For months, I’ve been ignoring an urge to start writing again because the thing I want to write about is extremely personal, even for me.
It’s time to stop being cryptic about one of my “health issues” that I’ve referred to on this blog. I have severe nerve pain in my vulva. Not once in a while. All the time. Every day for the past four months. Sitting is miserable, often impossible. Standing is only a little less miserable. It’s like having sandpaper tucked into the folds between your legs. And at this point, it feels interminable.
There are countless women who suffer in near silence or unimaginably, total silence, with vulvovaginal pain. We are taught that it’s shameful and improper to talk about our vaginas. Until four months ago, I too could barely say the word ‘vagina’ without feeling embarrassed.And looking at that thing? I barely ever had. After examining it countless times over the last four months, I now think my vagina is cute. I’ve grown as comfortable saying the word ‘vagina’ as say, ‘dog’ or ‘groceries’.
If you suffer from chronic migraines or back pain or wrist pain, or most any other bodily pain, you can tell people about it, if you choose to. You can even show them where it hurts. Talking and showing might not make the pain go away but it can make you feel less alone. Chronic pain is a lonely motherfucker.
Chances are good that friends and loved ones aren’t going to be comfortable looking at my struggling vagina, to see where or how it hurts, unless you are my nurse practitioner best friend who loves vaginas and has held my hand while we look at my poor one.
I suffer from a disorder called vulvodynia. For many women, the pain is only ignited if there’s contact with the vagina – this is called provoked vulvodynia. For most of my life, I was in that camp. But there’s another type called unprovoked vulvodynia where women have pain all the time. Much to my greatest fear, I became one of those women this past June.
Estimates suggest that 15% of women suffer from some type of vulvovaginal pain, but only recently have providers and researchers started to take this mysterious pain syndrome seriously. Because it’s a part of the body we aren’t supposed to talk about, or worse we’re taught to feel ashamed about, combined with the fact that sexism is alive and well, the medical establishment has only recently begun to spend money, and not enough of it, researching this debilitating female pain disorder.
If conventional wisdom is correct that raising awareness increases research dollars, women need to start coming out about this secret issue. My doctor said recently, “We know more about this pain syndrome than we did twenty years ago but there’s still so much we don’t understand”. Generally, vulvodynia is considered a condition that can be managed but not cured, and the attempt to manage involves a lot of trial and error, with some women never finding relief.
Another reason I hesitated to write about this, besides the obvious, is because I subscribe to the mind-body approach to healing, and by coming out publicly and focusing a wider lens on the problem, I’m scared to strengthen the identification between myself and the pain. Still, I’m trying to trust the voice inside that keeps telling me to speak out.
(The photo? That’s my dog Arlo. He has no shame about displaying his private parts. Good for him.)