/ Re: is there hope for those with longterm VV

[Guest guest]

My pain is also related to nerves. The Valium helps a lot, but I

try not to take it every day. I take it if I need to do something out of the

ordinary day. As I have to lie down all day, but on occasion, when I have to go

somewhere, or someone comes over, etc.., I will take one.

I take 3600mg of Neurontin, and I have been on it for two years,

and as far as I can tell, it does not help at all. But as I been on it for so long,

my doctor does not know what will happen if I go off of it. (maybe I might have

even more pain, if that is possible), so he wants me to just keep taking it. I

wish it worked for me as well as it does for you. I am starting with a new

vulvar specialist next week, so I am very interested in hearing if she has any

more suggestions on what to do.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Mace

Sent: Thursday, April 03, 2008 7:10 PM

To: VulvarDisorders

Subject: Re: is there hope for those with longterm VV

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

>

>