Last month a fellow sex blogger made a very brave post (which was removed after only a few hours at the request of her boyfriend, unfortunately) about her discovery that she had contracted genital warts. Understandably, her emotions ran the gamut: hurt, anger, embarrassment, fear, guilt. And most of all, shame. That was the part that really got me. So I reached out to her to share my story so she wouldn’t feel so alone. I sent her a very long email detailing my experiences.
What follows is that email edited into a blog post. I’ve cleaned up the narrative a bit, and taken out a few things that were directed at her personally, but the general content remains the same. I’ve also tried to include links to facts and resources if you would like to look further for more information. My goal here is try to take some of the fear and shame out of these things, to try to de-stigmatize it as much as one person can.
Of everything I have shared up until this point and everything that will be shared after today, nothing as ever filled me with as much trepidation as sharing this.
It goes without saying that I am not proud of anything I’m about to tell you. I thought it would be helpful to share some things so that you don’t feel so alone. And so that hopefully you’ll feel less ashamed.
I am about to be 37 years old next month. I’ve been having sex regularly since I was 17, so going on 20 years now. For at least the first half of that, I was stupid and reckless, rarely using any protection. Consistently. I was on the pill for most of the time, so pregnancy was not a huge concern. I guess the apparent invincibility of being young and stupid made disease not much of a concern either. I’ve been EXTREMELY lucky things have never been worse than what they are.
I got my first (yes, unfortunately… or idiotically, really… I’ve had more than one) STI, chlamydia, a couple of months before I turned 18 from my 4th partner and subsequently gave it to my 3rd. 4 was just some fuckbuddy guy from my neighborhood, but 3 was the (then) love of my life. 3 and I didn’t have a romantic relationship nor were we anything remotely close to exclusive. We were best friends and fuckbuddies. It started as a yeast infection, as chlamydia is wont to do, but when it wouldn’t go away and kept getting worse, I went to the doctor. Even though he didn’t freak out, telling 3 was the worst part of the whole deal, but a few days of antibiotics put it all behind us.
My second STI came a couple-few years after that, trichomoniasis. I don’t remember any details other than, once again, having to tell 3. By that time I was promiscuous enough that it could’ve come from any number of the one-night stands I’d had. At that time, 3 was my only regular partner. I also remember that whatever antibiotics they gave me made me really sensitive to the sun and I broke out anytime I spent too much time outside while they were in my system.
A few months to a year after that, I had an ex-boyfriend from the year before tell me that his ex prior to me had contacted him about having genital warts. I had never noticed anything at all, but he said I should get checked. I went to the doctor, got thoroughly checked but was found to be negative*.
Several years later, however, my routine PAP smear came back abnormal. I was found to have some cervical dysplasia, i.e. abnormal cell growth. I had to have a follow-up colposcopy where they biopsied part of my cervix. The test results showed that I had HPV and was advised that I would have to get PAP smears every 6 months to keep an eye on it, as opposed to the recommended once a year. I have never had any other symptoms, particularly not any warts. I also have never had another abnormal PAP, even for my first 6-month test after my initial diagnosis.
Right here part of me wants to start throwing statistics out at you, like how anywhere from 50-80% of the entire sexually-active population has this or has been exposed, at the very least. But none of that made me feel better for a long while. The first person I told was my Mistress (with whom I never had any sort of sexual contact as she was truly more a friend than anything) and she kind of chuckled and said, “Awww, you have a virus,” like I’d just adopted a puppy. The next person I told was my then-girlfriend and she freaked out at first because she was a complete germaphobe. It did not ever become an issue between us. In the intervening 10+ years since then I have had no less than half a dozen close, personal friends tell me that they have it or have had it. While I can see how the conclusion could be drawn, I need to state for the record here that none of them contracted it from me.
