Coming Out About Vulvodynia

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.

So I repeatedly reminded myself that in this case, the personal is political. If I can turn this struggle into something of use to other women despairing alone and in silence, then the suffering won’t be for naught.

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.)

14 thoughts on “Coming Out About Vulvodynia

  1. Kyle, you freaking rock. Agreed – the personal is totally political, and I love you for living it out loud. Thanks. That's all not to say that I'm not sorry you're struggling; I'm so sorry that you are having such a hard time right now…but given the ways we all struggle with shit (and you have *way* than your fair share), I appreciate you putting it out there.

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  2. Kyle: you are one brave and rocking lady. Good for you for SAYING IT OUT LOUD. I'm sorry you're in such pain but YES — it's so healthy to speak it out loud! We've been trained — and I believe culture reinforces — women's unconscious shame about their bodies — whether it's their vaggies, or they've had miscarriages, abortions…you name it. But owning your bod is to write it. I hope this helps on your healing journey. It sure as hell will help other women living with this issue, just by writing about it. Yay Kyle!!!

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  3. Kyle, I'm really sad to hear that you have to suffer with this malady. I wish that I knew how you could overcome this pain but I have no idea. I just want you to know that you are a brave soul to let the world know. There are surely others out there who want to know that they are not alone in their suffering. I commend you as a human being. I'm also here for you if you need a friend.

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  4. I agree that you totally rock. Chronic pain is horrible, chronic pain in a place that culture reinforces as taboo for conversation is even worse. I'm so sorry you're going through the issues you're having with your yoni (from the Sanskrit meaning “origin, source, womb, female genitals,” if I might validate your vagina's nickname, not that it needs validation). Good for you for talking about it, and I hope you find a way to alleviate the pain soon! Someone on your FB page mentioned ashgawanda (an herb), and I took a workshop with a naturopath who was talking about the adaptogenic properties of that particular and several other herbs as being useful in treating female endocrine issues. I'd be happy to pass on that doctor's info (she's in Brattleboro, VT) if you have interest in investigating that further. Sending healing vibes and deep appreciation of your awesomeness!!!

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  5. President Freeman, I agree with how much you rock. Chronic pain is horrible; feeling as though one must suffer in silence from chronic pain that happens to be in a place that our culture finds taboo in conversation is even worse. So glad you bravely spoke up and posted this! I'm so sorry you're having issues with your yoni (from the Sanskrit for “origin, source, womb, female genitals,” if I may validate your vagina's nickname, not that it needs validation) and I hope you find a way to alleviate the pain soon. Someone on your FB page mentioned trying ashwaganda, and I just took a workshop about adaptogenic herbs such as ashwaganda and their effect on female endocrine issues with a really knowledgeable naturopathic doc who is based in Brattleboro, VT. I'd be happy to pass along her information if you are interested in pursuing adaptogenic herbs as a possibility for relief. Hope you find something that helps soon! Beaming healing wishes and profound appreciation of your courage and awesomeness across the ether!

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  6. You are an amazing woman Kyle. I love that you can speak out and share your experience with everyone. Hopefully this falls on the ears of those who suffer as well…and are feeling alone. I, too, am sending you healing vibes!!!

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  7. I am a chiropractor, and I have referred many women to acupuncturists for vaginal problems (too little sensation and pain). The success rate has been very high.

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  8. I am a friend of your awesome sister- Elizabeth, and just want to give kudos, and that I'll be sending positive energy into the ether regarding healing of your yoni (my fave term as well, and really the Indian word for vagina- so it's not really code…)

    Whatever mental or physical energy is blocled and causing pain in yout yoni, I know that with your strength and courage you will unlock the pain and release whatever is blocked and hurting.

    Love!!

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  9. I am a friend of your awesome sister- Elizabeth, and just want to give kudos, and that I'll be sending positive energy into the ether regarding healing of your yoni (my fave term as well, and really the Indian word for vagina- so it's not really code…)

    Whatever mental or physical energy is blocled and causing pain in yout yoni, I know that with your strength and courage you will unlock the pain and release whatever is blocked and hurting.

    Love!!

    Like

  10. A friend once said to me “I love your style of activism”. I didn't know what she meant, I'm hardly an activist! When I asked she said “Yes you are, you talk to people about your vulva pain all the time!” I guess she had a point.

    I hope you find answers for your pain, it's an awful thing to live with.

    Alison

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  11. Just catching up on my reading and came across this post. It is hard to talk about vaginas………but we love them and want them to feel good. I hope you can figure out what's going on and get it fixed quickly. A man would have his penis fixed immediately if it hurt, and probably by a male doctor.
    mo

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  12. Kyle, I love you & am so impressed with, proud of ~ in that “say it loud, sister! ~ kind of way. Blessings, courage and strength continue to both you and your dynamo of a mama! [oh, and I love the nickname “yoni, too!”]

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