New to list

October 7, 2002

Hello everyone,

I have been lurking around here for a week or so and I thought I

would introduce myself and ask a few questions. my name is Tony and I

bet I am a rarity in that I am a man on this list. My wife of 8 yrs

was diagnosed with VV about 3-4 years ago (although she had symptoms

starting about 7 years ago, and was repeatedly misdiagnosed for 3

years or more.) Anyway, her main symptom(s) is pain on vulvar contact

(intercourse, tampons). As long as there is no contact she is mostly

OK, which I guess is better than some of you according to what I have

read!

Anyway, the reason I am here instead of her is that she is very

intimidated by this condition and anything medical that has to do

with it. She is deathly afraid of going to the doctor, ESPECIALLY

OB/GYN and she particulary does not like to see male doctors. (She

had a very bad experience that put her off male doctors at a young

age). So, I have been trying to gather information and anything that

might be helpful. The reason I am writing right now is that I had

read some posts from people who have used Temavate (sp?) steroid

cream with some success. I think I read that two weeks of steroid

followed by an estrogen cream was helpful in healing the vulvar skin?

I got a prescription for temavate a few weeks ago from a

dermatologist and I didn't end up using it (never even opened the

box). So I was thinking that if it is possible to get the estrogen

cream (if that is what she's supposed to follow up with) compounded

without a prescription that maybe she can try this regimen and see if

ti is helpful at all.

I know it is not the best idea for her to try this without seeing a

doc, but she has not been to the doctor in a couple of years and

basically just refuses to go. She feels like they don't listen and

don't care about her as a person, they just think she is a wierdo

when she tells them she hasn't had sex in 2+ years and she has been

having these symptoms for so long without actively pursuing

treatment. (I bet a lot of you had similar experiences) Adding to the

anti-doctor sentiment is the fact that she has already seen the guy

who is apparently the preeminent specialist in our area (Dr.

Summers in Salt Lake City UT) who prescribed her an overkill of

various antibiotics that didn't help her. She actually did find one

doctor that she felt cared and truly wanted to help, but then we

changed insurance co's and she can't see her anymore. In the past she

has been on various doses of amitryptaline (sp?) I think up to 75mg.

She did not tolerate it well (drowsiness) and it did not help with

the pain.

Any advice is greatly appreciated.

Also, once a long time ago I saw a men's VV/vulvodynia support group,

but can't find it now. Does anyone have a website for that?

Thanks,

Tony

October 9, 2002

Tony,

The estrogen cream is by persciption only. Sorry. Has your wife ever had

pain free sex? If not she should probably consider physical therapy or

biofeedback to relax her pelvic muscles. I know that is impossible with her

(very understandable) aversion to doctors. Do you think she would try going

to a doctor if you went along and promised to stop the doctor if she did

anything that hurt? Or you would stand up for her if the doctor was

disrespectful?

Marilyn A.

New to list

> Hello everyone,

>

> I have been lurking around here for a week or so and I thought I

> would introduce myself and ask a few questions. my name is Tony and I

> bet I am a rarity in that I am a man on this list. My wife of 8 yrs

> was diagnosed with VV about 3-4 years ago (although she had symptoms

> starting about 7 years ago, and was repeatedly misdiagnosed for 3

> years or more.) Anyway, her main symptom(s) is pain on vulvar contact

> (intercourse, tampons). As long as there is no contact she is mostly

> OK, which I guess is better than some of you according to what I have

> read!

>

> Anyway, the reason I am here instead of her is that she is very

> intimidated by this condition and anything medical that has to do

> with it. She is deathly afraid of going to the doctor, ESPECIALLY

> OB/GYN and she particulary does not like to see male doctors. (She

> had a very bad experience that put her off male doctors at a young

> age). So, I have been trying to gather information and anything that

> might be helpful. The reason I am writing right now is that I had

> read some posts from people who have used Temavate (sp?) steroid

> cream with some success. I think I read that two weeks of steroid

> followed by an estrogen cream was helpful in healing the vulvar skin?

> I got a prescription for temavate a few weeks ago from a

> dermatologist and I didn't end up using it (never even opened the

> box). So I was thinking that if it is possible to get the estrogen

> cream (if that is what she's supposed to follow up with) compounded

> without a prescription that maybe she can try this regimen and see if

> ti is helpful at all.

>

> I know it is not the best idea for her to try this without seeing a

> doc, but she has not been to the doctor in a couple of years and

> basically just refuses to go. She feels like they don't listen and

> don't care about her as a person, they just think she is a wierdo

> when she tells them she hasn't had sex in 2+ years and she has been

> having these symptoms for so long without actively pursuing

> treatment. (I bet a lot of you had similar experiences) Adding to the

> anti-doctor sentiment is the fact that she has already seen the guy

> who is apparently the preeminent specialist in our area (Dr.

> Summers in Salt Lake City UT) who prescribed her an overkill of

> various antibiotics that didn't help her. She actually did find one

> doctor that she felt cared and truly wanted to help, but then we

> changed insurance co's and she can't see her anymore. In the past she

> has been on various doses of amitryptaline (sp?) I think up to 75mg.

> She did not tolerate it well (drowsiness) and it did not help with

> the pain.

>

> Any advice is greatly appreciated.

>

> Also, once a long time ago I saw a men's VV/vulvodynia support group,

> but can't find it now. Does anyone have a website for that?

>

> Thanks,

>

> Tony

>

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October 9, 2002

Tony,

I had another thought. It is not necessary for your wife to have an

internal exam to get the estrogen cream. If you have the right doctor she

would not have to have a vulvar exam at all.

Also, it sounds like she has vestibulitus (inflamed glands). Which doesn't

help a whole lot since nobody knows why they become inflamed. But anyway

the way doctors usually diagnose this is with a q-tip test. Yeah you got

it. She takes a q-tip (I think it was wet) and touches the vulvar area

(around the entrance to the vagina). When the patient jumps off the table

in pain the doctor takes note of that location and if it is near where a

gland would be. Anyway you can do this or with a good mirror your wife

could do this for herself. Then you can go with a drawing of your wife'd

vulvar area and discuss this with a doctor and try to find one that can

treat you respectfully and discuss this problem intelligently.

Just a thought.