Re: Request for Research participants

[Guest guest]

Hi Everyone -

I'm new to this group, my name is beth - I am now 26 years old and

have had vulvodynia for 12 years but was only diagnosed last year. The

disorder has caused extreme physical and mental stress in my life and it

was a " blessing " to finally have a name for my pain. Throughout college

and after I visited MANY doctors and told them of my " burning " menstrual

cycles and unbearably painful sex. I got a variety of responses but most

just told me that I needed to use more lubrication during sex or that I

had some hang-up about sex and needed counselling. It was so

frustrating! I knew there was something physically wrong with me.

Finally I went to a doctor who had heard of this disorder and referred

me to an allergist and also, Dr. Melmed. The allergist was completely

unhelpful (I know my skin is sensitive and that I have some food

allergies) - Dr. Melmed had a patient several years ago who developed

this disorder after the birth of a child and since then he has been

treating women with this condition.

On my first exam he did a culposcopy (sp?) and had it on a monitor so I

could see what was happening - I remember it was during my period and I

was wearing a tampon and I saw a large spot of BRIGHT red and I thought

" Oh God, how embarrassing - I am leaking through " . It wasn't blood - it

was the actual color of my tissue! I have tried a low ox diet and have

not notice much improvement, I have just started taking Citracel... I

don't know if that will help. In the past I have tried steroid creme and

it seemed to aggravate the condition. I am willing to try just about

anything to be able to have sex without having to go into the bathroom

after for an hour to soak and cry. I have a wonderful boyfriend who is

very supportive... he is willing to please me in " other ways " and NEVER

pressures me. He is in Viagra so we are a good couple *grin*.

I hate wearing jeans (thank goodness I rarely do), I can't wear pads

just tampons (once I get them in I'm okay), I always feel " hot " and

itchy and it is always on my mind... during work, during school, even

during activities like skiing. I know my symptoms are not a bad as some

of yours and I am thankful. I have never known an adult life without

physical discomfort and pain but I am working toward it! I have had

stretches of several months with little or no pain but I have no way to

predict when that will happen. At this time last year I was feeling

fairly good but the last 5 months (and currently) it has been really

bad!

Thanks for listening (by the way, I only access the internet during the

week),

beth

[Guest guest]

I would like to participate in your research on vulvodynia.

a

[Guest guest]

<<I have tried a low ox diet and have

not notice much improvement, I have just started taking Citracel... I

don't know if that will help.>>

I am not sure if meant to write 'Citracel' or not? Correct me if I

am wrong, but I believe this to be a stool softener. Is this what one should

take while on the low-oxalate diet or is it Calcium Citrate supplements with a

similar name?

B-C, dx in 7, POC, IC

mailto: ZipSkpChia@...

[Guest guest]

Citrical is the calcium pill for low oxalate diets.

Alice

[Guest guest]

Oops... I meant to Citracal (calcium citrate)

beth

[Guest guest]

Dear Ladies,

This is Aimee DuBois, from Central Michigan University. As many of you may

remember, I posted a message last fall asking if anyone would be interested

in participating in my research for my thesis. Since then, many new members

have joined and I wanted to post the message again.

I am a vulvodynia patient who is also a graduate student in the

communication department at CMU. I am currently working on my thesis which

is looking at how couples cope when things such as vulvodynia, IC, chronic

illness, etc enter into their lives. This research is important because it

is a highly underresearched topic and would provide the many sufferers of

such disorders with more literature to help them through the healing process.

I am planning to do interviews on-line with people who would like to

participate. I am also wanting to interviw couples as well as individuals,

so if your partner is interested, it would greatly help broaden the scope of

my research.

Because I am doing interviews on line, I have been searching for a venue

that would provide a means for quick responses with privacy for anonymity.

So far, the best I can find is America On Line Instant Message Service. For

those with AOL, you already have access. For those that don't, you can

download the instant message service at no charge.

I am planning on starting interviews soon and would like to guage how many

of you are interested and if you would be willing to get access to AOL

instant message service if I told you how to do it. For those that have

already responded to this request, please tell me if you would be willing to

get the service too.

I appreciate any responses as soon as possible. I value your willingness to

particpate and would be happy to share my results with any who participate.

Hopefully, I'll get published too.

Please contact me for more information, aimee.d.dubois@...

Thank you to all and stay healthy!

Aimee DuBois