November 4, 2022
Tomorrow, I’m meeting the fellow I’ve been dating for a few months, and we may be intimate. This is the second man with whom I’ve had this opportunity since my diagnosis.
The first, Don, thought he had herpes. He in fact reached out to me on a herpes subreddit. I suspected from the first he did not have herpes, and after seven months of browbeating him to get tested, he finally agreed. He tested negative. A woman his age, 44, asked him out the day after he received his negative test. I will take some responsibility for that! Had he not gotten that negative diagnosis, he might not have had the confidence to go on that first date. And she appears to be The One. He’s in love and I could not be happier for him. We’re friends. We will always be good friends.
It’s sad to me it took the negative test to jog him out of his complacency in staying with me, the much older friend and lover. But there’s no use in pretending having herpes doesn’t carry an incredible incredible stigma, and makes dating much too daunting a consideration for a majority of people that have it. The prospect of disclosure is what keeps people isolated. So unnecessary, so tragic. I hope to put a dent in that thwarted thinking.
This new fellow, David, does not have herpes. I’m the first woman he’s dated post-divorce, and the first he’s had this type of relationship with apart from his ex in over 30 years. We’re embarking on quite the adventure here. I anticipate it will go well, as we both committed early on to the communication required to build out a strong friendship. We’ve been very successful at that, and I’m quite proud of us both. He’s well educated on this STI and is going into this with eyes wide open. I’m very thankful he’s excited to walk this out with me. I feel comfortable with David, and he with me. It’s quite the lovely thing we’re building together.
I decided I’m going to repost this monthly. It’s just too too too important for all of us to know. This post on my blog currently has 3,252 views. That’s 3,252 people who now have enough information to relegate herpes to it’s rightful place —as a nuisance skin condition — nothing more. I’ve done a good thing, there. I’m very proud of this post. I do hope you’ll take the few minutes to read it. Whether or not you have herpes, this is invaluable information. Please share with your friends and family at will. I would be so honored if you shared.
Thank you for your love and support. You’ve made my life rich.
Love,
Coco
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January 6, 2022
This is a high-level compilation of the important stuff I’ve learned since receiving my HSV-2+ diagnosis in mid-September 2021. It is long and boring, but you should absolutely read it anyway.
After reading this, you’ll be better equipped to make informed decisions about your sexual choices. You will come to recognize herpes is a nuisance skin condition and does not cause any major health issues. Furthermore, the instance of transmission is very low if appropriate precautions are taken.
In other words, HERPES IS NOT A DEATH SENTENCE, and it is really not a very big deal.
Unfortunately, in our society, herpes has the next worst reputation to HIV. People constantly make jokes about it, adding to the persistent stigma, and making people who have genital herpes feel like shit. STOP DOING THAT!
HSV-1 vs. HSV-2
HSV-1 is traditionally referred to as “oral herpes”.
HSV-2 is traditionally referred to as “genital herpes”.
Genital herpes can be HSV-1 or HSV-2:
Excerpt: “Cold sores (aka mouth herpes mostly caused by HSV-1) can become genital herpes through oral sex (in fact, 50% of all new genital herpes cases are from oral sex).”
Prevalence of HSV-1
Roughly two-thirds of the world’s population has HSV-1:
Excerpt: “An estimated 3.7 billion people had HSV-1 infection during the same year [2016] — around 66.6% of the world’s population aged 0 to 49.”
Rates are slightly lower in the United States, about 50% of the population:
Excerpt: “During 2015–2016, prevalence of herpes simplex virus type 1 (HSV-1) was 47.8%.”
If you’ve kissed and/or had sex with two people, you’ve likely been exposed to HSV-1.
HSV-1 “Asymptomatic Viral Shedding”
If nearly 50% of people have HSV-1 (oral herpes), and you receive oral sex, you can get genital herpes. Current statistics are 50% of new genital herpes cases are caused by HSV-1 from oral sex.
Even if the person with HSV-1 doesn’t have a visible cold sore, they can have “asymptomatic viral shedding” between one and six times per month. That means a person with HSV-1 is potentially infectious up to one in every five days.
Prevalence of HSV-2
Roughly 13% of the world’s population has HSV-2:
Excerpt: “An estimated 491.5 million people were living with HSV-2 infection in 2016, equivalent to 13.2% of the world’s population aged 15 to 49 years. HSV-2 is almost exclusively sexually transmitted, causing infection in the genital or anal area (genital herpes).”
