For One Nightmarish Year, Doctors Couldn't Tell Me Whether or Not I Had Herpes
It was eight months ago when a gynecologist took a seat between my legs and instantly said, “Oh yes. This is definitely genital herpes.”
Everything stopped: the whirring of the bright lights, the ticking of the clock, all the breath in the room. Hot tears leaked out of my eyes and down my cheeks. I was 27 years old.
For the next eight months, I'd be on a roller coaster of suffering through a painful viral outbreak, several conflicting diagnoses, and learning first-hand the ugly stigmas surrounding one of the the most prevalent STDs on the planet.
Cultures and blood tests don't always agree
A week after my doctor's visit, I got the results of my tests. The culture for Herpes Type 2 (genital herpes) came back positive -- but the blood test was negative. The nurse delivering the news said given the culture’s result, I had herpes -- but added that the negative blood test did raise some eyebrows. She encouraged me to get retested at my next outbreak.
Considering the American Sexual Health Association promotes that blood tests for genital herpes are incredibly accurate, I'd say it makes a lot of sense that an eyebrow should have raised.
Nevertheless, whatever I had was absolutely excruciating. I was bedridden for four weeks, unable to go to the bathroom unless I was in a tub of water (and even still the pain left me crying), sitting and lying on ice packs at all hours of the day, and racked with a 104-degree fever.
When the pain subsided, I transitioned into the next stage of this STD: being soundly rejected time and again by guys I liked as soon as I told them I had herpes. It's hard in circumstances like this to not become convinced you're a terrible person: a slut, monster, scourge of the earth... you name it. This STD has a hell of a reputation.
I went from being told I had herpes, to being told I might not
The next time I found something resembling sores around my crotch, I paid my doctor another visit. I was sure it was a second outbreak, and I was ready to get retested. No more raised eyebrows, I wanted real answers: If I was living as someone who had Herpes when I really didn’t have Herpes, I wanted the nightmare to end NOW.
But It wasn't another outbreak. He looked at it and said, “That’s not herpes,” with the same conviction he used eight months prior for a different diagnosis. He reviewed my initial test results. “This is impossible,” he said. “How can you have a positive culture and negative blood test? One of these tests is incorrect.”
He ordered another blood test immediately. And for the first time in eight months, it looked like there might be a light at the end of a very long, frightening tunnel.
There is a serious problem with STD testing in this country
Turns out herpes is misdiagnosed 20% of the time, with professionals mistaking everything from fungal and yeast infections to other skin conditions for the STD. The tests themselves are also inaccurate; failing to detect up to 25% of "true positive" cases. It can take up to 16 weeks to for virtually anyone with herpes to have the antibodies show up in an STD blood test.
Not only that, but a culture's accuracy decreases dramatically after the first 48 hours of the sores’ initial appearance, according to the American Sexual Health Association (ASHA). My culture swab was taken four days after the sores appeared, causing my doctor to believe it could have produced inaccurate results.
The closest thing Herpes diagnostic processes have to 100% accuracy is something called the Western Blot, a serologic or blood test that has 99% accurate results. But that test is only available through the University of Washington -- a fact I found hard to believe until I called the Virology Lab at Washington U to confirm. And sure enough, they told me that they are the ONLY FACILITY IN THE ENTIRE COUNTRY that can offer a clear herpes diagnosis. So, an STD that allegedly affects one in five Americans can only be tested with accuracy at ONE medical facility.
Given this clusterfuck, it seemed that my test results very well could be inaccurate, and I wasn’t alone. While researching, I discovered that three of my close friends also got herpes misdiagnoses.
Treatment for herpes relies on consistent test results
My second round of blood results come back positive for Herpes Type 2. But given my lack of outbreaks (zero in the eight months since my initial diagnosis) and prior negative results, this see-sawing of results still wasn't conclusive enough to earn me a prescription for Valacyclovir, a daily medication that when used in conjunction with condoms reduces the risk of transmission to partners to 1.9%, according to medical studies conducted on patients with recurrent outbreaks.
Wanting to protect my future partners with such a low transmission rate, I visited an Infectious Disease Specialist. There I learned that someone like me, who is asymptomatic (no outbreaks), has a transmission rate even lower than 1.9%. In fact, according to an unpublished study performed by the doctor’s coworker, my transmission rate, when using condoms and immunosuppressive therapy like Valocyclovir, is closer to 0%.
The specialist said that, given such a low transmission risk, I really don’t have to disclose that I have it to future partners. If you find that hard to believe, then this will seem totally surreal: FOUR OTHER MEDICAL PROFESSIONALS repeated this sentiment... none of whom wished to be named in this article.
It's nearly impossible to get clear information on the herpes virus
Google “herpes” and you’ll get plenty of conflicting results: you will always transmit the virus during sex, you rarely transmit the virus during sex, you’ll have multiple outbreaks a year, you rarely have any outbreaks, if you have Type 1 then you can’t contract Type 2, having Type 1 does not exclude you from contracting Type 2, it’s not a big deal, it’s a really big deal, and on and on and on.
Even with the cloud of confusion shrouding herpes, one thing everyone agrees on is that it is one of the most common STDs, it is not life-threatening, and most people who have Herpes Type 2 (a whopping 81%) don’t know they have it.
Statistically, if you have had sex with more than four women or more than five men, you have already had sex with someone carrying the Herpes Type 2 virus. The reality is, most people with herpes don’t know they have it because the majority of the time, it's dormant and inactive... although still transmittable.
Actually, the Center for Disease Control’s website advocates NOT TESTING for Herpes because there is no proof that knowing if you have the disease or not will alter sexual behavior and thus limit transmission. Because there’s no proof of the benefits of testing, “the risk of shaming and stigmatizing people outweighs the potential benefits. For these reasons, testing everyone for Herpes is not recommended at this time.”
And there it is: our national standpoint on herpes testing: it's better to not know because you don't want your feelings to get hurt.
Life doesn't end at herpes
The abysmal public standing on Herpes testing leaves people like me, who DID get tested and DO know they have it, bearing the grunt of that shaming and stigmatizing the CDC is so concerned about. As a responsible adult, I choose to reveal to my partners that I have herpes; while 81% of people with my condition don’t -- in part because doctors won’t test for it without symptoms, even though the virus is asymptomatic the majority of our lives.
When I was diagnosed, I thought my life was over. My sentiments were confirmed a few months later, I met a man I wanted in my life for the long term. My diagnosis scared him away. And at the end of this scary year, when I was diagnosed AGAIN, I had to go through all that pain all over again -- or so I thought.
The reality is, herpes is more of a nuisance than a life-ending problem. If you manage it, are open with your partners, you quickly discover that living and dating with herpes is virtually the same as without it. I still have sex, I still date, I still eat cereal in my bed with no pants on. I’m still fantastic. The biggest problem with herpes? The medical community's conflicting methods of testing, and advice for those of us with it, has convinced everyone to think it’s the biggest problem.
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