Local Support for Chronic Vulvar Pain?

Vestibulitis
#1

Hi !!!

Are any of you women who are suffering from VVS or chronic vulvar pain in Oregon? (if not, that’s ok!)

I am a co-founder of a nonprofit support group: National Vulvar Vestibulitis Organization (NVVO) and I suffer from VVS and we have local (Portland Oregon) support group meetings twice a month! Plus we have our website www.nvvo.net and a Yahoo support group. We only have one chapter of NVVO, located here in Portland. (so far!)

If any women out there wanna keep in touch, and/or join our group(s), please let me know and/or visit our sites!

:slight_smile:
Thanks!

Julie
NVVO

#2

Hi,

I also have been diagnosed with Vulvar Vestibulitis and live in the Los Angeles area. I cannot find support groups here or anyone else who has this dreaded syndrome. I have been still suffering going on 3 years. Been through steroid injections, every tried and not true drug, topical steroids, lidocane, biofeedback and physical therapy and even surery to try an interstim device in my lower back area to give off impulses to relax the nerves and muscles. Had it in for six months and finally had it removed as it stopped working after two months. I had my first injections of botox four weeks ago and it somewhat helped and going again this Friday to try again. My next step would be a nerve block. Would love to speak or find some kind of support group in the LA area if you know of one. Thanks.

#3

Ellycio!

Thank you so much for writing!

Wow, what a nightmare you’ve been thru. I hope Friday’s appointment brings some relief. I’ve been suffering for 3 yrs and have had two surgeries (not laser).

I’m sorry to say that we don’t know of any groups in your area - if you’d like join our online support group we would love to have you! You can email us at nvvo@yahoogroups.com or do a Yahoo Groups search for Vulvar Vestibulitis and you’ll find NVVO. The next best thing to a face-to-face group is an online group! We have women from all different backgrounds and age groups and life situations and diagnoses.

But either way, I would love to keep in touch to know how you are doing.

Wishing and sending you strong supportive positive vagina vibes…
Julie

#4

Hi Julie,

Thank you so much for responding. I have felt so alone with this as I do
not know anyone who has experienced what I have. My friends are supportive and
my family but not one of them can really know the pain of this disease or
condition. I will be happy to join the support group. What kind of surgeries
did you have because my doctor (vulvologist) wants to do a vaginal
enhancement surgery replacing the tissue in the vagina but all other Drs are telling me
not to do it. The burning may go but the spasming will not. I don’t know
what to do and I heard it is a long recuperation. I would love to hear about
what you have done.
Looking forward to hearing from you.

Ellyce

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Ellycio!

Thank you so much for writing!

Wow, what a nightmare you’ve been thru. I hope Friday’s appointment brings
some relief. I’ve been suffering for 3 yrs and have had two surgeries (not
laser).

I’m sorry to say that we don’t know of any groups in your area - if you’d
like join our online support group we would love to have you! You can email us
at nvvo@yahoogroups.com or do a Yahoo Groups search for Vulvar Vestibulitis
and you’ll find NVVO. The next best thing to a face-to-face group is an
online group! We have women from all different backgrounds and age groups and
life situations and diagnoses.

But either way, I would love to keep in touch to know how you are doing.

Wishing and sending you strong supportive positive vagina vibes…
Julie

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