Rates are slightly lower in the United States, about 12% of the population:
Excerpt: “During 2015–2016… [the] prevalence of herpes simplex virus type 2 (HSV-2) was 11.9%.”
That’s about one in every eight people. I’ve also seen the statistic one in every six people. If you’ve had sex with six people, you’ve likely been exposed to HSV-2.
HSV-2 “Asymptomatic Viral Shedding”
Most HSV-2 infections occur when there are no visible signs of a herpes outbreak:
Excerpt: “While we think of HSV-2, the virus that most commonly causes genital herpes, as spreading through contact with herpes lesions, transmissions commonly occur when there are no visible lesions or from a partner who doesn’t even know that they are infected [asymptomatic viral shedding]. In fact, it is estimated that over 87% of people who are infected with HSV-2 never get diagnosed.”
So again, do the math:
Only about one in six to eight people have the appropriate tests and are accurately diagnosed HSV-2+.
Up to 90% of people who have HSV-2 are never diagnosed. And that’s primarily because between 75% and 90% of people with HSV-2 never have an outbreak, so they never have a compelling reason to ask for a blood test.
Furthermore, people with HSV-2 who have frequent outbreaks, eight or more a year, shed virus about one-third (31%) of the time. That’s a lot. People with less than seven outbreaks a year shed virus about one-fifth (19%) of the time.
STI Screening
The CDC discourages herpes blood tests unless you are having an active outbreak. Most medical professionals follow CDC guidelines.
Furthermore, although most sexually active people don’t realize this, a herpes blood test is not part of a routine STI screen.
Excerpt: “CDC does not recommend herpes testing for people without symptoms. This is because diagnosing genital herpes in someone without symptoms has not shown any change in their sexual behavior (e.g., wearing a condom or not having sex) nor has it stopped the virus from spreading. Also, false positive test results (test results that say you have herpes when you do not actually have the virus) are possible.”
Not only that, but the reason the CDC gives for not ordering blood tests is due to the “stigma and shame” associated with a positive genital herpes diagnosis.
Excerpt: “STD tests are usually done for infections that have serious outcomes if they are not treated. For example, finding and treating curable STDs like chlamydia can stop them from causing serious complications like infertility (the inability to get pregnant) in women. Genital herpes does not usually result in serious outcomes in healthy, non-pregnant adults. More often, the stigma and shame from a genital herpes infection can be more troubling to someone who is infected than the disease itself.”
I vehemently disagree with this approach. The federal government does not have the right to recommend I be denied a herpes blood test because I might be shamed or stigmatized by a positive result. The federal government is not responsible for managing my mental health, I am. I have a right to know I have herpes. No matter how hard it is to get that diagnosis, I have a right to know I have herpes. My body my choice!
Plus, if you know you have genital herpes, you can get on antiviral medication which lessens the severity and can even eliminate outbreaks altogether. When you know what you have, you can stop shoving Monistat up your vajayjay and get on medication that treats the actual condition. TMI? Tough!
It’s also bullshit to think an HSV-2+ diagnosis does not impact sexual behavior. If you know you have HSV-2, you can disclose prior to engaging in sexual activity. You can also take precautions that dramatically reduce the chance of transmission.
I’ve had to insist on herpes blood tests, and even when the doctor ordered them, it was most often the IgM, which showed false negatives time and time again. I estimate I’ve been battling this for a decade. How many men have I exposed to genital herpes? Well, a lot. And that’s not right. But I did not know. I was proactive, I advocated for my health and well-being, and my efforts were ineffective. Without an accurate definitive HSV-2+ diagnosis, I did nothing to alleviate my discomfort or prevent transmission.
Herpes Testing
Another major problem is the traditional test, the IgM, has about a 50% false negative rate. It detects new infections (usually within two months of initial infection). I have had many IgM’s and they have all been negative, most recently in June 2021 and then in September 2021, and I was having active outbreaks both times.
The IgG is more accurate, but it can show a false negative for new infections because it takes up to four months to detect those antibodies after initial infection. The IgG came out screaming positive for me in September 2021, and yet, the IgM came out negative at the same time — a false negative.
The fact the IgG was positive indicates I have had this infection for longer than four months. Once I got the diagnosis, I realized I’ve had it for years. I thought it was chronic yeast. I treated it with Monistat for three or so days, and it cleared up, because that is about how long I am symptomatic from a herpes outbreak. I thought the Monistat was doing the trick! Now that I have the diagnosis, I know it was herpes all along. Man, I should own the pharmaceutical company that makes Monistat.
