Re: Hello...I'm new here!

[Guest guest]

Hi Misty,

Thanks so much for responding to my message! It feels so good to be able to talk

with someone else who is suffering from vvd. I'm glad that PT has been succesful

for you and hope that I find this as well. Could you tell me more about the

internal massage that you've been getting? I haven't gotten to that point in my

therapy yet. Does it hurt or do you have to " build up " to it? Also, how long and

often have you been going to PT? I hope you don't mind all my questions....I

know I'll probably have more!! Thank you so much again.

[Guest guest]

Hi -

My name's Misty- I'm 22, and have had vulvar vestibulitis since Aug

2001. It was a kind of sudden onset, after what I think was a yeast

infection. My doctor started me on PT which I've been doing for about

2 months, and I've had 85/90% improvement. It sounds like I do mostly

the same things in PT that you described- biofeedback, massage

(internal) and pelvic floor exercises. Also alignment work- I've

gotten to the point where I can feel when my pelvis and back are out

of alignment, so my pt does resistance work to straighten me out.

PT has definitely gotten me down the right road, since I wanted to

avoid taking medications if possible. I have found, though, that how

I feel is contingent on how much work I do. I have to do pelvic floor

exercises and other abdominal strengthening exercises almost every day

to be able to have pain-free sitting, underpants-wearing, and sex (I

too had to take a break from sex for awhile, but am able to " go "

again) and I also have to do aerobic exercise- my workplace has a gym

so I try to go 3 or 4 times a week. So it is a lot of work, but being

without pain is worth it.

> Hello,

> My name is . I'm 25 years old and was recently diagnosed with

> vulvar vestibulitis. I always suspected someting was wrong " down

> there " but had never heard of vvs until I was diagnosed. I have

> always had pain wearing tampons, during pelvic exams, and with sex

> especially. The pain is most severe during the initial insertion of

> anything into my vagina. I haven't had intercourse with my boyfriend

> since April and have been on nortriptyline for 4 months now. I also

> use estrace cream every night and have started PT.

>

> I would like to know how others' experiences with PT have been. So

> far I've done some biofeedback, massage, and pelvic floor exercises.

> Has PT helped anyone out there? How long does it take? Also, I have

> heard mixed things about surgery....does anyone have any information

> they could share? I've been feeling quite discouraged and depressed

> about things and would like to hear any positive experiences other

> women have had. I am so glad to have found a support network because

> I have been feeling like I am the only person who has this problem

> (now I know this isn't true)!

> I would appreciate any kind of feedback or support!

> Thanks.

>

[Guest guest]

Hi ,

I am a vvs sufferer as well. I have never tried any medications, I only use lidocaine for intercourse. I have been hearing alot about estrace cream and not quite sure what the estrace cream and PT are supposed to do, could you briefly explain? I have an appointment with my OBGYN soon and maybe I could get a precsription. I really don't want to take any oral medication, but willing to try estrace.

Is your boyfriend patient and supportive? Mine is understanding but gets very frustrated most of the time. The vvs has made me turned off from any kind of sexual contact, although lately it has improved. He has been deprived for long periods of time, and has developed 'blue balls' (also he doesn't want to pleasure himself). So as you can see, this condition affects so many things; your body, confidence, sexuality and relationships. Robyn

renwa15 wrote: Hello,My name is . I'm 25 years old and was recently diagnosed with vulvar vestibulitis. I always suspected someting was wrong "down there" but had never heard of vvs until I was diagnosed. I have always had pain wearing tampons, during pelvic exams, and with sex especially. The pain is most severe during the initial insertion of anything into my vagina. I haven't had intercourse with my boyfriend since April and have been on nortriptyline for 4 months now. I also use estrace cream every night and have started PT. I would like to know how others' experiences with PT have been. So far I've done some biofeedback, massage, and pelvic floor exercises. Has PT helped anyone out there? How long does it take? Also, I have heard mixed things about surgery....does anyone have any information they could share? I've been feeling quite discouraged and depressed about things and would like to hear any positive experiences other women have had. I am so glad to have found a support network because I have been feeling like I am the only person who has this problem (now I know this isn't true)! I would appreciate any kind of feedback or support!Thanks.

[Guest guest]

Hey -

The internal massage is the best part for me- I'm really surprised to

hear that you've been doing PT and not having it. When I get pain,

burning and swelling, it's after intercourse- the theory behind it,

for me, is that because my pelvic floor and vaginal muscles are

tense, all the " action " of intercourse makes them tighten up even

more and cause a lot of friction, which leads to the swelling,

chafing, etc. So relaxing those muscles is really the key. My PT

will insert a finger into my vagina about an inch or two in- the

muscles of the pelvic floor attach to the vagina about there- if you

insert a finger and do a Kegel, you'll feel the point around where

they attach. THen the PT applies gentle pressure and holds to give

those muscles a stretch. She does it around the bottom and sides

only- you can't do it at the top because you'll squish the urethra and

that's not cool. Suzy here gets this same thing in her rectum too- I

haven't had that but it works for her If you're having an

especially burn-y day, when you/the PT/whomever first puts the finger

in it will hurt a little, but the stretching usually relaxes the

muscles and the pain subsides.

