(no subject)

January 29, 1999

a,

So far, I haven't had PT. At the time of my exam, my muscles were not

tight and I was having no burning, which was most of the time constant

for months and months before that day. I think that day I wasn't

burning because I had only slept about two hours the night before and I

was just too tired to get stressed out. I've had fibro for 25 years, so

I know about tense muscles, and nothing hurt that morning.

I was put on Desipramine, an anti-depressant. I had taken Elavil for 15

years, from 1980 to 1995. I thought I didn't need it anymore and

stopped taking it. The symptoms started about a year and four months

after I quit taking Elavil. In 1995, my dad died, my daughter started

running away, doing drugs, dropped out of school (at age 14), and I got

a divorce about a year later. Surprisingly, I felt great physically in

1995 and 1996, but in 1997, I started falling apart.

I'm also using Estrace twice a day. I have Xylocaine, which I don't use

much because it didn't seem to help. I'm also taking Calcium Citrate,

although I quit taking it the last few days in case it's contributing to

my kidney stone.

Anyway, I see the PT at my next visit in a month. Just knowing that

pelvic muscles can cause the burning has caused me to really try to

relax the muscles on my own. I learned to do it with my neck and back

after many, many years, but I do think I have to be on an

anti-depressant whether I like it or not. Maybe if I had never quit

taking the Elavil, I wouldn't have gotten the vulvar pain. Who knows?

Good luck,

Joanne

January 29, 1999

a,

So far, I haven't had PT. At the time of my exam, my muscles were not

tight and I was having no burning, which was most of the time constant

for months and months before that day. I think that day I wasn't

burning because I had only slept about two hours the night before and I

was just too tired to get stressed out. I've had fibro for 25 years, so

I know about tense muscles, and nothing hurt that morning.

I was put on Desipramine, an anti-depressant. I had taken Elavil for 15

years, from 1980 to 1995. I thought I didn't need it anymore and

stopped taking it. The symptoms started about a year and four months

after I quit taking Elavil. In 1995, my dad died, my daughter started

running away, doing drugs, dropped out of school (at age 14), and I got

a divorce about a year later. Surprisingly, I felt great physically in

1995 and 1996, but in 1997, I started falling apart.

I'm also using Estrace twice a day. I have Xylocaine, which I don't use

much because it didn't seem to help. I'm also taking Calcium Citrate,

although I quit taking it the last few days in case it's contributing to

my kidney stone.

Anyway, I see the PT at my next visit in a month. Just knowing that

pelvic muscles can cause the burning has caused me to really try to

relax the muscles on my own. I learned to do it with my neck and back

after many, many years, but I do think I have to be on an

anti-depressant whether I like it or not. Maybe if I had never quit

taking the Elavil, I wouldn't have gotten the vulvar pain. Who knows?

Good luck,

Joanne

January 29, 1999

a,

So far, I haven't had PT. At the time of my exam, my muscles were not

tight and I was having no burning, which was most of the time constant

for months and months before that day. I think that day I wasn't

burning because I had only slept about two hours the night before and I

was just too tired to get stressed out. I've had fibro for 25 years, so

I know about tense muscles, and nothing hurt that morning.

I was put on Desipramine, an anti-depressant. I had taken Elavil for 15

years, from 1980 to 1995. I thought I didn't need it anymore and

stopped taking it. The symptoms started about a year and four months

after I quit taking Elavil. In 1995, my dad died, my daughter started

running away, doing drugs, dropped out of school (at age 14), and I got

a divorce about a year later. Surprisingly, I felt great physically in

1995 and 1996, but in 1997, I started falling apart.

I'm also using Estrace twice a day. I have Xylocaine, which I don't use

much because it didn't seem to help. I'm also taking Calcium Citrate,

although I quit taking it the last few days in case it's contributing to

my kidney stone.

