oxalate

diet. I know that sounds overwhelming to a lot of you, but my pain is

overwhelming. I have been following the diet and Estrace for 2 months,

and just started the Elavil. I have seen gradual results. I am not

doing great, but I would say that I am 20% better. I can wear jeans on

my great days with slight discomfort. My periods are still shear hell,

as are the flareups because of not completely following the low oxalate

diet.

I think that you should explain to your dr. that you don't care which

treatment provides relief as long as you have relief. It cannot hurt to

use the Estrace, tri cyclics, and the diet at once. I think that if drs.

actually felt our pain for a day, they would agree. I am sure that a lot

of you have had drs. tell you that they are just as frustrated as we are

that we are suffering, but they can't be because they don't know how it

feels to hurt everytime you sit, worry that you'll never have a normal

sex life, etc.

Remember...I honestly believe that we will not live the rest of our lives

in pain. We will find a treatment or combination of treatments that will

restore our quality of life.

Feel better soon, christy

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Sandi,

Is your rash completely gone between cycles? I always have my

blotchiness but its much lighter when no stress or heat.

Here's a thought I'm just throwing out. Have you or anyone else noticed

that when you climax you get the same red blotchiness on the chest?

Doctors say that's normal for women and again respiratory, just

wondering. Dee :) dtroll@...

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Hi Dee,

The rash is completely gone between cycles. I don't ever have blotchiness.

It looks like an allergic reaction type of rash and is very uncomfortable,

not itchy. None of the doctors seem concerned, but I still think it has

something to do with my problem. It usually lasts about 2 days and then

fades.

Sandi

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Hi Sandi,

The rash I get doesn't stay long enough to see a doctor. By the time I get

there, it'd be gone!

Sheri

In a message dated 5/1/99 8:41:10 PM Eastern Daylight Time,

SandiSharp@... writes:

<< Since I try not to

schedule doctors appointments around the time of my period they have never

seen the rash. But that is a good idea! >>

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Hi Sheri,

My rash is quick too. It lasts about a day or two. By the time I'd make the

appointment it would be gone. Are you prone to rashes? I have never ever

had a rash before this problem. Do you think it has to do with your vv?

Sandi

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Hi Sandi,

I'm not really prone to rashes or anything else for that matter! Since the

vv though, I've had TMJ (still very bothersome), irritable bowel (not so much

now but very bad at the beginning), anxiety problems (mostly at the

beginning), and the rashes (only monthly for about a day). Other than that,

I'm not too bad off. I guess I'm one of the lucky ones who found pain

management, unfortunately not a cure yet though.

Sheri

In a message dated 5/2/99 9:42:36 PM Eastern Daylight Time,

SandiSharp@... writes:

<<

My rash is quick too. It lasts about a day or two. By the time I'd make

the

appointment it would be gone. Are you prone to rashes? I have never ever

had a rash before this problem. Do you think it has to do with your vv?

>>

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Hi Sandi,

I had a strange rash almost a year ago. I got a round itchy blotch on my

right chin and another one on my left leg. It happened at the same time I was

having a really bad vulvar pain flare up. This same rash

has reoccurred several times in the same spots but not as intensely as the first

time. I really have believed since the first time it happened that it was

related to the vulvar problem but I have not mentioned it

to any doctors. I have only been to a doctor once since this started and the

rash wasn't showing up then. Maybe you are on to something.

Jacovia

SandiSharp@... wrote:

> From: SandiSharp@...

>

> Hi Sheri,

>

> My rash is quick too. It lasts about a day or two. By the time I'd make the

> appointment it would be gone. Are you prone to rashes? I have never ever

> had a rash before this problem. Do you think it has to do with your vv?

>

> Sandi

>

> ------------------------------------------------------------------------

> Looking for the perfect gift for a friend?

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> Tell them about ONElist's 130,000 free e-mail communities!

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Hi Sandi & Everyone Else,

Now I know that this is going to sound strange but...

my husband gets a rash and I really don't think it has

anything to do with vv as much as it has to do with

stress. I notice (and he does too) that whenever he

is under alot of stress he gets a red spot on his chin

in the EXACT same spot every time and it spreads down

his neck. It starts out the size of a quarter and

goes from there over a several day period. He will

have it for a few days and then it goes away. I KNOW

he doesn't have vv. :) I hope that every one had a

great weekend and that the coming week brings lots of

smiles. Michele

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