Wednesday, February 18, 2009

Book Release: Vulvodynia Heroes

Alexandra Carmichael of has compiled and analyzed the vulvodynia data CureTogether members contributed to the site and put it together in the book Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments, to be released on February 24.

A little while ago, Alexandra tweeted that she was looking for personal vulvodynia stories to include in the book, and I responded with mine -- condensed into about 600 words, somehow.  In exchange, Alexandra let me preview the book, and I have to say, it's an impressive collection of patients' experiences with vulvodynia, encompassing symptoms and treatments and what patients have to say about both.  I doubt there's another book out there like it for any disease, let alone for vulovdynia, which we all know suffers from a severe lack of attention and research.

Alexandra, thank you so much for working so hard to make our collective voice louder!  And to the other vulvodynia and pelvic-pain bloggers out there, thank all of you so much for sharing your stories and constituting the only community in which I know I'm understood.  You don't even know what you mean to me.  I often feel incredibly alone inside my pain, and I struggle to retain hope that any future day will be different than these past 871 (yes, I counted).  I have plenty of friends who care, but there's only so much they can do, and they've got their own concerns.  I live alone.  I don't have a boyfriend, so no one else is invested in the health of my crotch.  I have no one on whom I can rely on a daily basis.  You, the online vulvodynia community, are the single shining light in this gigantic mess.  You really do keep me going.

And Alexandra, your book and your efforts at CureTogether give me hope that someday we'll all have an answer.


  1. good for you! that's amazing that your story will be in there.

    And I do care about you, and your vagina.

    A lot.

  2. Thank you Lora. I really, really care about you and your vagina (and cervix, and all the rest) too :)

  3. Thanks Esther! I'm excited about the book, and so honored that you and the v-blogger community have come together to be a part of it - spreading awareness and doing research to solve this pain.
    Thank you for everything you do.
    Co-founder, CureTogether