Anyway, I see the PT at my next visit in a month. Just knowing that

pelvic muscles can cause the burning has caused me to really try to

relax the muscles on my own. I learned to do it with my neck and back

after many, many years, but I do think I have to be on an

anti-depressant whether I like it or not. Maybe if I had never quit

taking the Elavil, I wouldn't have gotten the vulvar pain. Who knows?

Good luck,

Joanne

January 29, 1999

You mentioned a UCLA doc you are seeing. I'm near you, can you tell me the

name of your doc? Thanks!!!!! Lainey

January 29, 1999

You mentioned a UCLA doc you are seeing. I'm near you, can you tell me the

name of your doc? Thanks!!!!! Lainey

January 30, 1999

Hi Lainey,

Please see the letter I just wrote to . It's Dr. Rapkin whose in

charge. If you don't see it, write me back.

Joanne

January 31, 1999

Hi All:

I haven't offically introduced myself on here as it's taken me a bit to get

used to AOL from Prodigy.

I'm so grateful for learning about this list. Thank you Darlene!!!!

I had bladder infections when I was 11. I had them again when I was married. I

got divorced in 1979. Then I seemed to go along just fine until 1987 when I

met a guy who seemed to keep giving me yeast and bladder infections every time

we made love. We had used condoms for a while until the AIDS test came back

negative. Once the condons came off I was introduced to VV, but at the time

didn't know anything about it. I went from doc to doc. Every creme you can

think of, every yeast medication. I was left with non stop yeast by the time I

was ending that relationship. The yeast diet saved my life and I'm yeast free

now and was for 7 yrs before this last relationship. I can remember the first

time with VV laying at a park on fire wishing I could air myself out. It was

so miserable.

I finally came down with CFS around this time. This was when I first had

orgasms that hurt. Sex didn't, but afterwards it would hurt for days on end. I

stayed sex free for a long while and then I met someone who didn't seem to

flare it that much or I wasn't in too bad of shape at the time. Theory is

still out if men trigger this or not, huh? For me, it seems to be men. I would

get constant raw feelings and I just thought they were yeast infections. At

this point I was sick of gynos so purchased a natural substance called Bee

Kind that seemed to soothe me for a few days, allowing me to have sex again.

It is made up of Aloe Vera and honey inserted inside. This seemed to let me

have a sex life at the time. Then we broke up and I was sex free for 7 yrs. I

was in too much pain at this point with no help, no answers. Bee Kind was

starting to sting so that was out. Finally my gyno thought I had HPV and

treated me for that with an at home medication. I got a bladder infection and

never went back to treating myself with it.

So on and off for years it was always raw and painful and IC pain. It seems to

get worse around ovuation and before my period. I never feel normal. My

symptoms were always here to remind me something wasn't right. However, I have

memories of sex without pain years ago and I want that back!

Although nothing was as bad as that time in 1987 with that guy. UNTIL now. I

had a new boyfriend last year. Again bladder, yeast and then burning off of

what she thought was HPV. This time she did it in her office. Now I am in

constant pain in the urethra area/ck as well as VV. It never goes away. I

still get bladder infections too, which before this last guy I was just having

IC for 7 yrs and no infections. I feel scared of the road ahead. I ended this

relationship. I am single. 45 and have one son, 24. I can't look at men in

fear that dating means sex and sex is too painful. I also relate it to bladder

infections or, after we make love they are all content and I'm in pain for

days and days.

This list has helped me so much. I will be sending away for the kit

when I get some money. I'm disabled with CFS so money is low. So far I'm

taking Calcium Citrate on my own and was given Estrac (sp?) creme to apply,

but haven't yet.

Hope this wasn't too long. Thanks for listening! Lainey

February 15, 1999

SIGNOFF *

February 20, 1999

Hi everyone!

This is the first time that I have replied to any of the lists responses.

This is mainly because it takes a long time to sort through all of the list e-

mail that I get. However, I realize that by reading these e-mails I have

found some useful information.