Excerpt: “When an individual contracts herpes, the immune system responds by developing antibodies to fight the virus: IgG and IgM. Blood tests can look for and detect these antibodies — not the virus itself. IgG appears soon after infection and stays in the blood for life. IgM is actually the first antibody that appears after infection, but it may disappear thereafter. IgM tests are not recommended because of three serious problems: Many assume that if a test discovers IgM, they have recently acquired herpes. However, research shows that IgM can reappear in blood tests in up to a third of people during recurrences, while it will be negative in up to half of persons who recently acquired herpes but have culture-document first episodes. Therefore, IgM tests can lead to deceptive test results, as well as false assumptions about how and when a person actually acquired HSV. For this reason, we do not recommend using blood tests as a way to determine how long a person has had herpes. Unfortunately, most people who are diagnosed will not be able to determine how long they have had the infection [emphasis mine]. In addition, IgM tests cannot accurately distinguish between HSV-1 and HSV-2 antibodies, and thus very easily provide a false positive result for HSV-2. This is important in that most of the adult population in the U.S. already has antibodies to HSV-1, the primary cause of oral herpes. A person who only has HSV-1 may receive a false positive for HSV-2. IgM tests sometimes cross-react with other viruses in the same family, such as varicella zoster virus (VZV) which causes chickenpox or cytomegalovirus (CMV) which causes mono, meaning that positive results may be misleading. The accurate herpes blood tests detect IgG antibodies [emphasis mine]. Unlike IgM, IgG antibodies can be accurately broken down to either HSV-1 or HSV-2. The challenge here is that the time it takes for IgG antibodies to reach detectable levels can vary from person to person. For one person, it could take just a few weeks, while it could take a few months for another. So even with the accurate tests, a person could receive a false negative if the test is taken too soon after contracting the virus. For the most accurate test result, it is recommended to wait 12–16 weeks from the last possible date of exposure before getting an accurate [IgG] type-specific blood test in order to allow enough time for antibodies to reach detectable levels [emphasis mine].”
The Western Blot is the most accurate test, even more accurate than the IgG:
Excerpt: “Herpes experts agree that the herpes western blot is by far the best confirmatory antibody test. People want to obtain the western blot to get the most accurate herpes antibody testing available. Often, they wish to confirm or deny an IgG result. We know that about 50% of people who test positive with an index value (the number associated with your test result) of 1.1 to 3.5 don’t have herpes, and this test will help sort that out. Some herpes antibody tests don’t give an index value, so you may want the western blot for that reason. The Centers for Disease Control (CDC) recommends that everyone with an IgG result in this low positive range (1.1 to 3.5) obtain a western blot or another very reliable confirmatory test. Also, a research study that came out in early 2020 found that even some people with higher index values who have no symptoms have false-positive IgG tests.”
Now, throw all those statistics out the window:
You can’t trust the statistics. The CDC does not collect data on herpes infections since herpes is simply a nuisance skin condition. Unlike other STI’s, it causes no major health issues. You might feel like your life is over when you get your diagnosis, but I can assure you, herpes is not terminal!
Furthermore, with 75% to 90% of those infected never having any symptoms, most people never have a compelling reason to request a test and therefore never get diagnosed.
Excerpt: “Around 75% of Americans carry HSV 1 or HSV 2 somewhere on their body. That virus can (but may not) be transmitted to any surface of someone else’s body, via physical contact. If it does transmit, there’s an ~80% chance that they won’t recognize any symptoms from the infection. However they, too, will retain the virus for life and be contagious.”
Rates of Transmission — Good News!
Here are the estimates for rates of genital HSV-2 transmission:
When neither condoms nor suppressive therapy are used but sex is avoided during active outbreaks:
Female to male transmission rates are 4%. Male to female transmission rates are 10%.
When condoms are used, both of the rates decrease by half:
Female to male transmission rates are 2%. Male to female transmission rates are 5%.
When condoms and suppressive therapy are used, both of the rates are halved again:
Female to male transmission rates are 1%. Male to female transmission rates are 2.5%.
And here’s some more really good news!
Excerpt: “It’s incredibly rare to pass genital HSV-2 to your partners mouth through oral sex (only 1% of HSV-2 cases are oral).”
Women Bear a Much Higher Risk
Please note the incidence of infection for women is more than twice that for men. This underscores the fact that sex has a much higher risk for women than men, especially if you factor in the incidence of unplanned pregnancy.
That means, IN MY OPINION, men should NEVER insist on going “bareback”. And what the fuck is up with this “cream pie” business??? Give me a break.
