what helped me

[Guest guest]

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

[Guest guest]

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

>

[Guest guest]

LIa----I'm glad to hear that you are doing well. You HAVE had a long

road. I had a partial vestibulectomy four years ago and it enabled me

to have sex also. I also have some pain or irritation about 24 hours

later. Dr. Nyirjesy gave me a compounded cream about 6 months ago

which is amitriptiline/baclofen. His NP told me that they have a

patient whose husband is a pharmacist. He says that this pharm says

this preparation should not work. I also talked to my son's pain

specialist and he scoffed at it. I think it does help and Nyirjesy is

having lots of success with it even with those of us who have LS on the

outside!! Nyirjesy usually only prescribes things that are proven!!

Sandy

[Guest guest]

Millie----We always use almond oil for sex. Sandy