what helped/my diagnosis

[Guest guest]

Yes... My diagnostis was vestibulitis but I had 24/7 pain. And I really

questioned this,

because I thought if you had 24/7 pain that meant you had DV. But I was told

that if your

pain is confined to the vestibule (as mine was) it's vestibulitis. DV--I was

told--means

pain in a larger area. The thing that most worsened my pain was sitting for a

long time. I

did ultimately have surgery anf when I did, I was told that my diagnosis may

have been off.

Vestibulitis is defined as " primary " (you know you have it from first sexual

encounter) or

" secondary " (you've had painfree sex UNTIL you get it). Before the pain

nightmare started

for me, I hadn't had a lot of sex in my life, but I'd had some. I would not

have called it

painful, but it was never totally comfortable. So... Was I a primary or a

secondary? I don't

know. The only reason it matters is that some docs think primary v patients

have the best

results from the surgery.

Lia

> Lia--

>

> Thank you for sharing this. It really helps. I am just in that place

> where I am hanging on and just trying to make it to the next day with

> this....

>

> I refused the tricyclics for a long time but I think I am going to

> give them a try. After 2 years of 24/7 pain, I'm up for anything,

> except surgery.

>

> I think I am realizing that no one thing is going to be the fix, so

> like you said I'm trying to be patient at this point and put all the

> pieces together.

>

> One more question for you---you say you were dxed with

> vestibulitis....did you have 24/7 pain but only in the vestibule? That

> is what I have...

>

>

>

> >

> > I had a really long road, but I am doing really well now. I really

> think you have to be

> > patient and pushy (as contradictory as that sounds). Give

> treatments a chance, but don't

> > be bullied by doctors who say you're out of options. Doctors, in my

> experience, don't like

> > to seem ignorant, so they'll sooner say " there are no other

> treatments " than " there are

> > options I just don't know about. " In my case, there was not one

> treatment that did the

> > trick--I needed a combination. My onset was a common one: a year of

> repeated infections

> > (yeast and bv) that were treated with topical meds that I think did

> me harm. When I finally

> > got diagnosed, my diagnosis was vestibulitis, but I had 24/7 pain.

> Tricyclic

> > antidepressants made a big difference for me in terms of 24/7 pain

> (elavil particularly),

> > but didn't help contact pain. So I actually got to a point where I

> was on a tricyclic and

> > pretty comfortable as long as I didn't have sex. So I had a

> vestibulectomy (after getting a

> > couple opinions) and the surgery enabled me to have sex w/o pain.

> BUT... at the end of all

> > of this (3+ years) my pelvic muscles were in really bad spasm. So I

> did a lot of PT and I am

> > actually still doing it. That I am still doing PT is my fault,

> really. After I worked on my

> > pelvic muscles in PT I was told I really had tp strengthen the

> surrounding muscle groups--

> > abs, butt, lower back--to keep my pelvis happy, and I have been lazy

> about doing that. So

> > I went back to pt recently to try and work on this. I have some

> issues with pain after sex

> > (not immediately, but like a day or 2 later) which I'm trying to

> sort out. But sex itself is not

> > painful and I feel like this after-pain is something I can figure

> out and manage. If you're

> > feeling hopeless... This is just my opinion, but I think it's really

> important to do these

> > things if you can: See a vulvar specialist, see a pt with

> experience in vulvar pain, join the

> > NVA. It's like $40 and you get a doctor list and a support contact

> in your area and a really

> > informative newsletter. Don't give up and try (I know it's hard)

> not to sink into despair

> > because I really think it worsens pain.

> >

> > Lia

> >

>