Thursday, September 25, 2008

The Topic is Vulvodynia

I've been suffering with vulvodynia -- aka chronic, unexplained crotch pain -- for almost two years. In fact, our anniversary is October 2. The couple months leading up to October 2, 2006, I noticed that things were feeling kind of odd down there. I had some very low-level pain that suggested to me that I needed to drink more water. You know, "maybe I'm getting a bladder infection (UTI)."

On October 2, 2006, the pain descended on me in full all at once, and I thought I had finally gotten that UTI. Only the pain wasn't like past UTIs -- it didn't have me rushing to the bathroom; it just hung around all the time, hurt worse when I moved, when I peed. I chugged water, got antibiotics, but the pain stayed. I went to the urgent care clinic fearing for my kidneys, and the doctor told me I probably had Chlamydia. Looking back, I think, if only...

Repeat ad nauseum. Finally, June 2007, after innumerable doctors, irrelevant diagnoses (UTI, yeast, bacteria, neurosis, just-need-an-oatmeal-bath), and too much time in the stirrups, I visited my mom's gynie who told me right away that provided all cultures came back negative, I had vulvodynia.

I had read about vulvodynia. I was devastated.

Vulvodynia, doctors theorize, has many possible causes, most of which remain unproven. Vulvodynia has no sure-fire treatment, and it's chronic. Sometimes it goes away by itself, but many women march on for years under it. I was 26 when my vulvodynia started; some women are even younger. Some have never had pain-free sex. Vulvodynia was next to cancer on the list of things I didn't want to hear.

You can't understand chronic pain until you've had it. I've tried endlessly to relate my experience to those around me, seeking sustenance in empathy that only a few special people have been able to provide. I hope that by writing my experiences here, I will add another voice to the issue and provide some community for others who suffer alone.


  1. Esther,

    Welcome to the community! Thank you so much for sharing your story.

    Keeping a blog has been great therapy for me and I've made some wonderful connections.

    BTW- Great blog name!


  2. Hang in there, chica. I have complete faith that you will NOT live with this forever - I feel it in my gut. I know it.

    And I have to agree - your blog name is fabulous. :)


  3. Thanks so much for the note and the link in your sidebar! I'll add you to mine as well--it's always good to know that someone understands!


  4. "the doctor told me I probably had Chlamydia. Looking back, I think, if only..."

    Those words popped out at me from your blog. That's EXACTLY how I feel.

  5. Aww, hugs Natalie!! Maybe someday our stuff will be just as easy to solve.

    Thanks for posting -- I'll add your blog to the sidebar. Can't wait to read it!

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  7. I'm 26 as well and recently diagnosed. Is this some type of magic age to get rare illnesses?