Re:to Seema-

[Guest guest]

Daphne,

I appreciate what you are saying, but as I told Melinda, I just

can't do anything. The pain is too great and it's all the time. I

can't even have him touch me there let alone even have sex for 2

minutes. Somebody told me that it's time that I just accept that

I'll have to live in pain and try to manage the symptoms - I am

starting to think she is right. Doesn't mean I'm going to stop

searching for a cure, but I don't ever feel I'll be able to live my

life as I once did. I get so angry as this happened right before I

was going to join a dance troupe - why then, when I would have been

able to travel with them and dance - now, I try to dance for a minute

and boom, too much pain.

I am glad you had fun with your husband. I still laugh with my

boyfriend, it's just that we are really active and love to do things

like travel and hike and dance - it's such a 180 from our old life

and I have tried hard and pushed myself to do those things, but it's

always a disappointment when I can't do it at all. I appreciate your

words. Take care.

Love,

Seema

> Seema

> i was talking to my husband this am and thinking the same things

that melinda said about getting up and doing things anyways, when I

sit around and concentrate and feeling cursed I am much worse,

Myhusband took me to dinner and a movie last night and we talked

about how much fun it was falling in love with eachother when we were

both at pretty low points in life and definatly not looking for what

we found, I smiled so much and he made me laugh so hard ( he's very

obnoxious in a good way) that my face hurt!! Yesterday started out

being pretty ugly for me vulva wise and ended up having awsome sex

last night and feeling alot better today?? maybe there is something

to be said for laughter being good medicine and feeling relaxed and

loved and possitive is good therapy too!!

> I also learned last night that he feels responsible for this

feels he was a catalist because it started about 6 weeks into our

sexual relationship. I am sure he had nothing to do with it, but I

can see that it has affected us both very deeply. We had a really

cool thing that was great for both of us stolen away by this. He is

intent on helping me fix this and reminds me not to give in, not to

let it win.I am thankful for his love and support as well as yours

and the rest of our friends here. There is an answer don't quit

looking. Continue to live your life and enjoy things even when you

don't think you can. being buzy sometimes takes your mind off it.

> love, Daphne

> Re:to Seema-nerve ending

>

>

> Seema,

> I too have less burning during my period. I didn't know anyone

else did too.

> But it makes sense what Suzy said about it.

> Remind me again, what are your symptoms? Is it just burning all

the time, or

> also hurts when touched. I can relate to your frustrations.

Everytime you

> see a new DR. and get your hopes up, and boom it doesn't work.

Did the

> natropath help any, is that the one doing acupuncture. It is so

> disappointing and easy to give up. But don't. For me, ever since

I was

> diagnosed with VIN and had surgery to remove it last Sept.(the

burning

> problems started almost a yr before the surgery) and the dr and I

thougth

> mabe the two were related and the pain would go away after the

surgery, well

> it didn't and I was very frustrated. More importantly as much as

I want a

> cure and for this burning to go away, I am more focused on the

VIN, b/c

> cancer can actually take your life, I go back for another colpo

in May and

> its so scary thinking about what if they detect more VIN(pre-

cancerous

> cells). So as much as I am tired of this burning crap and how it

consumes my

> thoughts so often, I have to remind myself that it could be

worse. After my

> surgery I was so pissed that the burning didn't go away, but then

I realized

> that I was looking at it all wrong, atleast they detected the VIN

and

> removed it and hopefully it will never come back. Vulvodyina/VVS

and all of

> this is so depressing, frustrating, etc. etc. esp. since there is

no known

> cure or cause, but atleast it's not a terminal disease(that we

know of).

> There people out there who have no choice to choose life or

death, b/c of a

> terminal illness. Fortunately we are not in that boat-So don't

give up keep

> a ray of hope that this will get better. As far as not doing

things w/

> friends b/c you don't feel like it, unless you really feel too

bad to do

> anything I think the more normal you make your life and don't

conform it to

> all of this the better off you are. For me anyways, its often

mind over

> matter. When I obssess about it and feel sorry for myself it

seems to hurt

> more and I don't want to do things. Try to go out and have fun

anyways,

> that will take the focus off all the bad things, and you might

just forget

> about it for a little while. I think if I am gonna be hurting I

mise well be

> out doing something then laying around, b/c it will still hurt

then too.

> Don't give up. Live has so much to offer and you have so much to

give.

> Love,

> Melinda

>

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