Why Is It So Hard to Get Tested For Herpes Now?

Maybe you haven't noticed, but lately it's been a literal fight to get tested for herpes. You go in to a doctor and say you want to get the full panel of tests for STI's and let them work their magic. Then you get your results and realize that herpes (HSV 1&2) isn't on your panel. You call back and ask why, and they give you all sorts of answers. Here's why they no longer routinely test for herpes, why it's so difficult to get the test, and how to actually get the test. As a bonus, I add why herpes shouldn't be that big of a deal for you even if you have it.

Sexual health and safety are a priority of mine as someone who works in the sexuality field, and someone who has sex with multiple people (yes sometimes at once). My partner and I both have sex with people outside of our relationship. And yes, we both tell each other all about our fun. So, we get tested regularly.

But we realized within the last couple years that they weren't testing herpes. There are some sensical reasons why they stopped testing. First, the most effective test is a swab test on an open sore. But there seem to be a lot of asymptomatic herpes infections. This means the person never gets a sore. So, the next type of test they do is a basic antibody test. For this they need a blood sample. However, this is where things go off the rails.

This test isn't very high quality, and gives a lot of false positives. And with such a highly stigmatized infection with no cure, this has real world impacts. It could also give many false negatives in the sense that even if you're infected, this test relies on detecting antibodies in your system which could take 12-16 weeks for form. So, even though you are positive, if you're tested too soon it could read as negative. This, I believe, is why herpes tends to be such a mystery in people's lives. Many people don't know exactly where they go it.

I have actually falsely tested positive for herpes twice! Once when I was about 27, and the other just a year ago. My partner has also falsely tested positive, too. How do we know it was false? There's actually a much higher quality test available called the Western Blot test. This one is very accurate when you wait the required 12-16 weeks. If you have never had an active infection and didn't get a second test to confirm, then I highly recommend you go get the Western Blot to confirm. I imagine there are actually a LOT of people out there who think they have asymptomatic herpes but just got a false positive.

Knowing all this, the Centers for Disease Control and World Health Organization both now stopped recommending routine herpes testing with no symptoms. But what if I actually want to know if I or the person I'm planning on fucking has herpes? You can get the test with a high knowledge on it's limitations and still get useful data.

Here's how the conversation usually goes.

"I would like the full panel of STI's plus herpes" I say.

"Oh, we don't recommend herpes anymore" they retort.

"I understand, we've talked about this before, I know the limitations and would still like to get tested."

"We really don't like to test unless there's an active infection."

"I know, I would still like to get tested, we went through this the last time I was here, and I know all the risks, and I would like to get tested for it today."

"I guess if you insist."

"Can you add this to my file that I understand the risks and will still want to be tested every time so we don't have to go through all this?"

"No."

I wait until they take all the blood and are complete.

"Can I see the screen to ensure that herpes was included?" I ask.

"Geeze, you're really insistent, I'll add it."

"Were you really not going to add it after all that I just said?"

"Yeah, we really aren't supposed to be adding this one."

Every single time I go in this is the game we have to play. Sometimes I think they remember me and don't put up as much of a fight, but oftentimes it's a new person and we have to go through this whole thing every time. Here's the thing, if someone isn't highly informed then it may be safer for them to not get tested if they aren't that knowledgeable about the whole process. Because again, this test has real world impacts. People have killed themselves after a positive test, which is such a shame, because herpes is actually a very low risk virus living in your body. It can't kill you.

But people really struggle with this diagnosis. And when the risks are higher to someone's mental health than they are to someone's physical health, then I can see why the big overseeing health bodies would want to minimize those impacts. Herpes is not life threatening. It's like a rash on your mouth or genitals. Some people will only get one outbreak in their entire lives. And some will get outbreaks a couple times a year. If you get outbreaks, then it's contagious during the outbreak, which includes the very first twinge of a feeling of the outbreak all the way up until 2 weeks after the sores disappear. There is also a probability of asymptomatic spread, where no sores form but it is contagious. It's manageable, but highly stigmatized. And now they aren't testing for it unless you are really insistent or have an outbreak.

So, it will spread. I think it's going to be really difficult to track who has it and who doesn't from now on. Usually when I ask to see someone's tests they don't have herpes on it, and they're surprised to see that. They thought they asked for the full panel, and don't understand that this one isn't on there anymore. So, I think it's important to spread this information, because it seems the CDC and WHO aren't spending much time sharing this.

