I was on a family vacation in the middle of nowhere when the itching started. Having recently taken up cycling as a hobby, I figured the combination of tight spandex and the swampy humidity of July had given me a yeast infection. And the only thing worse than a yeast infection, is a yeast infection when you're stuck in the woods with your entire extended family. So I did what I do best in those types of situations. I texted my friend Katie* and whined about it.
"Are you sure it's a yeast infection?” she asked. Well yeah, I thought, what else could it be? I had recently tested clean on my last STD screen at my annual. "Yeah but you know they don't usually test for herpes right?" Katie had the great misfortune of getting herpes from the first guy she ever slept with. Since then, she'd been open and vocal about educating others about this very real health concern. While her descriptions of symptomless suitors and painful outbreaks had thoroughly terrified me in the past, I had never really considered myself at risk. Having only had two partners, both of whom I was in monogamous relationships with, and both of whom I used condoms with at all times, I was pretty much the poster child for safe sex.
I visited an urgent care when I got home and got swabbed for a yeast infection. The swab turned out to be positive, and meds quickly cleared up my itchy symptoms. But Katie had set a nagging worry in my head. I decided to just bite the bullet and get tested for my own peace of mind. Since I live an hour away from my gynecologist and was just looking for the most convenient way to get tested, I found a website that could send a lab order for the STD tests to my local walk-in lab, where I could get my blood drawn without having to make an appointment.
A week later, I was lying in bed when my lab results popped up via email. I opened them nonchalantly, but froze midway down the screen. Herpes II – Positive. My stomach dropped. An instant panic attack ensued. But, I had never had symptoms! My partners had never had symptoms! We always used condoms! How was this possible?! An intensive bout of Googling confirmed my worst fears.
Two strains of herpes exist, HSV-1 and HSV-2. Of the two, I had tested positive for genital herpes, HSV-2 with an index value of 2.0 (Any index value above 1.1 is considered positive). HSV-2 can lead to painful and reoccurring outbreaks of sores and blisters in the genital area, or, show no symptoms at all. It is incurable and is transmitted via skin cells, not fluids, so even condoms don't offer full protection. According to the CDC, about 16 percent of people are infected with HSV-2, yet of those bunch, about 81 percent don't know they have it. These stats didn't make me feel any better. As far as I was concerned, I was now destined to die alone, diseased, and untouchable. On the plus side, I at least appeared to be asymptomatic.
Laying on a pillow soaked with tears that night, I realized I had some uncomfortable phone calls to make. Speaking to exes is never fun, especially if you didn't part on the best of terms. Having the "You might have herpes, courtesy of me or you" talk is even less fun. They both took the news surprisingly well, in that neither of them had any knowledge of herpes, so they seemed more confused than anything else (but we used condoms! But I don't have any symptoms!). They promised to get tested as soon as possible. Guy #1 even apologized for potentially giving it to me. I couldn't be mad. It's a commonly asymptomatic virus that nobody tests for—how could we have known?
Finally Getting Some Answers
The next morning, I skipped work and went to see my gynecologist with test results in hand. As the nurse took my vitals, she asked for the purpose of my visit. I barely managed to say herpes before I burst into tears again. As she left the room she attempted what I suppose was a stab at empathy, "Don't worry, it's not one of the bad ones. It won't kill you or anything." Uh. Thanks. You should maybe work on your bedside manner.
After the nurse, I wasn't sure what kind of reaction to expect from my gynecologist. What I didn't expect, was for her to roll her eyes. "Have you had any symptoms? How many partners have you had? Do they have any symptoms?" I answered her questions and she glanced again at my test results. "You're very low risk and you have a low index value. I don't think you need to worry about this." All of a sudden, the knots that had been in my stomach for the past 24 hours unraveled. But I didn't understand. My index value, while low, was still above the diagnostic 1.1 standard. Didn't that mean I had antibodies in my blood to HSV-2? And didn’t that mean I had HSV-2? Well, not necessarily.
According to Christine Johnston, M.D., M.P.H., of the University of Washington Division of Allergy & Infectious Diseases, "Type-specific serologic testing looks for antibodies to HSV-1 and HSV-2 proteins. Sometimes there is cross reactivity between HSV-1 proteins and HSV-2 proteins. But, there can also just be other proteins that would cause an antibody response." Translation: Testing positive for the antibodies doesn't necessarily mean you have herpes.
In fact, according to a study done at the University of Washington, among low-risk patients in the study, 61 percent of those who tested positive for HSV-2 but showed no signs or symptoms of herpes and had an index value of less than 3.0 were not actually infected (according to later results from a more accurate test). So what does this all mean? It means that even though type-specific serologic testing is generally considered 95 percent accurate, according to Johnston, "There can be low positives. And if people are HSV-1 seropositive as well, that's when we really want to confirm those results with another test."