To fight a woman’s request you use a condom, or to simply routinely forego using a condom, is thoughtless, disrespectful, and generally unkind all the way around. The exception is, of course, if your partner is fully informed of the risks and has given full consent to engage, or if you are in a committed monogamous relationship.
Another important thing to note. Between 50 and 70% of single women over the age of 45 have genital herpes. That would be me. The older you are, the more partners you have, the more likely it is you’re HSV-2+.
Best Advice: CONDOMS ARE YOUR FRIEND.
Do I have to tell them I have genital herpes?
Does it even occur to you to tell your potential partner you had a cold sore when you were six?
Think about your immediate answer to that question.
Then think about the fact it is estimated 75% of all people have herpes.
Then think about the fact once you have HSV-1, it’s in your body for life.
Then think about the fact you may asymptomatically shed virus up to six times per month.
Then think about the fact approximately 50% of new genital herpes infections are type HSV-1 from oral to genital contact.
Hmmmmm………………….. Are you thinking? GOOD!
Now…. are you going to start telling potential partners you have oral herpes????????????????????????????!!!!!!!!!!!!!!!!!!!!!!
There is a growing contingency of folks that don’t feel ethically obligated to tell their potential partners they have genital herpes. If that were my choice, it would be based on the statistics of transmission since the following apply to me: (1) I do not have sex during an active outbreak, (2) I am on daily suppressive anti-viral medications, and (3) I ALWAYS USE CONDOMS. With all three of those criteria in place, the risk of me transmitting genital herpes to a man is 1%. You read it in the section above. And I’ve said it again right here. The risk of me transmitting genital herpes to a man is 1%.
I haven’t made a firm decision on whether or not it is an ethical imperative people disclose, although the fact I have a blog with an entire section devoted to “Living With HSV-2” makes it so I kinda hafta disclose before potential partners find out for themselves. It would be uncool if they wanted to have sex and they found out I had herpes by reading my blog, and it would be potentially criminal (kid you not, Google up) for them to find out after we had sex.
After all my Googling, I believe the legal implications of not disclosing are horribly skewed with the clear intention of terrifying you! In my opinion, that is due to the fact such legal implications fall solidly in line with our society’s ridiculous adherence to the notion that herpes is a horrible monster of a disease.
Furthermore, the statistics don’t bear out being able to definitively prove who you got herpes from if you’ve had more than a handful of partners (more about that in the next section). And unless you can present compelling evidence of clear intent to harm, medical records are highly protected. That doesn’t mean they can’t be subpoenaed, but you’d have to present compelling evidence of clear intent to harm, compelling enough the judge agreed. Remember, our justice system has this “innocent until proven guilty” thing. The risks of legal ramifications for non-disclosure are low, but there are risks. There are risks to every choice you make.
I honestly can’t tell you if I’d disclose or not if I wasn’t so open, if I didn’t actively encourage engaging in transparent dialogue about genital herpes and mental illness to reduce the stigma, and if I wasn’t public with my diagnosis. But that’s moot, because the way I choose to live my life doesn’t give me the option not to disclose.
Best Advice: Study up, get educated, ask your friends, read what folks are saying in the support groups, and MAKE THE DECISION THAT IS BEST AND RIGHT FOR YOU.
Who gave me herpes?
It’s important not to jump to conclusions when you receive a positive diagnosis! I’m in a lot of support groups, and both men and women are very angry at the person they think infected them. However, if you’ve had sex with two people, chances are you’ve been exposed to HSV-1 and if you’ve had sex with six people, chances are you’ve been exposed to HSV-2.
Excerpt: “You might ask a prospective sex partner whether they’ve had STIs (like herpes) before you have sex. (We highly recommend doing this!) Maybe one of your partners has even told you they had genital herpes. But people who actually know they have herpes are just the tip of the iceberg of everyone who has the virus. In fact, of the 50 million men and women estimated to have genital herpes in the United States, over 80% are not aware they have it. That means if you are dealing with a new herpes diagnosis, you may not have any idea where it came from. This doesn’t mean one of your partners is lying to you; most people just don’t realize that they were ever infected. So even if your inner detective wants to hunt down the partner who gave you herpes, if you’ve had more than 1 or 2 partners, chances are you just won’t be able to be 100% sure. Regardless of whether or not you find the source, it’s important for you to tell your partners about it so they can get tested and protect themselves.”
I jumped to all kinds of conclusions about how I got herpes when I received my diagnosis. And I was DEAD WRONG! I lost a great friend over it. So — NO SUDDEN MOVES! Read about what I learned not to do at Welcome to Club H!
