Had enough!!!

May 1, 2004

Hi everyone, I am a new member But I am not new to the pain. I have

had vulvar pain for almost 5 years now. It started right after my

hysterectomy. I am 34 years old. I have been to every kind of Dr.

you can think of I have been poked and proded to the hilt. I went

to a vulvar specialist this past week and she was my last hope.

After spending almost 3 hours in the office and only seeing her for

about 15 minutes of that time. She looked and since she didn't se

anything unusual, she too doesnt seem to think anything is wrong.

She didnt take me seriously. I give up! I told my family Dr. no more

doctors but him! No more needles! I have Pudendal Nueralgia. My

clioral nerves are damaged to the point where it hurts all the time

and it keeps me up nights and totally destroys my days. He was the

first of about 15 doctors who took the time to do research on the

subject. I found out most of the information myself. I even talked

to specialist in 2 different states. I was wondering if anyone in

the group had anything close to this or knows anyone who does. I am

currently on Vicoden and Topomax. My family doc is sending me to one

last pain clinic, on the condition that they don't want to put

needles in my vagina . To perhaps try a low, low dose pain patch of

some sort. I am so tired of taking pills all the time. I have 2 kids

and I don't like the way the pills make me feel. I appreciate any

suggestions or information that anyone has to offer

Thanks so much

May 1, 2004

Hi kid, listen, I don't fully understand what is

causing your pain, but I was on elavil which is

for nerve pain for years and it worked. Just an idea.

Ask your doctor, hope I havent' adivsed and said something I shouldn't. I

am new and see there is

an issue about giving medical adivce. I am only

telling you what worked for me.

I don't know where you live, but try and go to

a big university hospital if you can, you will find

that all these other doctors don't know a thing.

This is rare. Call the Universtiy Hospital in the state you live. Hope

this has helped.

Had enough!!!

> Hi everyone, I am a new member But I am not new to the pain. I have

> had vulvar pain for almost 5 years now. It started right after my

> hysterectomy. I am 34 years old. I have been to every kind of Dr.

> you can think of I have been poked and proded to the hilt. I went

> to a vulvar specialist this past week and she was my last hope.

> After spending almost 3 hours in the office and only seeing her for

> about 15 minutes of that time. She looked and since she didn't se

> anything unusual, she too doesnt seem to think anything is wrong.

> She didnt take me seriously. I give up! I told my family Dr. no more

> doctors but him! No more needles! I have Pudendal Nueralgia. My

> clioral nerves are damaged to the point where it hurts all the time

> and it keeps me up nights and totally destroys my days. He was the

> first of about 15 doctors who took the time to do research on the

> subject. I found out most of the information myself. I even talked

> to specialist in 2 different states. I was wondering if anyone in

> the group had anything close to this or knows anyone who does. I am

> currently on Vicoden and Topomax. My family doc is sending me to one

> last pain clinic, on the condition that they don't want to put

> needles in my vagina . To perhaps try a low, low dose pain patch of

> some sort. I am so tired of taking pills all the time. I have 2 kids

> and I don't like the way the pills make me feel. I appreciate any

> suggestions or information that anyone has to offer

> Thanks so much

>

> *****END OF MESSAGE/REMOVE WHEN REPLYING*****

> --------------------------------------------Yahoo members can go to:

> http://groups.yahoo.com/group/VulvarDisorders

> to search our archive or view our files.

>

> ***

May 1, 2004

In a message dated 5/1/04 11:16:59 AM, VulvarDisorders writes:

<< It started right after my hysterectomy. >>

Hi ,

Do you still have your ovaries? An hormone imbalance could be making the

pain worse.

Was your hysterectomy vaginal? Several women have attributed their vv/vvs

with nerve damage done during vaginal hysterectomies. I'm assuming that's when

your pudental nerve was injured.

<< My clioral nerves are damaged to the point where it hurts all the time and

it keeps me up nights and totally destroys my days.>>

Have you tried Neurontin? It's similar to Topomax. I know you mentioned

that you were tired of taking pills and Neurontin does require diligence, since

one has to take it 2-4 times a day.

Kristy is having some luck with nerve blocks, have you tried that? I think

hers are injected through the vulvar area which you said you want to avoid, but

other women have mentioned theirs are injected through the lower back. I

would not suggest surgery to sever the nerve to the clitoris. A woman on

another

list did that and ended up in even worse pain, the wrong nerve was severed.

Pain patches usually do not come close to touching nerve pain. If Vicodin

isn't doing much, you probably won't have much luck with a low dose pain patch.

What dose are you taking of the Topomax and how long have you been taking it?

I'm going to assume the dose has to be escalated like Neurontin does until

you find a level that works for you. Have you tried combining it with Elavil?

Some times a combination of nerve signal disrupting drugs works best.

And Ora took a drug that had Atropine in it that solved her clitoris pain. I

can never remember the name of it. It might be Urised.

There are several women on the Vulvodynia lists with clitoral pain, you may

want to post to that list and see if anyone has any other ideas. I know Jac

has had some clitoral pain reduction in the past few months but I don't remember

exactly what treatment she has been following.

Good luck with the pain clinic.

Debbie

Tiger

May 2, 2004

Michele, Can u be evaluated at a Women's Therapy clinic for physical

therapy in the pelvic area? Please consider that, it may well help

reduce the pain you experience. Many women use antiseizure meds to

control nerve pain - is that what Topamax is?

So do you think that nerves were damaged during the hysterectomy

procedure?

Dusty