more for Cheryl, from

July 18, 2002

Cheryl,

I don't mind your long messages at all. This seems to be the place

where I can find valuable information. I have some more questions.

The whole pain with sex thing is a problem (espeically since I'm in

my mid twenties) and since it hurts EVERY TIME I never have the

desire. Did you ever find a " cure " that would help with the sex pain

when you weren't having a major flare up? For example, I can " feel "

that everything is fine but then once the " action " happens is totaly

flares it up and the cycle starts over again. Just wondering if you

have any thoughts on that.

About having the sample tested, my Dr's have done that every time.

They always take the culture (or whatever you call it) and then come

back and tell me what it is. But, just like you my outer symptoms

get SO BAD after taking all that yeast and bacterial medicine. I

never go in because I think I have an infection. I always go in

becasue of the outer, vulvar pain but they always manage to blame it

on an infection, which eventually makes the outer pain go away but

only to come back in a week or two sometimes even worse than before.

As far as I know, there are NO specialists in my area. I go to an

OBGYN clinic, have seen 3 different doctors, and none of them want to

listen to what I have to say about how all the creams and steriods

make it worse. It is very frustrating, especially when they act like

you are " half crazy " . They also love to tell me that some women are

just prone to things like this and that yes, they are a minor

inconvience. I'm serious, a Dr. really told me that. I don't think

they have any idea how BADLY it can hurt. I have a high pain

tolerence, I run marathons. I know how to manage pain and then I

know when something has to be done. Sorry, but I need to vent!

I went to the Dr. today (a different one) and he didn't do a culture

since I had one 2 weeks ago (now I'm wishing he would have) He just

kind of glanced down there, said he saw no signs of infection but

that he would give me an antifungual that had a steroid creme in it.

I asked him is this would help with the external pain and he said it

might. I just figured (bad idea) that since he was a doctor he would

look at my chart (very easy, all on computer right there in the room)

to make SURE that he wasn't repeating a prescription I'd already

tired. When I got out of the office and looked at the script it was

for Terazol, one of my WORST nightmare prescriptions ever. Had he

looked at my records he would have known that I still have an active

prescription for that and there is a reason why I'm not using it.

The last time I tried it it made me SO MUCH WORSE.

He also told me that during pregnancy if you have a history of

infections that they are likely to get worse due to all the

" changes " . But, he said that if I have a vaginal birth I might

stretch out the vaginal opening and get some relief. That sounds

kind of crazy to me. Did you have a problem throughout your first

pregnancy? This is my first, and I am overly paranoid about

everything and then I have this to top it all off.

About the anti-depressant. You take that strickly for this problem?

I don't think I have a problem with depression (although I might if I

can't find a doctor who will listen to me) and have never considered

taking any med. of that type. So it really works?

As of today, water and hand only to wash. I used to blow dry and

will start again. Also, I read somewhere to sleep with no panties

and I have been trying that. However, it turns on my husband which

is a problem considering I'm always out of comission!

I know someone who sells Amway. I wrote down all the info you gave

me and am going to call her. Do you know anything about taking the

fish oil during pregnancy? How long was it before you saw results?

My last question, any suggestions for the bad days when the burning

is so bad you can barely get out of bed? I've tried sitz baths and

ice packs which offer temporary relief but I'm open to any

suggestions.

Thanks for your time, I hope you are " cleared up " for now!

July 19, 2002

,

Reading your post makes me feel really P***D off at your doctor! If

he continues to view his patients as " minor inconveniences " he will

soon have no patients! It burns me up that while you're suffering in

pain, he's being " incovenienced " . This is NOT a psychological

problem. It's a real, geniune disorder. It's time to find a new

doctor. I'd suggest contacting the NVA for a list of referrals. You

may have to drive a distance to see a doctor. My specialist is 1-1/2-

2 hrs. away from me. When I was seeing my 1st specialist, I knew of

patients that flew in from out of state. Fortunately there are more

specialists out there now.

I was a virgin when I got married at age 19 & started vestibulitis

symptoms from the first time. I'm now 35. So I sort of know what

you're going through.

Right now, my best suggestion is to get the book, " Survivor's Guide

to Vulvodynia " . It has a lot of great information. It talks a lot

about the whole sex issue and I think it would help you a great

deal. It also talks about the partner's feelings--it's hard on them

too. When you think about it, they're dealing with causing someone

they love pain. I'm really getting a lot out of the book and I've

read A LOT on the subject.

