Friday, September 9, 2011

Vulva fantasies

In November or December 2009, I had some kind of virus and couldn't talk for a couple weeks.  And as a waitress, I couldn't work because work requires talking.

So I laid in bed for 10 days straight.  People say they get bed sores from less time spent sick in bed, but that didn't happen to me.  Instead, my vulvodynia almost went away.

Needless to say, it was the fulfillment of a long-held fantasy.  ALMOST.  As life returned to normal, the pain came back.

But I still think back on those 10 days and wonder what went right.  Here are some theories:

  • At least one vulvodoctor thinks guaifenesin is key to easing fibromyalgia and vulvodynia.  Guaifenesin is an expectorant, which I was taking the first few days of the cold.
  • The only thing I was eating was toast.  Literally only.  Specifically Kinnikinnick's gluten-free bread, both with raisins and without.  Buttered with soy-free dairy-free butter.
  • I spent ten minutes or so every day massaging my pelvic muscles and practicing relaxing them.  (Through the vaginal wall.)
  • I spent most of my time lying down.

Since that time, I have fantasized about recreating the experiment to see if I get the same results.  But what made my pain cool down so much?!

At the time, I thought it was the limited diet.  Or maybe, fantastically, the guaifenesin.  I knew the muscle massage would at least contribute something.

But I've tried limiting my diet.  I've done muscle massage regularly for at least one period of time since.  I haven't taken guaifenesin, but I think if it worked we would've heard more about it by now.

And now, having lived with vulvodynia for almost two more years, I think spending all that time lying down is what made me feel so much better.

So.  I want to spend another 10 days lying down to prove it.

In fact, I think we should have a vulvodynia lie-in.  Like a sit-in but lying in our beds to see if our pain levels subside.  Like a virtual sleepover for 10 days.

Oh, I would love to do this.  Sometimes my work schedule gives me 4 or 5 days off in a row.  Maybe next time I will try a mini lie-in!


  1. As a fellow sufferer and lover of my bed I salute you, and I'm in. Enjoying the blog :)

  2. I agree that lying down definitely helps. When my pain was at its worst, it would be gone in the morning.

    I now do my homework in a reclining positing, but I find I still have to shift from my back to each hip. Lying on my back for too long causes my pain to flare.

  3. Quinn, sometimes I have that problem too -- something about my tailbone. Sometimes I fantasize about a magnificent new support system for the body that is neither chair nor bed...hammock? Ha!

    Or floating in space. Or water.

    Dandeliondee, glad to have company! :)

  4. I'm so glad you had some pain-free days!

    Hope I'm not being obnoxious, but I'd like to point out that Kinnikinnick white gluten-free bread is very low in oxalates as is butter and raisins (not sure about the brown bread-I'd have to have an ingredient list). My greatest healing from vulvar pain came when I was on both a low oxalate diet and taking gauifenisin. My vulvar pain symptoms improved about 80% while my fibromyalgia symptoms are 100% healed. Perhaps rethinking your diet is part of the answer for you? If nothing else you could re-try the experiment of eating nothing but the bread for a week or two and see if that helps again. If it does, you'll know that something in your diet needs to change and you can work to figure it out. I know a woman who was helped by eating an allergy elimination diet for three weeks (chicken, white long grain rice and broccoli and water only -- no other foods, beverages or supplements.) She then slowly added back one food at a time every 4-7 days and checked her reaction. Gluten, salycitates, oxalates, and acidic foods were all problematic for her.
    Perhaps something like this could help you learn what diet your body needs to support it's health?