10.16.2012

the most personal thing i'll ever write about



For many months, I've been hearing, but ignoring, an inner plea to start writing again. I've been dismissing it because the thing I need to write about is Extremely Personal, even for me. 

But a few days ago, I realized with crisp clarity that my personal is political. And if I can turn what feels like a personal nightmare into something reformative, then at least there will be something to show for the suffering. 


I have severe nerve pain issues in my vagina. Not just 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 nether regions between your legs. And it feels like there's no end in sight.

There. I just came out about one of my formerly cryptic "health issues". It's been a banner year for vaginas, in politics and pop culture, so I thought maybe readers might be better primed to handle my coming out. 

I'm on the more extreme end of the spectrum, in terms of the severity of my vaginal problem, but there are countless, desperate women who suffer to varying degrees in near silence or unimaginably, total silence. As women, 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 or icky-eww-make-it-stop. And looking at that thing? I barely ever had. But hey ma, look at me now! After needing to examine it countless times over the last four months, I now think my vagina is actually pretty cute. And 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. And 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 it hurts, unless you are my awesome nurse practitioner friend who loves vaginas and has held my hand while we look at my poor inflamed one. 

The problem that I suffer from is 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 one of those women. But there's another type called unprovoked vulvodynia where women have pain all the fucking time. Much to my greatest fear, I became one of those women this past June. 

Some estimates say that 15% of women suffer from some type of vulvo-vaginal pain, but only recently is this mysterious pain syndrome starting to be taken seriously. Women have suffered from this pain for eons. But since it's a part of the body we aren't supposed to talk about or even worse, we're supposed to feel shame about, AND because 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. 

So if conventional wisdom is correct, that raising awareness increases research dollars, women have to start coming out about this very secret problem. As my doctor said recently, "we know a lot more about this pain syndrome than we did twenty years ago but there's still so much we don't understand". Which means that the treatment process is long, and involves a whole lot of trial and error. Generally, it's thought of as a condition that can be managed but not cured. I still refuse to accept that. 

Another reason I hesitated to write about this issue, besides the obvious, is because I subscribe to the mind-body approach to healing, and by coming out publicly and focusing even more on the problem, I'm scared that I'm strengthening the bond and identification between myself and the pain. But I'll just try to trust the voice inside that keeps telling me to speak out. And hope that it's a step towards healing. Shame and secrecy never healed nothing. 

(The photo? That's my dog Arlo. He has no shame about displaying his private parts. Good for him.)

14 comments:

  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. Chuck FreemanOctober 17, 2012

    kyle, you are so brave and I am proud of you. I am over my trepidation and joining Team Vagina.
    Love chuck

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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!!

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  10. 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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  11. Kyle here. I can't thank you enough for these warm and supportive notes. They fill my heart up. And remind me how kind people are.

    Love,
    Kyle

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  12. 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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  13. 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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  14. 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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