We have a hard time with sex too. Most of the time, I want nothing

to do with it. Some of the time, my heart wants to do it and my

vulva is yelling, " Nooooooo " . Sometimes it hurts when we do it.

Other times it doesn't hurt at the time, but will hurt a day or more

afterward. Sometimes it just feels a little irritated, but

relatively ok. So I have no idea whether sex will lead to a week of

misery afterward. Recently we had about 1-1/2 weeks of great sex.

While to " normal " women, we probably had an average amount of sex, to

us, it was more sex than we've had in the past year (I'm sure you all

know what I'm talking about!) To be honest, I wanted it all the

time, since it didn't hurt too bad and I figured it wouldn't last

long. I was right, it didn't last long. I plunged into a yeast

infection, spent the last 2 weeks feeling awful with that & am now

having my first massive period coming off the birth control pill. (I

was put on the pill for heavy bleeding about 3 years ago & my dr.

took me off to see if it improves the yeast situation).

I do use AstroGlide lubricant & was advised to coat all surfaces (him

& you). That helps a lot. It's been recommended to me to use a

numbing cream (zylicain?--don't know if I spelled that right) but it

irritates me to high heaven, so I don't do that. It's also been

suggested to use an ice pack afterward, but I haven't tried that

yet. Mostly because it doesn't seem the thing to do after having sex

(..was it great for you? I'm getting an ice pack...) LOL! I do use

the bathroom afterward, rinse off with a squirt bottle of water &

blow dry (like that's any better than going for an ice pack).

Regarding your doctor giving you anti-fungals, etc. when he sees no

sign of infection...that's just nuts, in my opinion. It's like going

to the doctor & them saying, I'm positive you don't have strep

throat, but here's some pennicililn anyway. He's just trying to

pacify you so you won't come in again. If you are certain you do not

have an infection, do not put cream on your vulva. Give it a week

and see if it feels any better. My skin just has to heal up on it's

own. Our skin doesn't act like normal skin when we get infections.

The infections freak out the Vulvodynia, nerves mis-fire and our skin

feels awful. I find it takes 1 week from the time I am totally free

of the infection, before my vulvodynia starts to calm down from the

infection.

The anti-depressant I take (Desipramine) is taken for pain management

of the vulvodynia. The tri-cylic anti-depressants interrupt the

miscommunication from our nerves to the brain. The goal is to break

the cycle and sort of " reset " the system. Some women are able to get

off the anti-depressants after awhile. The dosage is much smaller

than the dosage given for depression. Also, the tri-cylics are the

older depression medications & actually don't work that great for

depression so they're really not used for that much anymore. I did

have an issue with taking anti-depressants at first. But, I decided

being out of pain is worth it and it really isn't a big deal anyway.

If you ask around, you'd be surprised the the number of people on

anti-depressants (for depression) anyway.

The Ocean Essentials product (Amway) is called " Balanced Health " . I

just got it yesterday. It has a slightly different mixture of things

than what I was previously taking (Shaklee). This one has an equal

proportion of EPA and DHA and includes Vitamin E. I will let you

know how I like it. I will check with my brother in law, who is a

doctor. His wife (my sister) is pregnant almost constantly and takes

their vitamins instead of pre-natal vitamins, but I don't know if she

took the fish oils. Remember that you can also get the oils from

eating fish. In fact, my mother in law makes awesome salmon patties

& my skin always feels better the day after we've had them for dinner.

I'm trying to go back and re-read your message so I answer all your

questions. As far as dealing with the bad burning, horrible pain...

First, I try to remain as calm as possible. The bad burning usually

doesn't continue forever. I often tell myself that by this time next

week, I will feel better which helps me deal with the panic & despair

I sometimes feel during those times. I also try to remember all the

self-help things---no soap, blow dry, pat w/toilet paper when using

the bathroom (instead of wiping), no creams, no underwear at night.

I try to wear baggy clothes or skirts. I also take a lot of warm

baths because that feels soothing to me.

Right now I'm trying to stop getting yeast & bacterial infections. I

feel this really, really sets me back. With the anti-depressants,

I'm now having periods of time where I really feel pretty normal. I

think if I could ward off the infections, I could have longer &

longer " normal " times. I feel like this would be progress. I also

feel that we have to be our own advocate. Another thing that I'm

going to check into is biofeedback. Maybe it will help and maybe it

won't. It shouldn't make me worse, so there is nothing lost by

trying it.

I hope I've answered your questions. Let me know if I can answer

anything else.

-Cheryl

July 19, 2002