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How can I get in touch with women who are suffering with chronic vulvar pain, or vulvodynia?

By September 20, 2008 - 8:32pm
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I want to find support for my vulvar pain condition. I'm feeling alone and worried! I'd love to talk to other women that are experiencing this pain.

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I have vulvodyna too I have had it for 10 years now and I also have IC ( painful bladder syndrome, if you would like to ask me questions about about any of these let me know.

May 15, 2013 - 8:14pm

i have four sites (listed below in order of their membership size) chosen in my "groups" at a yahoo account. I created a yahoo account and password that I only use for this kind of thing, because early on there were lots of spammers and porn site people getting into the site I was using because of some of the key words. This way nothing comes to my primary e-mail address, and I go into yahoo.com when I want to access the vuvlodynia sites. I just ditch the junk mail, and it has slowed down, but I didn't want that in my main mailbox. These sites have been REALLY helpful to me in finding providers and making lists of things to try under my doctor's supervision, but it helps to have a primary provider who trusts your input.

The sites are:

--Happy Pelvis (large membership, active conversations)
This is a group for people with pelvic floor dysfunction, chronic pelvic pain, vulvodynia, vestibulitis, pudendal neuralgia, interstitial cystitis etc who are having pelvic floor physical therapy. The group is open to women and men. Here we will share our journey, stories, get advice, support each other and just plain vent.
We believe pelvic pain is neuromuscular in origin and physical therapy is the only treatment but are open to all modalities of healing.
We believe that 100% healing is possible with physical therapy and have success stories!

-- Vulvar Disorders
he VulvarDisorders List is an on-line support group for women who suffer from vulvar vestibulitis, vulvodynia, lichen sclerosis, vaginitis, and other vulvar disorders. Family members and medical professionals are welcome.

-- vulvodynia · Dr. Howard Glazer's Vulvodynia.com

-- vulvodynia-support · A place for vulvovaginal pain sufferers to share information and mutual support

October 12, 2008 - 8:59am
EmpowHER Guest

Thank you for sharing your personal story with EmpowHer. You have certainly come to the right place for support and assurance that your not alone.

I also wanted to share with you that there is a support group for people suffering from vulvodynia from the National Vulvodynia Association, you can find the link here http://www.nva.org/.

There is also another website I found that has support groups at http://www.vulvodyniasupport.com/.

I hope this helps you connect with others as well as Empowher. You certainly can give great insight into this issue for other woman. Keep us updated.

September 21, 2008 - 4:28am
(reply to Anonymous)

Thanks so much for your help! I want to reach out to other women who are suffering this "private pain". This website is incredible and I'm so happy I found it! :)

September 21, 2008 - 3:24pm
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