is there hope for those with longterm VV

[Guest guest]

A unanimous " no " from the medical community.

I have many complaints about the different medical professionals.

There isn't room to air them all here!

The worst was the guy I had doing hypnotherapy who told me that I was

lying about my pain level and when I started crying started yelling at me.

But one comes from the people who really know VV, such as Dr. Hope

Haefner and Dr. Deniz Zolnoun and Dr. Libby .

They said that because I had it for 14 years, I would not ever be

cured/pain free/normal sex, etc.

The longer you have had it, the less likely it is to ever cure. I

don't understand exactly why. Because your nerves in your spinal cord

are permanently trained?

[Guest guest]

, if you are talking about “nerves” from the

spinal cord – that is the pudendal nerve that is compressed that is

causing the Vulvodynia/vestibulitis. But not all VV problems are caused by

spinal cord nerves, so that doesn’t mean that is your problem.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Mace

Sent: Wednesday, April 02, 2008 11:29 AM

To: VulvarDisorders

Subject: is there hope for those with longterm VV

A unanimous " no " from the medical

community.

I have many complaints about the different medical professionals.

There isn't room to air them all here!

The worst was the guy I had doing hypnotherapy who told me that I was

lying about my pain level and when I started crying started yelling at me.

But one comes from the people who really know VV, such as Dr. Hope

Haefner and Dr. Deniz Zolnoun and Dr. Libby .

They said that because I had it for 14 years, I would not ever be

cured/pain free/normal sex, etc.

The longer you have had it, the less likely it is to ever cure. I

don't understand exactly why. Because your nerves in your spinal cord

are permanently trained?

[Guest guest]

,

I've had VV as far back as a I can remember (my first tampon - 17 yrs

ago). Rhonda K told me that it will take awhile to fix that, though

it is possible. That was even before she started working on me.

Now, my pain has only ever been contact pain, but just

going " commando " has stopped 99.9% of my pain within a week or two.

The skin rolling is still incredibly painful, so I know that I have

connective tissue issues, but I am just saying all of this, so that

you know that there can be hope even when it has been a really long

time.

in IL

>

> A unanimous " no " from the medical community.

>

> I have many complaints about the different medical professionals.

> There isn't room to air them all here!

>

> The worst was the guy I had doing hypnotherapy who told me that I

was

> lying about my pain level and when I started crying started yelling

at me.

>

> But one comes from the people who really know VV, such as Dr. Hope

> Haefner and Dr. Deniz Zolnoun and Dr. Libby .

>

> They said that because I had it for 14 years, I would not ever be

> cured/pain free/normal sex, etc.

>

> The longer you have had it, the less likely it is to ever cure. I

> don't understand exactly why. Because your nerves in your spinal

cord

> are permanently trained?

>

>

>

[Guest guest]

Yeah, I have the " constant burning " which is a sign that my nerves

have become trained to continue sending pain, and my muscles have been

trained to go into a spasm.

Still, I have high hopes from my physical therapist, in addition to

possibly trying Ativan to make my Gaba receptors work better. I know

that my pain is related to Gaba because Neurontin works really well

for me.

>

> ,

>

> I've had VV as far back as a I can remember (my first tampon - 17 yrs

> ago). Rhonda K told me that it will take awhile to fix that, though

> it is possible. That was even before she started working on me.

> Now, my pain has only ever been contact pain, but just

> going " commando " has stopped 99.9% of my pain within a week or two.

> The skin rolling is still incredibly painful, so I know that I have

> connective tissue issues, but I am just saying all of this, so that

> you know that there can be hope even when it has been a really long

> time.

>

> in IL

>

>