There are several different strains of HPV, around 40 of which affect the genital areas. Some cause warts, some cause cancer, most do nothing. I don’t know the exact strain I have, but I never had a single symptom beyond the cervical dysplasia. Unfortunately I don’t know the information about contractability once you’ve had a breakout or the likelihood of another occurrence.
I was told by my doctors in the following years that, while it is commonly said that once you have HPV, you have it for life, that it’s not necessarily true. I know in my case I was told that I must have just had an “HPV infection” that my body took care of and that’s why it’s never recurred. Since that abnormal PAP and diagnosis was back in 2000, I’ve mostly forgotten about it. Like I said, I’ve never had any other reason to worry about it since.
My story doesn’t stop there, though. I wish I could say it did. The second week of February of this year, I had a full STI panel done, including the tests done during a PAP (chlamydia, trich, gonorrhea, HPV) and bloodwork (syphilis and “the 3 big H’s”: HIV, hepatitis and herpes). I wasn’t worried about anything in particular, it had just been a topic of conversation that kept popping up. My boyfriend and I have been together for over 5 years, and the only other partners we’ve had have been women who were friends of mine that did not have multiple partners. It had just been a while and, for me, once I start thinking about “what if” I can’t stop thinking about it.
I got tested on a Wednesday afternoon. The following Tuesday, which was Valentine’s Day, the nurse from my doctor’s office called and said that everything came back negative*. I asked her if she was sure, because my doc had told me that they couldn’t give results for HIV over the phone, that I had to come into the office. The nurse assured me that everything was negative. I breathed a sigh of relief and went on about my day and life.
Friday morning, I got another call from a different nurse. This nurse explained to me that there had been a mistake, that all of the test results had not come back. I tested positive for HSV II, herpes simplex virus 2. That’s the one that causes genital herpes (HSV I causes cold sores). I have never had any outbreaks, nor have I ever been with anyone with an active outbreak. Nor has anyone ever told me they had it. The nurse advised that my doctor would be willing to give me a call if I had any questions. I requested that she did.
As you can imagine, I was terribly upset at this news. I had been so relieved on Tuesday when I got the all clear and now that had been ripped away from me. All at once, every bad, stupid, risky decision I’d ever made in my youth came back to haunt me. I happened to be online chatting with my kitten when I got the news. She calmed me down considerably. In her words, “athlete’s foot is more annoying”. She was the first person to tell me that it’s no big deal.
My doctor called me back a few hours later. She told me that there’s no way of knowing when, how, or from whom I contracted it, since I didn’t know that I’d ever been tested. She also told me that if my boyfriend or other partners have never had an outbreak, there’s no reason for them to get tested either. It’s just something I’m going to carry from now on that will most likely never have any real impact on my life. She also told me it’s no big deal.
Next I had to tell Roland. Being that this was the first day of my Epic Weekend, I had already planned to leave work early at lunch time. I sent him a message that I was driving over because I needed to talk to him about something. I got there, we stepped outside to my car to talk, and he took it much better than I expected he would. I passed along all of the information my doctor had given me and some more that I had researched. I stressed that, from my understanding, it was no big deal. We hugged and he went back to work. I went to go meet up with Lucy, Tammy, and Arthur.
One of the most upsetting parts for both of us was the timing, in that it happened right on the cusp of what was hoped to be a weekend-long orgy. This new information went a long way to killing any desire for that and is a big part of why I didn’t participate in any activities. However when I separately told Lucy, Tammy, and Arthur, they each told me exactly what I had heard all along—it’s no big deal.
I’ve since learned a lot more about HSV I and II, just like I did with HPV. Approximately 1 in 5 people carries it and more have been exposed. I don’t know that I had ever been specifically tested for HSV before, because I was always acting under the knowledge that if you had HSV, you have or have had a herpes outbreak, which I never have. It turns out that, while it’s not carried in your bloodstream, if you don’t have an outbreak the antibodies can still be detected by a blood test. It lives, so to speak, in a specific group of nerve endings but if you’ve never had an outbreak, there’s no way of telling which group. But not in all of them.
