Making Connections at the Vulva Pain Support Group

Making Connections at the Vulva Pain Support Group.

Making Connections at the Vulva Pain Support Group

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?

Blog Hop!

It’s been a long time! Thanks to Andrea Zanin for encouraging me back to the herpes blog by asking me to take part in the Blog Hop. The Hop is basically a blog chain letter where writers answer some questions about their upcoming book (or not, as is the case for me), and then include a few other bloggers to take part by including them in the post (see below). Andrea is one of my favorite sex, relationship, and kink bloggers as well as being a lovely human and excellent facilitator!
What is the work­ing title of your next book?
I’m not writing a book, just trying to come up with new blogs more than I have been recently. Sometimes I’m full of the herpes blogging energy, and sometimes I’m not. I’m using the blog hop as an excuse to remind myself that I love talking and writing about sex.
Where did the idea come from for the book?
The herpes blog came out of my own personal experience of contracting herpes when I was 18. I was clueless about sex and STI’s at the time and was devastated by the diagnosis. Herpes had a giant impact on my life and it took years to (almost) eradicate the shame I felt from living with the virus.
What genre does your book fall under?
‘Sexual Health Information’? That sounds so dry, maybe ‘Sex Positivity Through Shameless Fucking and Dealing with the (Good and Bad) Consequences’ would be a better, yet slightly more awkward description.
Which actors would you choose to play your char­ac­ters in a movie ren­di­tion?
Tilda Swinton and Jennifer Tilley. They would wear a lot of transparent clothing and talk in those fucking sexy voices. They would also have a lot of lovers.
What is the one-sentence syn­op­sis of your book?
Girl gets herpes and it makes her a better person. Ugh, sorry.
Will your book be self-published or rep­re­sented by an agency?
WordPress is about as self-published as one can get.
How long did it take you to write the first draft of your man­u­script?
The first blog had been rolling around in my head for years so when I finally sat down to write it, things came pretty quickly. Editing, not so much…
What other books would you com­pare this to within your genre?
Hmm, I’m not sure. There are books out there about herpes but they’re mostly pretty clinical and I’ve never found a blog like mine. Most of the herpes information on line are either ‘how to meet other singles with herpes’, or medical/health blogs.
Who or what inspired you to write this book?
Like I said earlier, this was very much a project based on  personal experience and coming to terms with my life after getting herpes.
What else about your book might pique the reader’s inter­est?
What could be more interesting than first person accounts of people living (quite well for the most part) with herpes?! Also, Midori has contributed, so there’s a little star power to pique the interest.
Here are the writ­ers whose work you can check out next:
Adorkable Undies is the witty and sweet brainchild of Nadine Thornhill. Nadine is an Ottawa girl with a sordid past that involved working for Venus Envy and Planned Parenthood as well as a penchant for taking her clothes off on stage. Adorkable Undies cleverly and skillfully tackles a wide range of sex, feminist and relationship issues plus there’s Fashion Fridays, something that always makes me smile.
Ignacio Rivera is a Queer, gender-shifting, Trans-Entity, Black Boricua, lecturer, activist, filmmaker and performance artist. Ignacio has shared their poetry, spoken word and storytelling for over 10 years. Ignacio’s blog, Poly Patao Productions is a smart and thoughtful collection of personal musings on sex, kink, class, race, gender, and culture as well as sex toy reviews, a Q&A column and events.
Filthy E-Mails is a blog dedicated to publishing sexy, sweet and just filthy messages sent across the web for all to see. A forum for people to anonymously post erotic messages they have sent online (today’s love letter… but more smutty).
Any blog called A Finger in the Pie is going to get my attention. This super cute food blog has restaurant reviews, photos, and recipes for late night (and late morning) creations, as well as some useful and entertaining cooking and food tidbits. And the ice cream on this pie? A kick-ass sound track suggestion for every recipe!

Outing Myself

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.


Location, Location, Location

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..

How Herpes Saved My Life – by Midori

How Herpes Saved My Life – by Midori.

How Herpes Saved My Life – by Midori

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.


Get every new post delivered to your Inbox.