I think the internal massage is really important. Healthy muscles, no

matter where they are in the body, need to be both strong and

flexible. If all you do is Kegels and crunches and other toughening

stuff, the muscles will just get more tense and never really relax. I

definitely think you should talk to your PT about it. Once I got the

hang of how the massage felt, I talked my boyfriend into helping.

I've been in PT for about 2 months, and have been going more or less

once a week (had a few weeks off with holidays and stuff). I have

three more sessions scheduled. I think that will be all I need- I

don't want to be so bold as to say I'll be " cured " (though I hope so!)

but I'll have learned enough of how I'm supposed to feel, and will be

able to continue at home.

Some other things my PT did with me were ultrasound- applying an

ultrasound sensor on my crotch for about 5 minutes- the sonar waves

warmed and relaxed the underlying muscles- it felt really nice,

special patterns of Kegels (hold for a count of ten, relax for ten,

pulse, etc.) and abdominal exercises and stretching. It's been really

informative and helpful.

Hope this helps!

Misty

> Hi Misty,

> Thanks so much for responding to my message! It feels so good to be

able to talk with someone else who is suffering from vvd. I'm glad

that PT has been succesful for you and hope that I find this as well.

Could you tell me more about the internal massage that you've been

getting? I haven't gotten to that point in my therapy yet. Does it

hurt or do you have to " build up " to it? Also, how long and often have

you been going to PT? I hope you don't mind all my questions....I know

I'll probably have more!! Thank you so much again.

>

[Guest guest]

Hi , I opted for the surgery first and then the PT. I was told by my doctor that the trigger points and the vaginisimus where a result of the chronic pain I was in and the "guarding" my muscles trained themselves to do. After the surgery, I whent through PT and have found that I think shes right. The PT has been quite successful now that the sourse of the original pain is gone. Not to say that other women cant have it the opposite way. This is just how it was for me. If you would like to read the details of my surgery and progress and what I have gone through, let me know and I will email you off list. I have posted my story on a couple of occasions and probably shouldnt clog the list serve with repeat posts if not necessary:) Email me anytime:) Bunny Hello...I'm new here! Hello,My name is . I'm 25 years old and was recently diagnosed with vulvar vestibulitis. I always suspected someting was wrong "down there" but had never heard of vvs until I was diagnosed. I have always had pain wearing tampons, during pelvic exams, and with sex especially. The pain is most severe during the initial insertion of anything into my vagina. I haven't had intercourse with my boyfriend since April and have been on nortriptyline for 4 months now. I also use estrace cream every night and have started PT. I would like to know how others' experiences with PT have been. So far I've done some biofeedback, massage, and pelvic floor exercises. Has PT helped anyone out there? How long does it take? Also, I have heard mixed things about surgery....does anyone have any information they could share? I've been feeling quite discouraged and depressed about things and would like to hear any positive experiences other women have had. I am so glad to have found a support network because I have been feeling like I am the only person who has this problem (now I know this isn't true)! I would appreciate any kind of feedback or support!Thanks.*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Hello!

Thanks for writing! The estrace cream I use is supposed to ease some of the

burning - I don't know the mechanisms of how it exactly works and I haven't

seen that much improvement, but I've only been using it for 4 months. Also,

it's hard to tell what works because the pain that I feel only comes when I

use tampons, have a pelvic exam, or sex and I do none of those things

frequently. From reading other messages I guess I'm lucky in the sense that

I don't have pain when not doing those things. Sorry if the info wasn't

helpful.

In response to your other question, I do have a very supportive boyfriend who

has been great through all of this. I too am sometimes turned off by

anything sexual, but I am working on this problem! It can be so difficult

sometimes. I also worry about how it's affecting my boyfriend even though he

has been extremely supportive.

Take care,

[Guest guest]

,

Thanks for the information. Sounds like surgery was a good choice for you.

I'm not considering it right now, but am curious to find out more about it if

I need to consider it in the future. How bad and frequent was your pain

before you had surgery? Also what exactly isa the difference between vvs and

vaginismus?

[Guest guest]

Hi,

Well, I tried estrace, pt, ect when I was 1st diagnosed, too. It

didn't work for me. I had my 2nd surgery 1 month ago. The first

didn't work and this one will work for some of the skin. I will have

to have another surgery in May, probably. Try everything b/f surgery

just b/c it's more conservative. I do believe that surgery is the

answer for me, even though it's taking a while.

Love and Prayers,

Ruth

> Hello,

> My name is . I'm 25 years old and was recently diagnosed with

> vulvar vestibulitis. I always suspected someting was wrong " down

> there " but had never heard of vvs until I was diagnosed. I have

> always had pain wearing tampons, during pelvic exams, and with sex

> especially. The pain is most severe during the initial insertion of

> anything into my vagina. I haven't had intercourse with my

boyfriend

> since April and have been on nortriptyline for 4 months now. I also

> use estrace cream every night and have started PT.

>

> I would like to know how others' experiences with PT have been. So

> far I've done some biofeedback, massage, and pelvic floor

exercises.

> Has PT helped anyone out there? How long does it take? Also, I have

> heard mixed things about surgery....does anyone have any

information

> they could share? I've been feeling quite discouraged and depressed

> about things and would like to hear any positive experiences other

> women have had. I am so glad to have found a support network

because

> I have been feeling like I am the only person who has this problem

> (now I know this isn't true)!

> I would appreciate any kind of feedback or support!

> Thanks.

>