The thing is that it's possible to be safer having sex with someone with herpes. It's not an automatic no for me. But I want to know if they have it because that changes what I ask and maybe how we proceed. It just takes a few more questions about their knowledge of it and practices to make me feel safer. And to be honest, sometimes it will be a no for me if I don't have enough information. But I definitely won't treat the person as less than or unworthy. It's a viral infection that is spread through tiny lesions in the skin from direct skin-to-skin or skin-to-body fluid contact with an infection.

Technically, you can get a herpes infection anywhere on your body, but it's not common at all. The virus needs a tiny cut in your skin to enter the body, and the skin of the genitals and the mouth are much thinner, so they get cuts or scrapes more easily, especially during intercourse, anal, or oral sex. There are antiviral medications that are available that can help reduce the risk of transmission, but none have completely eliminated the risk, especially of asymptomatic spread.

So, why haven't we figured this one out yet and created a vaccine that would create the antibodies needed to fight the infection from the start? Well, money is the short answer. This just isn't important enough nor is there a high value for creating a cure or a vaccine. Pharmacologic companies only go where there would be a high value return, and this is a non-threatening infection. Until the money is there, I don't know if we will ever figure this one out. And it's not for lack of trying yet either.

There have been many studies done, but herpes is seen as one of the most successful viruses of all time. It doesn't kill or even really harm the host, and when it goes dormant it hides in the nerves, which is out of reach of the immune system. It's almost perfectly designed to live in harmony (in its perspective) with humans. Very few other viruses have done what herpes has done and infected (at last count) 2/3rds of the planet with HSV 1. Outright, that's weirdly impressive. Plus, one of the sneakiest evolutions of herpes is through asymptomatic spread. This, I believe, is why it is so widespread.

And now that they aren't testing regularly for it, expect this number to keep rising. But you can still get tested, you just have to be persistent with your doctor and make sure they add it to your panel. They can't deny you getting it if you keep asking. And remember if you do get a positive result from the antibody test, always go back and confirm it with the Western Blot. This should be standard medical procedure, but the last time I falsely tested positive it was another fight to get the second test. Unfortunately, you have to be firm with the medical system and the best way to traverse it is through knowledge. That's why I decided to write this blog.

And if you are one of the literal billions of people who does have herpes, you are not alone and you deserve love and care as much as anyone. Always be honest and upfront about your status and start to be aware of what it feels like for an infection to come on. You become contagious as soon as the first sensation of an infection arises. If you get frequent outbreaks you will start to notice this sensation. Then you continue to be contagious for 2 weeks after the sore heals. There are antivirals you can take, and some are shown to reduce asymptomatic spread by 50%.

Remember that herpes has adapted perfectly to humanity. It's not anyone's fault that this virus is so advanced. And it's not deadly. The biggest risks with herpes infection are mental health concerns. It's ok to seek out help so that you can learn to live in harmony with yourself. And don't fall for quick fixes or money grabbing schemes that "cure" herpes. There are absolutely some natural remedies that can help support your immune system so that when the virus starts to emerge from your nerves and create an outbreak that you may be able to fight it faster.

But anyone who says they tested positive then did something and tested negative, likely just had a false positive the first time. They are so extremely common that there is a lot of misinformation out there. There is no cure because the virus lives dormant in your nerves. There may be treatments or energetic practices that reduce outbreaks or make it go dormant for long periods of time. But I caution that there are many snake oils out there praying on people's desperate hopes of getting rid of the virus. I've heard stories of people spending thousands on holistic treatments to find out that they don't work.

But now you have a lot of information on herpes and how to live in a world where it is highly common. For some people the easiest thing to do is to give up worrying, stop testing, and accept it if you get it. For others it's gaining knowledge and taking steps to stay safer. Any of these paths are perfect for you. Only you get to decide what's best for you and your body.

INSPIRED ACTION: Are you living in fear of contracting STI's? For the most part, STI's are not going to kill you. In some cases, like HIV, they can but testing for HIV has made huge strides. There are ways to have sex with other's and stay safer. But there is no way to completely mitigate the risk of STI's except to not have sex ever again. However, sex can be an amazing and beautiful way of connecting to others. It can create such joy, if you aren't paralyzed by fear. It's easy for purity culture to prey on your fears here, but knowledge is power! Take back your power and pleasure and make the choices that feed your life not your fears.