Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

What is VVSN? September 11, 2007

And what the heck does it have to do with vaginas?

The Vulvar Vestibulitis Support Network (formerly NVVO)  is committed to the education, healing, and support for women suffering with Vulvar Vestibulitis Syndrome (VVS) and other similar chronic vulvovaginal pain disorders.

We’re organizing and distributing information and doing presentations to increase awareness about Vulvar Vestibulitis Syndrome locally and its symptoms, treatments, and the stories of us women who survive and thrive through this disorder. We are also advocates of the face to face support group! It has changed the quality of all of our lives immeasurably! We’d like to help you set one up in your area if you’re interested.

Our mission is to bring support and relief to women who suffer with chronic vaginal pain.

We are located in Portland Oregon.

We are looking for new members for our awesome wonderful support group! If you are in a location near us we would love to meet up with you! Our meetings are usually on Sundays in SE Portland.  We are, however, flexible, and would love to meet other women in the area with this condition. Our Yahoo online support group is http://health.groups.yahoo.com/group/vvsn/ and although we are not as active of a group as others, we welcome new members!!

Please contact us at if you have any questions.

vsssupport@gmail.com

Thanks for visiting!!

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13 Responses to “What is VVSN?”

  1. katie s Says:

    I LOVE THE NVVO!!!!!!!
    It makes me feel all sparkly and loved.
    -Katie S.

  2. julieannpdx Says:

    Awesome!!!!!!!!!! I love NVVO TOO!
    I wanna be able to add to this though…..
    heehee

    Julie

  3. marit Says:

    Hey guys what happened to the .net link?

  4. brokenvee Says:

    damn, too bad i live in philadelphia 😦

    • Tawana Says:

      Hello all my name is Tawana and i live in Philadelphia. I am 23 and i have vulvodynia and have been suffering for 3 long years now. I really would love 2 start a group in philadelphia so if you come across anyone please give them my email. As of yet nothing has worked and i am seriously considering surgery so any type of support and info is greatly appreciated.

  5. katie s Says:

    Hi Marit,
    Oh, Our .net thing was expensive and since we are poor people we could not keep it up. Plus it was hard to update.
    Plus this way you can leave us comments! Which is exciting!
    Hi BrokenVee,
    If there isn’t a group already in Philadelphia, you can start one! There are big groups of ladies with this problem on facebook, myspace, and other yahoo groups. Maybe leave a post asking if there is anyone in your city who wants to meet up. That’s what we did!
    I hope you all feel better soon.
    Luv,
    Katie S

  6. JoLyn Vesser Says:

    I live in Blackfoot, Idaho. This kind of thing is just not talked about around here. I do feel alone with vvs. I was suprised when my Dr. actually put a name to my problem.
    I tried the prescribed cream but it only made it burn more and my Dr. told me to stop using it.
    My Husband is getting frustrated with me not wanting sex, cause it hurts me too much. He is actually getting selfish about it. He thinks if he cuddles with me then I will just let him get some. It’s just not worth it to me anymore. It doesn’t help that he is a sex-aholic.
    Anyway, tell me what I can do to get support?
    Thanks,
    JoLyn

  7. Alexa Says:

    I have a broken vagina. I am a college student in Portland. Let’s be friends. No one else seems to understand THE ABSOLUTE AND UTTER FRUSTRATION OF NOT BEING ABLE TO JUST HAVE SOME DAMN SEX. You all seem upbeat. I think I’d like to know you.

  8. julieannpdx Says:

    PS – ladies – I recommend joining groups online for lots of helpful information from the women who participate. There are several excellent ones on yahoo. Join and tell your story and ask questions (doctors to recommend in your area? for example) and you WILL get advice and support!

    Julie

  9. miriam Says:

    Hi all!

    I’m wishing that I lived in Portland! Thanks for putting together this site. Like many others here, I’ve found the emotional part of this disorder the worst part. I wonder if I’ll ever find a partner. I normally have a high libido, but any kind of penetration kills me now. Am thinking of having the surgery with Dr. Goldstein in DC. I also have pain with any kind of provocation- pants, riding a bike, sitting…
    I don’t know what to do. I’m scared that the surgery might make things worse… Feeling rather lost here. I’m envious of those of you with supportive partners. I wonder if I could find someone who’d be okay with non penetrative activity.

    I highly recommend the book- “Let me count the ways”.

    That may just be the subtitle- i can’t remember, but it discusses other ways to be intimate and disputes the idea that penetrative sex is the end all be all in a healthy relationship.

    Now if that idea could just get out to the general public.

    I feel like I have a lot to offer in a relationship and makes me sad to think that the dealbreaker is a defective body part.

    This condition has to come out of the closet. I believe there’d be more empathy if there was more publicity.

    Well, thanks for listening to my rant lol…

    I guess I just have to get these frustrations out!

    Miriam

  10. Autumn Says:

    So glad to find out I’m not alone in this. I used to love sex before my vagina became “broken.” To make things even worse, I now have chronic yeast and bacterial infections to go along with my broken vagina for some reason. I am dying here!

  11. Heather K Young Says:

    I have been diagnosed with vestibulitis and been treated with steroid cream and then testosterone cream. Nothing seems to work. Now they want to do surgery to remove the tissue, which I do not want to do? I am looking for a second opinion. Do you know how I can find another Doctor in San Diego, CA that specializes in this. Have you heard very much about this surgery or is there other things I can try first?
    Thanks, Heather


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