You may likely never know who you got herpes from. And really, does it matter? I estimate I’ve had genital herpes for ten years, possibly longer, without knowing. I have exposed a pretty significant number of men. (I’ve had a pretty great run the last few years!) I would have handled things very differently had I known, but I simply did not know. If I gave a man herpes, is it fair for him to hold that against me? I don’t hold it against whomever infected me, because up to 90% of people don’t even know they have it.
Best Advice: LET IT GO.
How can I make sure I never get herpes?
You can’t.
I suggest you ask before engaging in any sexual behavior. However, your partner is very likely to loudly proclaim, “I don’t have herpes! I’ve been tested!” WHICH MEANS ABSOLUTELY NOTHING.
Also, in my experience, men often get really offended and even angry if you ask. I’ve been accused of thinking they’re “dirty” (which is ludicrous because herpes has nothing to do with hygiene) or that I’m an evil untrusting cynical bitch. (To which there is some truth, but it has nothing to do with asking about STIs.)
You may think you’re being really sly by insisting you like the lights on during sex so you can surreptitiously perform a visual inspection. But even if you see nothing, which is the most likely scenario, you may proceed with a completely false sense of security due to asymptomatic viral shedding.
Best Advice: Be smart, be prudent, but goodness gracious — LIVE YOUR LIFE!
Let’s get rid of the stigma!
Ella Dawson is my herpes superhero! She made a YouTube video that went viral titled STIs aren’t a consequence. They’re inevitable.
Best Advice: Watch it.
Stop making jokes about genital herpes. And if you have it, and you are able to be open about it, be open about it. Just like with mental illness, if everyone maintains genital herpes is a shameful secret, attitudes will not change.
I say that, because I feel very strongly about being transparent about my genital herpes as well as my bipolar mental illness. I am also no longer in the business world, so in terms of societal shunning, I don’t really give a fuck. The stakes are very low for me. That being said, I encourage you to always do what is best and right for you.
“I never could see anything wrong in sensationalism; and I am sure our society is suffering more from secrecy than from flamboyant revelations.” -G.K. Chesterton
Want to talk?
If you want to know more, if you want to talk about your genital herpes diagnosis, or if you simply want more information, email me: cocodensmore@outlook.com. I have plenty of opinions and plenty of information, I’m a good listener, and I can absolutely help you understand herpes is not a moral failing!
Links:
https://www.herpesopportunity.com/post/rates-of-herpes-transmission https://www.cdc.gov/nchs/products/databriefs/db304.htm https://www.who.int/news/item/01-05-2020-massive-proportion-world-population-living-with-herpes-infection https://www.webmd.com/genital-herpes/news/20110412/genital-herpes-silent-spread https://pubmed.ncbi.nlm.nih.gov/17703961/ https://ro.co/health-guide/how-many-americans-have-herpes/ https://medium.com/@ellenbeale/i-have-herpes-and-i-dont-think-i-need-to-tell-people-1ca71ac7c0e https://www.goodrx.com/conditions/herpes/my-partner-has-herpes-prevent-transmission https://www.forhims.com/blog/is-asymptomatic-herpes-a-thing https://www.youtube.com/watch?v=SdQJB1C2aug https://www.cdc.gov/std/herpes/screening.htm http://projectaccept.org/straight-dope-herpes-statistics/ https://www.herpesopportunity.com/post/rates-of-herpes-transmission https://www.webmd.com/genital-herpes/news/20110412/genital-herpes-silent-spread https://westoverheights.com/getting-a-herpes-western-blot/ https://pubmed.ncbi.nlm.nih.gov/31395403/ https://www.bedsider.org/features/869-gone-viral-6-things-you-should-know-about-herpes https://investors.modernatx.com/news/news-details/2022/Moderna-Expands-Its-mRNA-Pipeline-with-Three-New-Development-Programs/default.asp (added 2/21/2022) https://www.forhims.com/blog/can-you-be-immune-to-herpes (added 9/12/2022) https://www.uptodate.com/contents/genital-herpes-beyond-the-basics/print#:~:text=One%20study%20examined%20rates%20of,when%20there%20were%20no%20symptoms. (added 9/27/2022) Herpes Transmission Rates: Female to Male and Other Statistics (justherpes.com) (added 11/4/2022) Herpes Statistics: You'd Be Surprised How Common Genital Herpes is. (justherpes.com) (added 11/5/2022) Even Without Symptoms, Genital Herpes Can Spread: NPR (added 11/5/2022)
Yes, these are my actual herpes test results:
