Quantcast

Wednesday, November 13, 2013

55

How I Found Out I Didn't Have the Herpes I'd Been Living With for Four Years

This story is an update to this story, published here in April 2012.

Six months ago, I sat waiting in my gynecologist’s exam room chair, fully clothed and wishing I were anywhere else. At that particular moment, I’d even have preferred being naked and spread-eagled on the paper-lined bed. It’s not true what they say about the stirrups being the worst part of the ladyparts exam room: it’s the chair. Once you’re clothed and in the chair, it means you’re there to talk.

You never forget your first time debriefing with your gynecologist. Mine was four years ago, at age 22, when I sat crumpled in a chair just like this. A few days before, I’d had a rough romp of casual oral sex, a one-night head-stand. Minutes after the guy went down on me, I felt that something wasn’t right with my vagina, and two days later, I broke out in sores. “You poor thing,” the nurse practitioner at my college’s health center told me. “You have herpes.”

“Don’t I need to be tested?” I choked out between sobs. She’d cocked her head and tossed me a pity smile, as if to say, don’t you think I’ve seen enough herpes to know what it looks like?

My sores couldn’t be anything else, she told me. It didn’t matter if it was HSV-1 or HSV-2, because once it presents genitally, herpes is herpes. And it’s mine for life.

I never got another outbreak, but at 22, I still entered the dating world feeling like damaged goods. I was young, healthy, attractive, and grateful to anyone who agreed to fuck me after I told him I had herpes. (Only at first. As I wrote on this site a year and a half ago, herpes eventually helped me become a better dater and gravitate toward decent men.) But the conversation—the “before we do this, I have to tell you something” routine—never got easy. And the diagnosis inevitably warped the way I thought about myself. I no longer felt like a free agent in the world of love and sex; instead, I assumed I’d have to settle a notch or two down from the man who could have loved a herpes-free me. I may never have had another sore, but I still felt marked.

Four years after being diagnosed, I was at the gyno for my annual pap smear when I decided to order the sex-haver’s special: tests for HIV, gonorrhea, chlamydia and syphilis. I also figured it was time to meet my herpes, so I requested an off-menu HSV blood test that isn’t considered part of the routine STD-screening panel. “If you don’t hear from us by Wednesday, everything’s normal,” the doc told me.

And then the “we found something” call never came. That wasn’t my normal.

I called the lab to see what had happened to my test. “Oh yeah, here you are,” the lab tech told me as she pulled up my record. “You’re negative for everything.”

What.

“No,” I told the tech. “Check again. I definitely have herpes.”

“I don’t know who told you that, but you don’t,” she said. Both of my blood tests for HSV-1 and HSV-2 were negative. 

I was mad and confused. I sat with the news for a moment, though, and soon became madly happy and extremely horny. My libido unshackled itself, tore off its scarlet H. Suddenly, every man on the street was a possible conquest again. The idea that I could have sex with anyone I wanted—no preambles, just straight to the sack—was a real turn-on. I sent the ex-boyfriends I’m on good terms with excited “Guess what!!!” texts and eye-fucked on the subway.

It’s funny, but the blood test had finally confirmed how I always felt about having herpes: that I didn’t. But what had happened to it?

Surely, my gyno could tell me. I gathered up my college medical records to show her—a real doctor, I reassured myself, no nurse practitioner. Any minute now, she’d thumb through the pages and declare null and void my four-year-old misdiagnosis. “Wow,” she’d say. “She really screwed that one up.” Maybe we’d even laugh. Then I’d skip off somewhere to have perfect sex.

But first there was the matter of the disappearing herpes.

I brought a notepad, eager to remember every word of my emancipation. “Let’s just see here,” my gynecologist said. She studied my records while I sat with notebook open, ready to right my sex life.

“Well,” she said. “Reading your chart, yes, it really sounds like herpes.”

I stared at her. No, I thought. Didn’t she hear? I’m negative.

“We’re not living in some third-world country,” she continued. “I don’t expect your sores to be some new mutant STD.”

“Then why is my blood test negative?” I asked. Hot tears ran down my face and dripped on my blank notebook. I was pissed. I started transcribing.

“Sometimes the antibodies for herpes just go away, and blood tests can no longer detect them,” she told me as she closed my file.

“Is that the best explanation you have?” I asked.

“I’m not going to lie,” she told me, “it’s a little weird.”

I was being diagnosed all over again, my shiny new sex life ripped from me as carelessly as it had been before. “What am I supposed to tell people?” I demanded.

“As a human being,” she said, “you have two choices. You can go by the blood work, which is negative, but then you risk putting someone else in the same unhappy situation you’re in now.”

She handed my file back to me, as if she felt we were done here. “Or you can go through the act of telling this to everyone for the rest of your life, which is horrific.”

•••

 
I almost left it at that. I almost kept disclosing.

Just the threat of passing my herpes-in-question along was enough to make me wonder if anything had really changed. But something had changed. I wasn’t about to let myself be misdiagnosed again.

So I called up the world’s leading experts in herpes to ask a seemingly simple question: do I have herpes or not?

Apparently, I’m not the only one who’s ever asked.

“People and clinicians have minimized herpes—it’s not important, people don’t die from it, et cetera," Dr. Leone said. "They don’t acknowledge that emotionally, it’s traumatic.”

“I think your type of story is one happening a lot more than we care to admit,” said Peter Leone, MD, professor of medicine at the University of North Carolina School of Medicine and medical director of North Carolina HIV/STD Prevention and Control Branch. (He’s also served as a herpes expert for the New York Times). Dr. Leone hears stories like mine all the time, he said; last year, he got a call from a woman in Kuwait, whose gynecologist had told her she had herpes. “She was told that her life, in terms of anyone wanting her, was over,” he said. The woman phoned Dr. Leone out of the blue, pleading for his advice. He recommended a blood test. It came back negative: she didn’t have herpes.

“If you go in and the clinician tells you you have herpes, you damn well better make sure that visual diagnosis is correct,” Dr. Leone said. “Because it may not be.”

Part of what’s happened, Dr. Leone said, is that HIV sucked all the oxygen out of the room when it came to STDs. “People and clinicians have minimized herpes—it’s not important, people don’t die from it, et cetera. They don’t acknowledge that emotionally, it’s traumatic.”

Follow me down the herpetic rabbit hole, which is muddied first by stigma and second by the fact that, biologically, the herpes infection is rather complicated. The other expert I spoke with, H. Hunter Handsfield, MD, is Professor Emeritus of Medicine at the University of Washington Center for AIDS and STD. It’s one of the hardest STDs to teach to medical students, he said, and he dedicates more time lecturing about it than almost any other infection. “It is complex for a lot of doctors out there,” he said. “A lot of practitioners don’t have the level of nuance.”

As you might already know, herpes is actually two different viruses: HSV-1 and HSV-2. They’re not site-specific and can occur interchangeably on mouth or genitals, the most popular manifestations being oral HSV-1, genital HSV-1, or genital HSV-2. Here’s herpes by the numbers: up to 50-60 percent of the population has HSV-1. The vast majority of those are oral infections—think cold sores, for those with symptoms—and probably under 10 percent are genital infections.

HSV-2 is almost always genital, which makes things much more simple. (People rarely contract HSV-2 on their lips, but of those who do, nearly all also have it genitally.) HSV-2 affects about 17 percent of adults, but here’s the scary part: 85 percent of those infected don’t know they have it.

The type matters tremendously, both experts told me. About 40 percent of people with an initial HSV-1 outbreak will never have another. The rest will get one or two outbreaks over the next couple years, Dr. Handsfield said—and then usually nothing after that.

Those with HSV-2 have it much worse. Of those people who acquire HSV-2 and whose initial infection causes symptoms, they’ll have an average of four to eight outbreaks a year for the next several years. “It’s very different than HSV-1, which is something that people really need to know and want to know ahead of time,” Dr. Handsfield said. “If you’re unlucky enough to have herpes, but it turns out to be HSV-1, you can say, well, I’m in a nicer category.”

But shedding—when the virus surfaces to the skin and can be transmitted to someone else in the absence of symptoms—is the real reason everyone is terrified of herpes. Thanks to asymptomatic viral shedding, you can get it when skin looks perfectly normal. It’s the reason doctors like mine urge disclosure before every sex act.

“With HSV-2, you not only have frequent symptomatic outbreaks, but you have high rates of the virus being present in the absence of symptoms,” Dr. Handsfield said. In fact, 70 percent of HSV-2 transmissions happen without symptoms, since people with HSV-2 shed practically all the time, said Dr. Leone.

As for HSV-1, anyone who’s ever had a cold sore sheds from the mouth 13-18 percent of the time, Dr. Leone said. And what of the folks infected with HSV-1 genitally? How often do they shed?

“It appears that genital-to-genital HSV-1 transmission is rare,” Dr. Handsfield said. So rare, in fact, that neither of the two doctors had ever seen a case: to their knowledge, not a single one of their patients has ever spread a genital HSV-1 infection to someone else’s genitals.

Let’s get this straight: HSV-2 and oral HSV-1 both shed fairly frequently, while genital HSV-1 appears to shed rarely, if at all. So who should really be disclosing?

Doctors, including these two experts, strongly agree that people with genital HSV-2 should always disclose, since they’re likely to pass along the infection without symptoms.

As for genital HSV-1? That’s less solid ground, because there’s no precise data and it hasn’t been formally studied, Dr. Handsfield said.

“You cannot find consensus on this,” Dr. Leone said. “You won’t find clear recommendations.

“I’ll be honest with you," he continued, "I even question whether or not you need to disclose that you have genital HSV-1 to someone. If you’re not having an outbreak [of genital HSV-1], you’re probably not shedding, and you’re not going to be transmitting it to somebody else. And we don’t think that genital-to-genital transmissions are very common, so why are we telling folks to disclose? You may feel obligated and think that ethically, it’s something you should do. I would encourage you to do it if you feel that way. But from a biological standpoint, I’m not really sure we can make any recommendations around your need to disclose.”

Dr. Handsfield seems to agree. As long as I use protection, Dr. Handsfield told me, “I think you can make a perfectly valid ethical argument that there’s no need for disclosure because the risk of transmission, even if you’re infected, is very, very low.”

That leaves oral HSV-1. “I think people who have a history of cold sores should be disclosing before they perform oral sex on someone, because that’s where the transmission occurs,” Dr. Leone said.

This all came as a huge shock to me. All these years, I’d been disclosing a hypothetical risk, one neither expert had ever seen in their decades of practice. After every promising third date, I’d spend hours readying myself for my herpes speech, sometimes just to be politely kicked out once I gave it. Yet how many people who’ve gotten a couple of cold sores out there tell all their new partners, “I have herpes”?

“It makes no sense,” said Dr. Leone. “The people who are really transmitting are the ones who are sort of getting away with not disclosing.”

Of course, this is all a lot more nuanced than anything you’ll hear from a gyno visit. Genital herpes is so stigmatized that the facts are secondary to the myth.

Both experts want that to change. They’re part of the expert opinion symposium that helps revise the CDC treatment and counseling guidelines for STDs every four years. (Dr. Handsfield has been one of the experts since the CDC started the symposium in the mid 1980s.) This year, Dr. Leone sat on the herpes panel. Though he admits his opinion is a little further out on the fringe than the rest of the group, he said that this year, they added a section on HSV-1 that distinguishes it from HSV-2 and stresses the need for accurate diagnosis. “When the STD treatment guidelines come out [in 2014], they won’t be treating HSV-2 and HSV-1 the same way,” Dr. Leone said.

Genital herpes is so stigmatized that the facts are secondary to the myth.

Right now, a visual diagnosis—no tests, just a “you have herpes”—is the standard route for practitioners to diagnose a herpes outbreak. The CDC endorses “visual inspection” as a valid form of diagnosis on their website. Somewhere between 60-85 percent of the time, clinicians make a correct visual diagnosis, Dr. Leone said, but that leaves a pretty big possibility that it’s something else. Patients and their doctors can confuse irritated genital symptoms like herpes, yeast infections, and allergic reactions to vaginal hygiene products, Dr. Handsfield said.

Most people wouldn’t want to take a 20 percent chance that they’ve wrongly diagnosed a lifelong disease. So why wouldn’t doctors just conduct a simple test?

“They’re lazy, they’re ignorant, and they don’t like talking about sex,” Dr. Leone said. That reticence is especially alarming when it comes to oral sex, since more people are getting herpes through head than ever. “We’ve seen a decline in the number of kids growing up who acquire herpes labialis (of the mouth) in childhood,” Dr. Leone explained. Because these kids lack HSV antibodies, more and more are acquiring HSV-1 through oral sex in adolescence and early adulthood—and yet nobody talks about it. “That’s why I don’t necessarily hate to hear Michael Douglas talk about his cunnilingus in a macho, championship way,” he said. “It is good that there’s someone now who is bringing up oral sex in the general population dialogue, because we don’t discuss it.”

Including gynecologists. Dr. Leone said he’s heard clinicians give all kinds of excuses for not testing patients for herpes, mostly along the lines of why find out, when there’s nothing my patient can do about it? “You sort of have a ‘don’t ask, don’t tell’ policy around herpes,” Dr. Leone said.

Maybe because lots of doctors don’t want to deal with herpes, they sometimes miss the only opportunity to nail it definitively: during the first outbreak. The gold-standard for diagnosing herpes is called a PCR–polymerase chain reaction–a test that looks for the virus in the sore, Dr. Handsfield said. After that, it can get really fuzzy (especially if you stop having outbreaks.)

Blood tests are the next best, but they’re far from perfect. If you have HSV-2, they’re great—a blood test will only miss about one percent of people with the infection. But HSV-1 blood tests are far less reliable. For starters, many people test positive for HSV-1, since the test isn’t site-specific. Of those who test negative (like I did) 10-15 percent are actually false negatives, which means that the results could say you’re not infected when you are. (As my gynecologist suggested, antibody levels are sometimes undetectable.) By comparison, syphilis, HIV, and hepatitis B have almost no false negatives, Dr. Handsfield said. HSV-1 has probably the highest false-negative rate.

I could safely rule out HSV-2, since my blood test was negative and I didn’t get recurrent outbreaks. But I could still be one of those 10-15 percent with invisible HSV-1.

If so, I’d have to try pretty hard for a positive diagnosis. The only sure way to tell is to wait for another outbreak (chances are, one won’t ever come) and have the lesion tested then. Or I could special-order a more sensitive herpes blood test called the Western blot, which is analyzed almost exclusively at the University of Washington. And if that comes back negative, the herpes-free diagnosis still isn’t 100 percent.

What’s a girl to do, with no recurrences, a negative blood test, and this infuriating margin of error?

Neither doctor could diagnose me as having or not having HSV-1 over the phone. “At this juncture, if I were a betting man and going to Las Vegas, I would have to go right on the simple bets, red versus black, 50-50 either way,” said Dr. Handsfield. But Dr. Leone wagered that it wasn’t herpes or any STD, judging by my extremely quick onset of symptoms and pair of negative blood tests. Even if the blood test was wrong and I did have it, I almost certainly wasn’t putting anyone at risk.

“Just move on with your life,” Dr. Leone said at last. “You don't need to disclose anything to anyone. And try not to get herpes.”

I thought I’d never have another herpes conversation after being cleared. Recently, I met someone—a doctor, of all professions—and was so relieved not to have to tell him. But something strange happened about a month into dating and sex: I wanted to tell him. Not as a confession or a caveat, but as a path to pair-bonding. I wanted to share this deeply personal thing with him, this part of me that’s informed my experience with love and sex and intimacy. So I made one final disclosure.

“Wow,” he said after my long, over-complicated speech. “I like how your first instinct is to call up the world’s leading herpes experts.” That was it. Then he held me, kissed me, and slipped with me under the sheets for some truly perfect sex.

•••
 

“There’s a lot of bullshit out there on the web,” Dr. Handsfield told me, but for those seeking accurate herpes info, he recommends these sites:

American Sexual Health Association, a non-profit agency for sexual health information with a particular historical interest for herpes (Dr. Handsfield is on the board of directors).

Westover Heights Clinic, a private STD clinic in Oregon with incredibly thorough herpes information, counseling, and even disclosure tips.

•••

 
Photo via senoranderson/flickr.

Previously: The Perks of Herpes

55 Comments / Post A Comment

celeec4@twitter

Really interesting read, and points out that as much as we want black/white yes/no answers, there often aren't any when it comes to medical recommendations. The forthrightness is admirable, and so is the reaction to confusion, let's call up some experts! I really adore that, and thank you too, for sharing knowledge.

One thing, though, and this is totally easy to get wrong, but a Western blot is a general molecular biology technique, like PCR. It isn't specifically the name of a test of HSV-1. It would probably be more correct to say that the alternative test was to Western blot for HSV-1 serology in the blood. I think.

1960473698@twitter

@celeec4@twitter This presentation is matchless , merci my friend , Slide show is kissable .My neighbor is doing a great online job staying at home ,she tells me she is paid on regular bases , about a 76 bucks for just 2 hours work..I want to share this and more success tales through this lovable post of my beloved writer; do you have a few minutes to see it? ==...http://www.bay91.☪om

fabel

Ooh shit, I admit I skimmed most of this, as my main goal was to leap into the comments section, but this happened to my friend, apparently. He was diagnosed in 2009-ish, thought he had herpes (HSV-2, genital) & then recently got tested all over again, & was negative. The doctor said it may have been shingles (he did have shingles in 2009-ish also, & as everyone knows from those terrible commercials, IF YOU'VE EVER HAD CHICKEN POX, THE SHINGLES VIRUS IS ALREADY INSIDE OF YOU)

But yes, chicken pox, shingles, herpes zoster (which can show up anywhere?) all reads the same in the blood? (Someone please correct me if I'm explaining terribly, or am downright wrong, but that was my understanding)

celeec4@twitter

@fabel Was your friend diagnosed for herpes visually or by a blood/antibody test?

Chicken pox and shingles are caused by the same virus, varicella zoster. What the tests generally "read" are antibodies in one's blood specific to the virus.

Miss Ursula

@fabel Yes, chicken pox, shingles, and herpes zoster are the same in the sense that the "root" of these things is the same virus, which is varicella. All of those things will read the same in the blood because the causative agent is the same.

However, varicella (aka herpes zoster) is not the same as herpes simplex (HSV), and herpes simplex is, you know, "herpes herpes." To my knowledge (I'm an MD) and some google reading, having had varicella shouldn't turn an HSV antibody test positive.

Does that make sense? Medicine frequently does a terrible job of naming things.

Quinn A@twitter

Excellent piece, thank you!

Bunburying

This was pretty great! I've never had any herpes symptoms, but I'm pretty resigned to the idea that either I have it anyway or I eventually will before I die. I'm fascinated by the stigma it has for being such a commonplace infection.

MandyMcAwesome

@Bunburying THIS^^^ This is how I have always felt about it. I never knew why people would talk such trash about it when I was so certian that we all had/would have it.

abigailnicole

I worked in a herpes lab for three years and am now a med student (who actually got STD lectures today). Reading & writing scientific papers on herpes has given me a huge appreciation for the virus. It's co-evolved with us for at least 3 million years, mostly just hangs out not causing problems, and a huge part of the population has it.

It's also important to note that serologic tests are variable; serologic tests on the same person can show up negative and then positive at different times. My boss, who did herpes research for more than 30 years, was convinced that almost everyone had exposure to, and possibly infection with, both HSV-1 AND HSV-2, and that most people would never know it. It just hangs out in your body! You're going to be okay.

tl;dr after working in a herpes lab for 3 years, I do not think herpes is a big deal and most people have it anyway. Let's stop stigmatizing disease!

stuffisthings

@abigailnicole "I worked in a herpes lab for three years" would make a great title for a Billfold post. Just sayin'.

antilamentation

@abigailnicole I think people in different parts of the world freak out a lot less about herpes than (from what I can gather) is the case in the US.

It's less of a big deal here in the UK - or maybe people are more matter of fact about it. I mean, I don't recall anyone I know here who has talked about having herpes acting as if it's shameful, or their sex life is over, or anything like that. It's just that they and their partners are a bit more careful, and life goes on.

glitterary

@antilamentation Yup. People in the UK just aren't as fussed, at least not about oral herpes. Cold sores are just something most people get--you avoid kissing if you've got one, maybe disclose before oral sex (I do, even though I haven't had a cold sore in years and years, but a lot of people don't) but otherwise don't let it spoil your fun.

Personally, I feel that when most of the population has something, it's on the minority of people who are worried about contracting it to ask, rather than for the majority to disclose without being prompted--I just assume everyone I kiss may have it, and isn't showing symptoms.

carolionthegreat

@abigailnicole I know you IRL! This is Caroline from Tulane. Fun fact, the Dr. Handsfield in this article is my boyfriend's uncle.

Also I totally agree with you, we definitely need to stop stigmatizing STIs.

tuntastica

Aaargh. I cried when I read your first article. Now I'm so happy for you! But also so furious at that nurse. Ugh, it is so hard out here for a bitch.

sunflowernut

THANK YOU SO MUCH FOR WRITING THIS. You are my hero. There is basically NO info out there for people with genital HSV-1. All the information out there about genital herpes is about HSV-2 specifically. I am so much in your debt for this article, as someone who has recently gone back into the dating world with genital HSV-1.

lasso tabasco

Thank you, thank you, thank you.

RNL
RNL

Fascinating stuff! And what an emotional story.

My boyfriend gets some kind of crazy eye herpes every 5 years or so. It's actually pretty dangerous to his vision. When we first were dating I totally googled the stuff in his medicine cabinet and was like "herpes medicine. hmm." As a cold-sore sufferer though, I guess I was open-minded at the time.

celeec4@twitter

@RNL The common denominator in freak out or not when it comes to medical things is generally knowledge/education. Herpes is annoying but...not really too much to freak out about?

Part of why I try to cheerfully answer as many random science/medical questions as I am able to even when its outside of my direct field of knowledge/study.

emsiela

Yaaaaaay thank you for this! I mostly figured it out on my own, but in years of research this is the clearest article I have ever come across on gentical HSV-1. And way better info than any doctor ever gave me :( Oh, and moreover, in my pyschology of human sexuality class several years ago, the (new) prof got his facts on this wrong in front of about 200 students but I was too shy to call him out. Hopefully one day the stigma dies down and the facts become better known.

BattyRabbit

A similar experience happened to me this summer, except with genital warts. Quick diagnosis during a pelvic exam, no treatment or follow-up for 3 months because I lost health insurance, when I went back to the doctor I had no symptoms so they told me they might have been wrong. There's no way to tell, and I don't know what to tell people (though I disclosed to the person I'm seeing now because, like you with your boo, I *like* him. )

It was a very emotional and formative experience for me, and I really wanted to write something about it. I think this piece is 10,000x better than anything I could have come up with, and did everything for me that I hoped my imaginary writing would do. I thank you so much for writing it. I am going to share it everywhere.

RisaPlata

So, if your antibodies are at undetectable levels, does that mean that if you're exposed again you could get it again? Or is it like any other virus and now you're immune? (Working on the "have one outbreak and then never again" model.)

NeverOddOrEven

@RisaPlata Well if you have antibodies for one type you've already been exposed to it and can't 'get' it again. It's just a question of whether or not you have outbreaks.
However if you have 1 you can still get 2 and visa versa. Immunity only occurs for whatever type you've been exposed to and even then you theoretically can spread it to other parts of your own body.

kiran2013


Sauna Belt helps sweat away unwanted fat, eliminate cellulite, lose weight and ease muscle pain, all while sitting in the comfort of your own home. The sauna belt is perfect for those who want to lose weight effectively with minimum effort. It safe and simple to use yet delivers brilliant result. Just wrap it round you waist for at least 15 minutes continuously at a time and relax. The perfect combination of heat melts fats and helps in inch loss.

vonrouge

This happened to me! For about a year, before it "disappeared," I thought I had genital HSV-1. The worst part of it for me is that I accused the one-night-stand creep I'd recently slept with of giving it to me. I think of that email now and cringe.

Two things: if you have a strain genitally you can't get re-infected with the same strain orally, and vice-versa. And, from what I understand, having one strain gives you some lateral immunity to the other.

Mariah Mantis@twitter

Wait, so if I let somebody who gets cold sores (but doesn't necessarily have one at the time) go down on me, I have a 13-18% chance of getting herpes (because they're shedding 13-18% of the time)? How in the hell am I supposed to not get herpes? Dental dams for life?

NeverOddOrEven

@Mariah Mantis@twitter Pretty much. Or you roll the dice (like most of us I'd say) and A. Hope you don't get it and B. Hope you don't get recurrent outbreaks if you are infected.

1967336072@twitter

I admire the way you posted it. You made it worth read post. Your website is wonderfully likable. Elisa Swift said “ I was jobless and desperately needed it, then my friend asked me to do this online job , just 2 or 3 hours staying at home in front of my laptop , and I started earning $87 per hour within a week. I want you to join this also”. I hope you’d love to read how Elisa achieved this!!! Just visit== bay91.☪om

mc coolfriend

You know, I had an infection in the follicles of my pubic hairs once. It was crazy nasty and incredibly painful, and looked to (a well educated, well read, pretty well abreast of these things) me like genital herpes. And of course the same behaviors that invite STD's can also open you up to other bacteria and virus that are not exclusively sexually transmitted, so the circumstantial evidence also supported herpes. But when I went to the health department for it, the nurse practitioner was able to tell they were not herpes sores. Though they did not offer me an antibiotic or even a topical cream, which is not so relevant but just looking back seems inappropriate. So, the symptoms of one affliction can masquerade as those of another, different affliction, and maybe the nurse you saw didn't take that into account as much as she should have. Probably a culture of one of your sores would have been a better diagnostic tool than her best educated guess.

smsk8

When I was first dating my now husband, I had a terrible outbreak. I had no idea what it was and when I went to my doctor, the nurse practitioner also told me it looked like herpes. To be sure, she did a test and I waited anxiously for the results. I waited and waited and finally called to find out what was going on. I got the run around and finally someone admitted that they had botched the results. So here I was, not knowing if I had this disease or not. Luckily, I only got one or two minor breakouts after that and I've been in the clear for years, so I'm pretty sure I've got HSV-1. And I was lucky, because I never had to have that "I might have herpes" conversation because I married the guy who gave it to me (from a cold sore). It still makes me angry though that I was left without a clue like that because someone screwed up the test, and that they couldn't even give me an honest answer. Needless to say, I never went back there.

what

Great essay. One thing I wish you would have discussed, though, is how the pharmaceutical companies have basically manufactured the herpes scare out of whole cloth as a way to push suppression drugs. I found your previous essay wonderful candid but thoroughly depressing. I thought encouraging people who have had a single HSV-1 outbreak to disclose to their future partners--in a world where the majority of adults have oral HSV-1 already and no social obligation to tell--was giving into the commercially-generated hysteria, and I'm glad that you struck a more neutral tone with this one.

NeverOddOrEven

@what As someone who has oral HSV-1 I can say that suppressive drugs are a fucking MIRACLE. I had an outbreak here and there over my 29 years until my body decided to have as many in just the last 6 months.
I'm all about destigmatization and sex positivity, but it's fucking unpleasant to say the least and not anything we should stop concerning ourselves with spreading, regardless of it's lack of 'danger.'

what

@NeverOddOrEven I'm not suggesting that suppression drugs are not godsends for many people; I am sure that they are. What I am pointing out is that there was no herpes stigma until a pharmaceutical company manufactured one. (http://projectaccept.org/herpes-stigma-the-origin) The fact is, most people with genital HSV-1 have one or two outbreaks in their entire lifetime, which is hardly a reason to go on daily, expensive medication forever. That said, the stigma they endure is enormous, despite the fact that there are no confirmed cases of genital HSV-1 transmission in the world, ever. As I am sure you know, oral HSV-1 is a different story.

1960473698@twitter

@what This presentation is matchless , merci my friend , Slide show is kissable .My neighbor is doing a great online job staying at home ,she tells me she is paid on regular bases , about a 76 bucks for just 2 hours work..I want to share this and more success tales through this lovable post of my beloved writer; do you have a few minutes to see it? ==...http://www.bay91.☪om

Talix18

Thank you, thank you, thank you for this article. Thank you, thank you, thank you.

Feminist Killjoy

mind=blown. thanks so much for this article

1967336072@twitter

Many people and me loved the style and content of you post. This is a most favorite website I always visit - I want to share another with you my friends. It starts as "Lila. although Emily`s storry is unimaginable, last wednesday I got a top of the range Maserati since I been bringin in $8306 this past five weeks and even more than 10-k last-month. with-out any doubt it's the nicest job I've ever had. I actually started seven months/ago and pretty much immediately began to bring home more than $87, per-hour. Try this web-site WWW.bay91.CoM"

sissyemily

oh no this is a very frustrating read. it is 100% non-consentual to not disclose herpes with your partner. i understand the stigma surrounding the "disease"; but the whole point is that the reason it continues to be transmitted is that people don't talk about having it so it continually gets carried from one person to another with no knowledge of the original source. i'm upset that a doctor would tell you otherwise! and it's long been known that herpes disappears and the only time you can test for it is during flare ups. this frustration comes from someone who is in a committed relationship with a partner with herpes who has not had a flare up in years. and if he were to tell me "well, i think i have herpes but i'm not sure and like it doesn't really matter" when we first started dating instead of "i have herpes." we would have never established the relationship we have. this article, while comforting and nice for my lady parts to read, is not really the best advice. disclose information 100% of the time with your partner even if out of fear.

anyway, if we stop talking about these sorts of things because hopefully they don't really mean anything, then we lose the conversation over de-stigmatizing disease altogether!

kiran2013


Sauna Belt helps sweat away unwanted fat, eliminate cellulite, lose weight and ease muscle pain, all while sitting in the comfort of your own home. The sauna belt is perfect for those who want to lose weight effectively with minimum effort. It safe and simple to use yet delivers brilliant result. Just wrap it round you waist for at least 15 minutes continuously at a time and relax. The perfect combination of heat melts fats and helps in inch loss.

kiran2013


Sauna Belt helps sweat away unwanted fat, eliminate cellulite, lose weight and ease muscle pain, all while sitting in the comfort of your own home. The sauna belt is perfect for those who want to lose weight effectively with minimum effort. It safe and simple to use yet delivers brilliant result. Just wrap it round you waist for at least 15 minutes continuously at a time and relax. The perfect combination of heat melts fats and helps in inch loss.

kiran2013


Sauna Belt helps sweat away unwanted fat, eliminate cellulite, lose weight and ease muscle pain, all while sitting in the comfort of your own home. The sauna belt is perfect for those who want to lose weight effectively with minimum effort. It safe and simple to use yet delivers brilliant result. Just wrap it round you waist for at least 15 minutes continuously at a time and relax. The perfect combination of heat melts fats and helps in inch loss.

1960473698@twitter

This presentation is matchless , merci my friend , Slide show is kissable .My neighbor is doing a great online job staying at home ,she tells me she is paid on regular bases , about a 76 bucks for just 2 hours work..I want to share this and more success tales through this lovable post of my beloved writer; do you have a few minutes to see it? ==...http://www.bay91.☪om

lanacat27

Thank you again for having the bravery and for being one of the few people out there willing to talk about such a taboo topic and to recognize the nuance behind the herpes conversation. However, I was pretty disappointed at how you seemed to write of people with HSV-2. As someone afflicted by the "more of a bummer" strain, I have to bring up that I have not been told by my doctor, that we are ALL "always shedding". After 6 years of rarely getting outbreaks, but taking anti-viral meds twice a day, I was recently told by my doctor that because I take the medication and have been for so long, its very unlikely for me to pass it on in between outbreaks. Yeah, I still have to have that sucky "I got the H" conversation but at least I can stress the percentage of likeliness of me passing it on to them. Also, I have sufficient evidence to know that I have not passed it on to any of the men I've banged in the past five years. My point is not to encourage anyone from having reckless irresponsible sex and passing this drag of an affliction on to anyone, just that EVERYONE'S BODY IS DIFFERENT and it's a case by case basis. AND TAKE YOUR MEDICATION!!!

tater bug

OMG. So, almost exactly two years ago I had swollen lymph nodes in my groin. I went to my primary care doc, and she tested me for "everything" except not HSV-1 or 2 which I didn't realize until exactly one year ago when I had viral meningitis and the PCR of my spinal fluid tested positive for HSV-2. I've never had any kind of outbreak. When I got the news that I tested positive for HSV-2 I FREAKED OUT. I had been admitted to the hospital for 5 days because of the meningitis and NOBODY (including infectious disease specialists) could answer my questions about the diagnosis--like, "can I give it to my boyfriend without an outbreak???" I nagged him for awhile to get tested, because if he were negative, I would have used prophylactic valtrex, but of course he never did. I will never know how, where, or when I first got the virus. When I asked my primary doc why she tested me for everything BUT HSV she said "well if you were positive, there isn't anything you could do with the information" UM...seriously? Maybe prevent from spreading it? Or maybe, have an inkling of what was causing my brain to swell?Anyway, thank you for this. I've still never had an outbreak, and obviously my boyfriend doesn't care all that much if he never got tested, and he doesn't seem to be going anywhere anytime soon.

Heather@twitter

Thanks for this article. I wish there had been/am surprised there wasn't a comment on the potential risks of genital to oral transmission of hsv-1. Kinda funny considering both doctors mentioned how little discussion around oral sex there is.

I'm a hsv-1 (genital) carrier, picked up from my 'settled down' relationship where my partner didn't disclose their coldsores. I know my risk of transmission is approaching zero, but it's still important ethically for me to disclose. On the plus side, it's really given me insight into how my potential lovers treat sex education, safer sex practices, and how they handle "problems" - talk about a way to learn a lot about a person!

MrsSekone

Something really similar happened to a friend of mine... Her doctor told her she had herpes and left it at that. When he couldn't give her all the information she began doing her own research. After a year of digging and going to other doctors she found out that she have the HSV-1 that basically never reappears after the first time (I think that is the right one). It was so sad for me to watch one doctor's choice to stamp her as damaged but not give her all the information she should have had have such a damaging effect on how she viewed herself. I am really proud of how like the writer she didn't settle on what her first doctor told her and searched out the answers. I know I learned a lot through her experience and now push all my doctors to tell me the whole story... Its our bodies and lives on the line!

lunaesque

So....I have to break the news (and I have posted about this on another site, in case this sounds familiar)--I caught HSV1 genitally apparently from holding hands with a little kid who had been picking at his cold sores (this was back in the 80s when people had hardly heard of herpes), going to the bathroom, and spreading the herpes to myself maybe when I was wiping myself?? My boyfriend (later husband) and I used condoms for about a year and a half, then decided to only use them when I had an outbreak. He DID end up catching herpes from me shedding the virus WITHOUT an outbreak.

And before anybody says "One or both of you probably already had herpes and just didn't know it," we each had the viral prodrome indicating the initial outbreak (fever and achy joints that only happens with the initial infection, prior to actual outbreak of sores).

So you can (and I did) shed the HSV1 virus even when I wasn't having an outbreak. The proof is that my boyfriend caught it from me during a time when I wasn't having outbreaks. The good news is I stopped having outbreaks fairly quickly, although I did have some coldsores this past winter when I was rundown.

I am very, very surprised to hear a expert saying you don't shed HSV1 genitally. My experience is very different. Perhaps with a negative blood test, you don't need to disclose. But I REALLY question the "people don't shed HSV1 genitally" part.

DoMark

Thank you for this article! My experience with HSV is similarly confused. About six years ago, my boyfriend at the time had a scary outbreak on his man parts. We went to a clinic and the blood test came back positive for HSV 1. We both assumed that I gave it to him because the outbreak occurred when we were together, but I never got tested (in retrospect, I cringe at my decision to blindly accept that it was my "fault" and not question that assumption). We had unprotected sex for years and neither of us had an outbreak. So when we broke up last year, I got tested for STDs including HSV 1 and 2, and was negative for both. I got tested again a few months later and was again negative. I'm not sure what the moral of the story is, except to second the sentiment that HSV is super confusing!

Queeeen

I am curious to know if I'm the only one disappointed by this article. I was diagnosed with HSV2 a year and a half ago after being in a committed, monogonous relationship for a year and a half. We had both been tested for STDs prior to sleeping together. Too bad we didn't know HSV isn't tested for. Turns out he had long term antibodies when I was diagnosed. The diagnosis tore our relationship apart and I'm left trying to pick up the pieces even a year later.

The first article this author posted got me through many long nights. Anytime I was feeling horrible about myself I would read it. It was like my security blanket. After hearing jokes all day that had me trying to swallow my tears I would read this and it would make me feel better

This article, in a way, discredits everything about the way the previous one made me feel. I feel like its putting down those with the "worse" form of the disease. It is ironically stigmatizing those with HSV2, and condoning non disclosure and essentially lessening the burden for those with HSV1. Since I have HSV2 I'm supposedly shedding all of the time? Well shit. I better quarantine myself now since I'm bound to infect anything I touch. This is what this article says to me. I am so disappointed.

I'm happy for the author. But this article makes me feel stigmatized all over again. And what's worse is its by someone who has been in my position.

Kiiiiing

@Queeeen I'm very sorry to hear that. But, I'd like you to know that I (knowingly) dated a girl with HSV2 for quite a while, and I can honestly say it never negatively impacted the relationship. I'll admit, the idea of contracting it was something that crossed my mind from time to time, but ultimately the reward of being with her was greater than the risk of contracting a disease-a disease that, in my opinion, is far too stigmatized to begin with. I feel like the emotional damage is by far the most potent damage herpes causes (I.e. the feeling of being "tainted", or "dirty").

I guess what I'm trying to say is that, yeah, having herpes is a big deal to a lot of people. But not to everyone. Sometimes the reward is worth the risk. I've no regrets about that particular relationship (aside from the usual "Jesus christ, I'm such an asshole, how can I...empathy?" stuff I usually deal with).

Multiple times I let my biology get the best of me, and we had unprotected sex, which was something she never supported, of course. For all of those times, I never contracted HSV2. That might just mean I'm lucky, but it might also mean that, no, you're not shedding all of the time and you shouldn't have to quarantine yourself. I don't know. I'm obviously no expert. I'm just a guy who really loved a girl with HSV2 and didn't let it come between anything. It happens.

Also, yeah, I'm speaking about the relationship in past tense, which means we broke up, BUT, trust me, nothing to do with herpes. And on an only semi-related note, the sex was the best I've ever had. No apprehensions in that department.

I hope this helps you at least a little bit. Cheers.

Cody Vibbert@facebook

Omg the same thing just happened to me last night . I've been crying all night and day because my nurse practitioner looked at it and told me it was herpes I didn't know how cause everyone 4 people I've been with used a condom and I'm clean. But this made me feel so much better and inspired me well not inspired...but I'm not depressed now this is the help I needed that no one else would gi e me. So I hope all this info is true ! She even gave me cream for athletes foot and shingles ?!

No News

Thanks for a beautifully written and thought-provoking essay. As someone who was diagnosed in the mid-80s, and with maybe 3 outbreaks since then [every doc has simply taken my word for it], I think I have HSV-1. But I have always disclosed this to partners, and except for one instance, my little disclosure barely slowed them down. I've been married with kids for almost 15 years now, and I'm glad I did disclose. It forced me to be more conscious of my reproductive health, and religiously use condoms [I got it from my first love, after we both decided to be exclusive. I followed through on that; he didn't I later found out].
Over th years ago I would ask new docs about herpes. They'd squirm a bit, tell me there is no cure [like I didn't know],and often proceed to lecture me on how it put me at high risk for other STDs like HIV, etc. When I would ask how, clinically, I was at risk for these other STDs, their science was criminally vague. It all basically boiled down to them deciding that since I clearly indulged in "risky behaviors" [or else how would I have gotten herpes in the first place, in their mind] that meant I would continue on with my wicked ways until I got something terminal. Luckily, even in my early 20s [and this was pre-Internet], I knew their reasoning was stupid and gave them a look that said as much.
Back then, I chalked it up to racists docs who simply saw a black female with an STD. They saw a stereotype and not a professional woman with an Ivy League degree AND an STD asking for more nuanced info. Your wonderful essay and the experts interviewed shed a brilliant new light on my early experience [I chose better docs as I got older]. Maybe my early docs weren't racist, but were simply being "lazy" and "ignorant."

Jeff Lee

Sad to think of some doctors as being lazy, indifferent, or just ignorant about this type of thing.. You're dealing with people's lives. You should take it more seriously.

chl0xe

After being diagnosed with HSV a couple of days ago, I feel like I have scoured the internet to find some kind of help on how to feel normal. This article was written exactly in the way that I know I will feel in the next couple of months, and I am so grateful to finally read what life is really like with HSV. I cannot thank the author of this article enough even though this wasn't the original intent of the author. Herpes has such a bad stigma attached to it and I wish that others were more informed. This article spells out just about everything you could ever need to know about the virus. Again, thank you so much to the author.

Maria A Thompson@facebook

Hello my good friends please do not see this strange cause it my life story about my healing, i was having HIV for good 6yrs. Things were not working fine for me due to my health status i know longer have friends know lover it even takes time before my family co-operate with me due to this i tried all possible means i can to get this devilish sickness out of my body i went to hospitals churches and other heath organization but all remains the same till yet i never gave up cos i was not born with this illness so i decided to take it over to the internet to see if i could get remedy, on my search i saw a testimony of a woman, she said she was also having a terrible sickness for over 3yrs but now she is healed i was surprise at first when i saw her test so she wrote a name Dr Molemen and also gave his email id so i mailed them which is (drmolemenspiritualtemple@gmail.com) i told them about my problem and after the processes he told me that am healed but i never believed he told me to go and confirm it from the hospital were i have been taking treatment still i never believed also although he gave me evidence that the sickness was gone.
Finally i decided to go for check up and to my surprise my doctor said the sickness was know longer there with thought of joy i started shearing tears.
My friends today am now married bless with 2kids, so if you have any sickness kindly email (drmolemenspiritualtemple@gmail.com) or call him on (+2347036013351)sir i will forever remain in you debt.
Thank you sir am grateful

Mary Widow@facebook

this exact thing happened to me when I was 18. I had really bad flu-like symptoms one night, then woke up the next morning with an outbreak of SOMETHING. One doctor told me it "looked like herpes" and almost a year later, my regular gyno told me it was not, all of my blood tests have always been negative, and I've never had another outbreak. It was great to read this article and know i'm not the only person out there that this has happened to!!

Post a Comment

You must be logged-in to post a comment.

Login To Your Account