Making Connections at the Vulva Pain Support Group

Monday, October 20, 2014

Last month was the first Vulva Pain Support Group at Venus Envy. I’ve spoken to hundreds of people over the years at VE about vulvovaginal pain, most are at their wits end by the time they come to us looking for books, lube, dilators, an ear, resources and so on. Gynecologists are the experts when it comes to vaginas, but most people I’ve spoken to haven’t found much relief there. Physiotherapists who specialize in pelvic floor work tend to have far better results, and, of course, there are many other paths to healing. But this is a blog about herpes, and I’m getting to the connection here, I promise.

Clearly there is a lot of pain associated with a herpes outbreak, and there can be ongoing difficulties as well, side effects such as loss of elasticity where there have been many sores over many years. That, and the psychological impacts of having something just ‘wrong’ with your parts that are supposed to be about pleasure. Herpes and and other chronic genital pain can make a person feel undesirable and avoid sex/intimacy/relationships, along with just plain hurting so much that you don’t know what to do to make it stop. Luckily, once aherpes outbreak has run its course, the pain stops, but for people with other types of vulvovaginal pain, that’s not generally the case. Pain with these other conditions, such as vulvar vestibulitis syndrome (VVS) and dysesthetic vulvodynia, to name just a couple, can last for years, sometimes a lifetime.
One ongoing connection that I hear with any kind of genital pain is shame. Shame about having something wrong with your parts (vulva, penis, vagina, anus, and the many other words used to describe these parts). Got herpes? Shame on you for being a slut. Vulvodynia? Clearly you’re a prude and this is your excuse to avoid sex. Hemorrhoids? Well we don’t talk about ass things at all, so that’s just gross. We have all kinds of ways to shame people, and people who have genital pain have to not only deal with the pain itself, but the shame and negativity that goes along with their condition.
The second thing I hear about when discussing these challenges is fear. The fear of never being loved, of being alone forever, of caring for someone and confiding in them and being rejected. The fear of being vulnerable in our most vulnerable places.
When I was diagnosed with herpes, I was 18 years old and I assumed I would never have sex again. I was so grateful that someone wanted to still touch me, even knowing my terrible secret, that I agreed to marry a person who was a very good person, but a very bad match for me. Luckily, I found some peace in the idea of being alone before actually going through with it and causing us both another boat load of misery.
Since then, I’ve had excellent relationships and pretty awful ones (like most people), but I truly believe that my sense of self was so damaged by this deep belief in my undesirability that I stayed with people long past the due date of our relationships, always believing that this person was the last one who would want to be with me. And this is where I see and hear connections with others who have things ‘wrong’ with their bits. We’re so attached to the idea that we have to have perfect genitals (shaved, perfectly formed, pain-free, not contagious, etc), that we feel like nobody will love or desire us without that perfection.
This says a lot to me about what we consider to be sex. Yes, many of us can say that sex is more than a penis in a vagina, but for most of the world, that is the only definition of sex. I’d love to change that definition, and in my little sex poz bubble, that’s not what we truly believe, but that is a tiny bubble indeed. In my perfect world, sex would be a million things. It would be spanking and jerking off and bubble baths and dirty talk and nipple orgasms and anything you can possibly think of that makes you feel good. Ice cream sundaes as sex? Don’t mind if I do.
But seriously, the pressure is there on anyone who doesn’t want to have the kind of sex that their partner wants to have, especially when that sex is what we think of as “normal” sex, the old penetration until orgasm format. Which makes the person with the pain feel guilty, and guilt does nothing for sex drive. And the partner of someone with pain? They feel guilty too, for wanting something that could hurt their love. So much guilt, so much pressure. I can see why people totally lose all interest in sex when it hurts.
Shame and fear are two powerful driving forces in our lives. They gang up on us, bully us into believing that we’re not good enough, and that belief is incredibly damaging. One of the most powerful tools we have to combat shame and fear is talking about it. Bringing what we fear into the open, sharing with other people, owning our bodies, these are some of the ways that we can combat a world that tells us we’re damaged and that nobody wants us. I’m super excited about this vulva pain support group as a way for folks to share their experiences and tell shame and fear to fuck off in the process.
Want to know more about the Vulva Pain Support Group?

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