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