Someone like me

04/30/2009 at 7:22 pm | Posted in Uncategorized | 2 Comments
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Today, for the first time, I met someone in person who actually disclosed to me, “I have vulvodynia.”

I won’t provide too many details; suffice it to say I was … touched. This person recognized what I was doing & must have been able to guess why I was doing it. We were talking about other things and then one thing led to another and it just came out. I… the feeling is one of surprise, camaraderie, and a little admiration.

You openly speak the words? Even I dare not speak the words aloud, not for fear of giving them power, but for fear of rejection… online I can be as frank & open as I want, and that’s pretty damn frank. But in person? I revert back to, “I have a girl problem.”
It is taboo to speak of “Vaginas” and “Vulvas” and “Pain in the vulva” in public to another person who is not a doctor. No one wants to hear that. Even if you write the words online, sometimes someone will make a comment behind your back like, “Doesn’t she have anything better/more important to do than talk about vaginas?”
They are important too!

She disclosed to me first. I was the one that said back, “Me, too.” I was the one to say “Me, too – specifically this sub-type of vulvodynia and the pelvic floor dysfunction.” And some of the history and agony & sexual experience. We’re not 100% the same – I’ve been doing this for less time and my pain is mostly well-managed at this moment in time. I didn’t have to go through as much Bullshit with doctors, but I still had quite enough. I may yet have to deal with more.
Still. Not 100%, but close enough. I know of these words of which you speak. I know them well.

My god I actually talked a little bit about sex to a stranger and I wasn’t judged or given the StinkEye.

But no one I know in flesh & blood & clothing ever actually said, “I have this” to me before. I know a lot of people online with pelvic pain, people who blog about it. But in real life, it’s always me, alone, talking to my doctors and explaining for the 100th time what I’ve been through, what I’ve tried, and where I’m at. Maybe it’s me, alone, talking to my boyfriend, telling him about my vulva’s day and what it wants and can handle at that moment in time.

I never… got to listen to another patient. I was never heard like that before.

You mean there really are other ones just like me in this world? They walk among us for real? I mean I knew that other women with vulvodynia & vaginismus must be walking around in public. But we never actually say. I’ve had my suspicions about some girls I went to school with – but we never actually brought it up. The taboo is too strong.

But today she just opened up and said she opens up to other people & I would be surprised how many other women have it.

I… I should say “I wouldn’t be surprised,” becuase in my brain, I know it to be true.
But in person… it’s a little different.

Maybe I should be speaking the words aloud more often.

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2 Comments »

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  1. You’re so right. I know so many women online who share my pain and experiences, and yet, in the “real world” I feel completely alone.

  2. I know exactly what you mean. Someone at my university found me via the Vulvodynia Support group on facebook, and we’ve had coffee a couple times. It’s really… freeing to speak to someone face to face and *know* that they understand.


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