Anyway, I wanted to say something about male doctors, because I get the

feeling that most women are against them. I live in a smaller city in

Wisconsin and when I moved here I thought that the healthcare would be

terrible. However, one of our medical centers was just rated in the top one

hundred in the country, which is pretty good for a town of 51,000.

I have a male doctor from whom I have had nothing but the best of care. I

started seeing him for fertility problems and then he remained my obstetrician

for the birth of my daughter. Shortly after the birth I realized that I

wasn't healed and that was the beginning of my vulvar vestibulitis. My doctor

came right out and told me that there was not all that much information on it,

but that he would try to find anything and everything to help me. He

suggested that I search the internet and he told me to send him any

information that I find, and he does the same for me. He's been so

compassionate and empathetic to my situation. I really respect him.

I guess the reason that I'm writing this is that I have had nothing but bad

experiences with women doctors and I think it all depends on the doctor, not

their sex.

I'm feeling a lot better than when I first had symptoms two years ago. I've

tried steroids and I had a portion of the affected area removed. That made a

huge difference... the difference between not being able to sit on hard chairs

or on the floor, to being able to ride for 12 hours in a car. I still have

pain during intercourse and during my period, as well as when I'm in a

squatting position, but I'm optimistic for more remedies and eventually a

cure!

February 20, 1999

In response to 's Male Doctors:

I'm glad you posted . I had horrible experience with male gynos and I

switched to female's thinking they would understand. Well, it was worse!!!! I

came to the decision you just posted, it's the doc, not the sex. All I can say

is if you are with a doctor who is uncaring, leave. I tended to stay and

realize now it was only harming me mentally and physically. Lainey

February 23, 1999

I'm still new to this list and I was wondering if most of you have told family

members, friends, etc. about your VV and/or other problems?

Only my husband knows everything (Obviously!) and my sister knows that I was

having problems with my episiotomy. I think she thinks that it all over. I

just don't volunteer any information. It's not like it's a subject easily

breached at the dinner table.

On another note. I think I'm feeling a lot better. I say " think " because

I've been wary of thinking that lest I get worse all over again. I haven't

been on any drugs or used any creams or anything for a long time. It has been

a year and a half since I had a portion removed surgically. Now I think it is

more psychological than anything. My husband and I are planning to have

intercourse in the next week or two. It will be the first time in 10 months.

I guess I'll have to wait and see how I feel after that.

I hope that more people are able to feel better too. Otherwise I feel guilty

about posting this message.

February 23, 1999

I'm still new to this list and I was wondering if most of you have told family

members, friends, etc. about your VV and/or other problems?

Only my husband knows everything (Obviously!) and my sister knows that I was

having problems with my episiotomy. I think she thinks that it all over. I

just don't volunteer any information. It's not like it's a subject easily

breached at the dinner table.

On another note. I think I'm feeling a lot better. I say " think " because

I've been wary of thinking that lest I get worse all over again. I haven't

been on any drugs or used any creams or anything for a long time. It has been

a year and a half since I had a portion removed surgically. Now I think it is

more psychological than anything. My husband and I are planning to have

intercourse in the next week or two. It will be the first time in 10 months.

I guess I'll have to wait and see how I feel after that.

I hope that more people are able to feel better too. Otherwise I feel guilty

about posting this message.

February 24, 1999

Hey ....I told my mom about the problems I am having (we are real

close) and it was an interesting conversation. She disclosed some of the

similar difficulties that she was having and felt validated by our

conversation. Over the years, my mom has compenstated for the burning and POC

and just thought it was a natural thing(I suppose her tolerance is a little

stronger than mine!!) I talked with my doctor about this interesting

revelatin and she seems to feel that there is a family history component when

all other issues such as the HPV one is ruled out. She has done some research

on the issue and is formulating some theories on the whole familial aspect.

As far as others are concerned, I have not told anyone else, other than the

hubby, as I am just not comfortable. Isn't this an interesting issue though?

If we were talking about cancer or

February 24, 1999