If you’re going to have an outbreak, you have one within 2-3 weeks of contracting HSV. If you don’t then, chances are you never will. It’s mostly contracted by having sex with someone with an active outbreak. Although if you are seropositive (which is what it’s called when you test positive for the antibodies) and asymptomatic, if you use a condom you have only a 1% chance per year of transmitting it to another person. If you don’t use a condom, that only increases to 2%.
For research on this post, I listened to Dan Savage’s Savage Lovecast podcast episode 195 on the topic. He and his guest on the episode, Dr. Anna Kaminski from Planned Parenthood, recommended The Herpes Handbook, which does a far better job of educating than I ever could.
Putting it all down in words like this hasn’t been easy as I thought it would be. It really makes me look back over all the stupid chances I took. It makes me feel dirty and contaminated all over again. I feel like a veritable petri dish. But that feeling does pass. I guess that’s the gist of what I wanted to share with you.
I also feel the need to share that my unsafe sex practices ended many years ago. While Roland and I do not use any sort of barrier protection with each other, protection is always used with any other partners he and I may have, even before such time as my diagnosis.
I’m not sure what else I wanted to say or where I’m going with this now. But I feel like if I don’t post this right now, I may change my mind. I had given a lot of consideration to posting it on the Anonymous blog hosted by Molly, but I feel that would take away from my purpose of trying to combat the shame and fear associated with this topic. I hope it helped in some way. Please don’t hesitate to contact me with any questions or comments.
* Two instances of using the word “clean” where edited to “negative.” I completely disapprove of the “clean vs. dirty” description regarding test results.
Update March 14, 2013:
I just wanted to share that in the time that has passed since this was originally published Roland had a full STI panel, which was negative for everything including HSV2, but positive for HSV1. As a result, I got retested a few months ago. My HSV2 positive was confirmed by a different lab. I have still never had an outbreak or occurrence of herpes, although I do remember having cold sores on my mouth as a child. I do not have HSV1, which normally causes cold sores. My mother was beset by frequent cold sores on her mouth for all of my life, which makes me wonder if perhaps she had HSV2 on her mouth.
Update August 12, 2015:
I posted this as a blog on FetLife about a year after I made this original post. After the initial post, I continued to update it with any resources I could find. I am now including links to those resources here as well.
The Truth About HSV-1 and HSV-2
Herpes Virus Facts
Herpes: HSV 1 & 2 at Life On The Swingset
The Top Ten Questions About Genital Herpes: Everything You Always Wanted to Know but Were Afraid to Ask
Mollena: I’m the 48%
Oh Joy Sex Toy: Herpes
What Is Herpes?
Protecting Against Herpes
Ethics of screening for asymptomatic herpes virus type 2 infection *added 7/24/14*
You Probably Have Herpes *added 7/30/14*
Reddit AMA (Ask Me Anything) with a virologist about herpes *added 7/30/14*
Herpes Simplex Infections *added 7/30/14*
Herpes-Coldsores Support Network *added 7/30/14*
NY Times Health Guide about Herpes Simplex *added 7/30/14*
37 Herpes Facts You Need to Know *added 7/30/14*
American Academy of Dermatolgy, search “herpes” *added 7/30/14*
American Sexual Health Association, Herpes *added 7/30/14*
A Plague on Both Your Houses *added 9/22/14*
How Herpes Saved My Life – by Midori *added 12/6/14*
HerpeSite *added 1/21/15*
The STD Project *added 8/13/15*
7 Things You Should Never Say to Someone With Herpes *added 8/13/15*
Why I Love Telling People I Have Herpes *added 8/13/15*
Ella Dawson’s (the chick that wrote ^ those 2 great articles) Herpes blog archive *added 8/13/15*
a smidge of herpes *added 8/13/15*
What I decided to do when the guy I was dating told me he has herpes *added 8/13/15*