Monday, July 14, 2008

Voices from The Body Chronic: An Update from Alexandra

Back in May we heard from Alexandra on her journey with vulvodynia. Alexandra is the author of, a serial bio-IT entrepreneur, and Taoist Tai Chi instructor. She lives with her husband, two daughters, and vulvodynia, in the San Francisco Bay Area. Recently she helped launch CureTogether a site where patients and researchers can work together on issues of chronic health.

I feel like I've been cured.

I guest blogged recently about my 10-year journey with vulvodynia. Only 2 months later, I am enjoying a 95% pain-free life, including, yes, SEX! For the first time ever, penetration actually feels good, something I thought I would never get to experience and something I could not even imagine before. I found my G-spot recently and have been feeling such intense pleasure overload that we have to take it easy some nights. :) The remaining 5% of my pain comes from a bit of scar tissue from the silver nitrate burning I mentioned in my last post - I may be able to have it surgically removed if it bothers me enough.

So how did this incredible change come about? It was really a combination of things, but mostly it's the story of a wonderfully gifted naturopath who helped me finally figure out what was wrong with my body, and a graduate student in Australia.

After realizing my estrogen levels were sub-menopausal, my naturopath started on an estrogen cream therapy, 1g of estradiol per day, compounded specifically for me and applied vaginally. The first time I put it on, I almost passed out from the pain, but I committed to doing it for a whole week before giving up. By the end of the week, the pain had subsided enough that I thought I could try for another week. And by the end of the month, the raw, blood-red vulvar tissue had become soft, pink, and receptive. I couldn't believe it. I also started feeling much more interested in sex, which was a nice surprise for my husband!

At the same time, however, I went through a grieving process that I had suffered so much for so long, and it could have all been solved for me by a simple cream, if I had only known about it before. Here's where the Australian graduate student comes in. While browsing the website of the National Vulvodynia Association, I came across a study called Revive, which provided the emotional healing and relationship rebuilding that my husband and I both needed. Revive is a web-based treatment program designed specifically to assist women with sexual dysfunction, and it involves written/communication and physical/sensory exercises for both partners. Lisa Jones is the visionary behind this program, and I am so grateful for her work developing it as well as for her support and encouragement throughout. I highly recommend it for anyone struggling with painful sex.

Then, with both physical and emotional healing happening, my husband and I decided to build a website to help others like me find answers faster and reduce their suffering, perhaps by many years! It's called CureTogether, and it brings patients and researchers together to find cures for chronic conditions. People can post and review resources that have worked for them, and eventually we will be able to make discoveries and connect people with similar health profiles so that they can learn from each other and feel better sooner.

I'm a living example that it is possible to heal and live almost pain-free! Thanks so much to Body Chronic for providing a forum for us to share our stories - it's so important for us to learn from each other, and i
f we all work together, we can help ease pain and suffering for the millions of us out there with vulvodynia.

Wishing you strength and perseverance on your own road to healing.

If you are interested in telling your story or developing an interconnection between chronic pain and chronic illness and outside forces or influences, please e-mail me at


Mind Body Shop said...

Smile, it's free therapy.

Jeanne said...

I recently became aquainted with Alexandra Carmichael.

It started with emails back and forth. Then we had a fantastic long phone call (well over an hour).

Since then, I have posted lots of info on and I have been doing all that I can to enthusiastically support the research that CureTogether is doing on vulvodynia, endometriosis, and migraines.

Alexandra has posted comments on my endomentriosis/chronic illness blog as well. I am thrilled to have gotten to know Alexandra.

Her passion, spirit, and desire to help people come shining through!

Thank you for sharing your story, Alexandra.

I have endometriosis, interstitial cystitis, IBS, fibromyagia, vulvodynia/vestibulitis (depends which pelvic pain specialist you ask), pelvic congestion syndrome and numerous other chronic illnesses. I'm glad I found this site! :)