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.
You’d think that once you’ve come out as having herpes on the CBC, as well as publishing a blog about having herpes that the work would be done. But, in reality, I think about having herpes all the time and worry that people will judge me, find me unattractive, think I’m diseased and therefore disgusting all the time, no matter how often I say it out loud.
Tonight I was at a gathering, and it was really fun and someone asked me what my ‘claim to fame’ was. I said it was telling the world, through the CBC that I have herpes. He was a lovely young man and his response was ” wow, you have herpes”. Since he’s an aware and wonderful person, he meant it like ‘great, so many people do but I never meet anyone who actually says it’ kind of way. But I clenched and felt judged. Which is my stuff, not his and I wonder if I’ll ever get over it. And then I wonder how people who keep herpes a secret manage to tell others or come out about having herpes when it feels like such a challenge to me, even after telling the whole world about it.
If you don’t have herpes, it’s likely you haven’t spent a whole lot of time thinking about where people get them. Yes there’s the mouth or the genitals, but there’s a whole lot more to consider than up or down. Some of the various sensitive bits are more sensitive than others, so when you get painful sores on the more sensitive bits, it’s much more uncomfortable than it might be otherwise. As someone with genital herpes, I get sores all over the place, from my butt cheeks to my labia to my mons. The first day with herpes usually means I won’t sleep very well and will feel generally cranky and under the weather. But if those sores are near my clit or my ass, one day of discomfort can stretch into three with the first two being so painful that I take tylenol and can’t ride my bike. I find this moving about business to be pretty strange and frustrating. Do others have the same experience? I was lead to believe when I contracted herpes that I would get sores in the same place, the place of first contact over and over, and I’ve read almost nothing that talks about this phenomenon. So, is it just me? Or do you also have a wide range of eruption sites? I love the term eruption sites, I think that was what the very first pamphlet I ever read called them..
I have genital and oral herpes—and I swear it saved my life. It sounds weird, I know, but it’s true.
I contracted herpes as an undergrad at Berkeley in the mid 80s. My boyfriend had a cold sore on his lips after the first sunny day of skiing. Since childhood he would get the same little blister after the first day on the slopes, so he didn’t think much of it. Both of us ignorant of the potential transmissions to genital areas, he went gloriously down on me.
If I hadn’t contracted herpes in college, I think I would have engaged in a lot of stupid, unsafe sex. I’d likely have contracted far more serious sexual transmitted conditions. Let’s be serious, I’d be… Dead.A week or so later my entire vulva erupted in horribly painful oozing sores. The nurse practitioner at the university health clinic coldly declared the diagnosis and bluntly dismissed me with a prescription slip. She was neither helpful nor comforting for this scared kid. Judgment hardened her face.
This initial outbreak lasted for a couple of painful weeks. For the next few years I suffered frequent and debilitating outbreaks. Why did I suffer so when others with the same disease got away with hardly an itch?
As I struggled with feeling contaminated and crippled during that first year, I was accepted into an excellent seminar on the mind-body connection in the Psychology department. As a coping mechanism of the grieving nerd, I decided to make herpes recurrences and triggers my research topic. Since this was before the Interweb, much less Google or medical information sites, it wasn’t uncommon for the average citizen to be totally in the dark about their medical conditions. Armed with treasured access to the university library, I combed through card catalog (how archaic!) databases on disparate current research. This research process, supported by a non-judgmental and brilliant professor, helped me to better understand the disease, manage outbreaks and, most importantly, normalized the situation for me.
But that’s not how herpes saved my life.
In college I claimed my sexual rights as an adult and became very sexually active and very experimental. I continued in my sexual growth as I moved from Berkeley to San Francisco. This was during the death-filled days of the AIDS pandemic. Having herpes was just so common that it just wasn’t a big deal under the shadow of HIV’s certain death sentence at the time.
My Herpes—yes, I saw the disease now as mine; the very bugs that would now live in my basal ganglion and share my body with me, as common as the bacteria in my stomach and mitochondria in each of my cells, were part of me now. My Herpes became the little annoyance that gave me the best reason/alibi/excuse ever to whip out a condom or dam or gloves with that new hottie I hooked up with. I’d smile and tell them I have herpes and talk about it as a common nuisance. I’d then tell them I was hot for them and don’t want to harm them so I’d like to use a condom. I figured that if anyone had an issue with hot latex sex with me because of My Herpes, they didn’t like me, the whole person. I wouldn’t want to hang out with such a shallow sob.
It never caused a problem and no one ran away. With each occasion I felt stronger, smarter and sexier.
If I hadn’t contracted herpes in college, I think I would have engaged in a lot of stupid, unsafe sex. I’d likely have contracted far more serious sexual transmitted conditions.
Let’s be serious, I’d be…
Herpes is most contagious right before an outbreak and continues to be transmittable through the outbreak. You may or may not know when you’re in a pre-outbreak stage. Some people feel a tingling sensation, others don’t.
If you want to know more about the real facts on herpes, the CDC’s website has some great info. One stat reads that 1 out of 5 sexually active adolescents and adults have herpes. That one may be you without even knowing it.
While not everyone with herpes experience recurrences, people with recurrent herpes usually have particular triggers or sets of triggers. These will vary from person to person. Obviously the college boyfriend was triggered by first exposure to bright sun light. Others are triggered by nuts, chocolate, stress, etc. You have to observe your own patterns.
My triggers turned out to be a combination of sleep deprivation, negative emotional stress, and a lowered immune system. So when I have an outbreak, I take that as my body’s alert system to get some sleep, consider the blessings in my life, pop some vitamin C and take care of myself. My Herpes behaves as my personal stress watch-bug.Herpes is a pain and a hassle—but in the dating world I turned it into an advantage to stay healthy, ethical and joyously sexual.
Yes, My Herpes saved my life.
Printed with permission.