I asked my doctor, "So you think I don't have it, but technically, I could still have it right?" Perhaps I should just have just taken the good news and rolled with it, but I had done enough research to know there were factors she may not be accounting for. For example, I didn't test positive for HSV-1, so cross-reactivity with HSV-1 was out as a reason for my potential false positive.
She pulled up the CDC website on her laptop and highlighted a section for me. In an a FAQ section, under the question: "Why doesn't CDC recommend routine testing all sexually active people for genital herpes?" was the answer: "We need additional evaluation to understand the benefits of testing, including whether routine HSV-2 testing improves health and reduces spread of infection in the population. In addition, these tests can be expensive; false positive test results may occur in some persons with a low likelihood of infection; and the diagnosis may have adverse psychological effects for some people." (Yeah, I'll say.)
So I asked her what she would do if she were me. Would she feel the need to tell partners she may or may not have herpes? She tells me she wouldn't worry about it. It's what I wanted to hear, but I still can't shake the feeling that I should worry.
As my appointment ended, I asked my doctor if she could perform a culture swab, as I knew that the virus sheds in one’s skin cells intermittently, even if one doesn't have any symptoms (hence the danger of transmission from people who don’t know they have it). A positive culture swab would be definitive, and definitive is what I wanted. I could tell she thought I was being ridiculous, but she obliged. The test ended up coming back negative. For some reason, I was still not convinced.
A week later, I found out the second guy I had slept with had tested negative for herpes. The first guy, after hearing about my doctor's opinion and guy #2's test results, decided not to get tested, as he didn't trust the accuracy of the test. While in theory I understood his reluctance, I couldn't help but be a little annoyed. While the test may not have been accurate for me due to my low-risk classification and low index number, he was not as low risk, and a high index number would have been a fairly certain indicator that we both have it.
At this point in time, I'm still not sure if I have herpes or not. I know I've never had an outbreak. I know I had a negative culture swab at one point. I know one of the two guys I've slept with does not have it. I know I’m low risk and tested with a low positive in the "gray area" of testing (below 3.0). And I know my doctor thinks I don't have it. But all of these things, even totaled up, do not equate to a 100 percent negative diagnosis.
The only way to know for sure would be to have an outbreak or even more confirmatory testing. Unfortunately, the only confirmatory testing that currently exists and is considered 100 percent accurate is a test called the Western Blot. It is not covered by my insurance, and is only administered by the University of Washington. I sometimes question whether my reluctance to pursue this avenue is really a matter of the expense, the hassle of getting it done (via a mail shipment I’d have to convince my doctor to administer), or the fact that maybe a small part of me simply doesn't want to know.
What the Test Results Don't Tell You
Being diagnosed with herpes was one of the most emotionally distressing things that has ever happened to me. To be told you have an incurable disease that could negatively affect, even end, any relationship you pursue moving forward in life is, in a word, traumatic. The stigma surrounding herpes only makes it worse. I am writing this article anonymously because of that stigma.
When herpes is talked about, it is the punchline of a joke. It is used to describe people who are dirty and promiscuous. In reality, a lot of people just like me have it. A whole lot. In fact, if you type "Is there a cure for" into the search engine Bing, "herpes" is the very first term that pops up. And unfortunately, this stigma prevents people from being educated, either about the virus itself, or more importantly, the diagnostics.
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I was lucky enough to have a doctor who knows enough about herpes testing to question my diagnosis. As Johnston pointed out, while most herpes tests in general are considered 95 percent accurate, if you’re low risk, that rate drops. Unfortunately, that’s not something all doctors know about.
So do I regret getting the test done? Perhaps ignorance would have been bliss—the current screening recommendations seem to think so. But I don't agree; I'm glad to feel more informed and educated about my sexual health than before, even while I'm in somewhat of a limbo. And I think that the huge numbers of people who have herpes without knowing it only contribute to the stigma and lack of acceptance.
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That said, testing for herpes when you do not have symptoms—essentially going against the CDC's recommendations—isn’t the right plan for everyone. "It is a huge issue," says Johnston. "It's very hard to know what to do because the guidelines say don’t get tested, but then you have an ostrich with its head in the sand. The CDC certainly recommends against routine testing, but they do say to consider testing in people who are at higher risk. And you can't take steps to protect yourself if you don’t know your status or your partner’s status. I think women should consider getting tested after assessing their risk and be informed and aware of some of the pitfalls of the testing."
Moving forward, I'm not yet sure what I'll tell my future partners. I’m now somewhat convinced the entire population is a giant petri dish of disease, so it may be awhile before I even have to have that conversation. Saying nothing would feel untruthful to me, even if saying something may be completely unnecessary. I may just print out this article, hand it to them, and let them decide. My friend Katie? She has never had a guy end a relationship with her after finding out about her diagnosis. As she has told me many a time, “If they really like you, it won’t matter.” And that gives me a lot of hope.
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