Many people diagnosed with herpes feel betrayed by the medical system when they learn they had never previously been tested for herpes and their partner likely was not either. If you didn't know before now, herpes is generally not included in a standard STD panel. That means all those screens that you so diligently obtained since becoming sexually active and the one you may have asked your partner to get as well, probably did not include herpes.
Major medical associations regularly publish guidelines for how doctors should practice. When it comes to STD screening, the general consensus and recommendation is to not test individuals for herpes unless they have symptoms.
Most people with herpes have no idea they’re infected. While some people have classic symptoms easily identified as herpes, most people have no recognizable signs or no indications that concern them enough to head to the doctor.
Nonetheless, asymptomatic individuals can still pass herpes on, and you could be one of them, even if you obtain regular STD testing.
Many doctors also don't inform patients that the test is not included, so when people do have symptoms and receive a diagnosis, there can be feelings of confusion and worry about whether a partner was dishonest or cheated, when their partner simply may not have known about the infection. In fact, by the time some people are diagnosed, it can be very difficult to determine how long they've had the infection. This means they may not have contracted it from their current partner.
So why is this test not included? Doesn’t the medical community care about preventing transmission?
Although it may not feel this way, the doctors and researchers who established these guidelines have been quite thoughtful about them. If you read the documents, you can see that the researchers sensitively consider their decision from many different angles. In fact, you can learn a ton about the research on genital herpes and transmission by reading the U.S. Preventive Service Task Force documents where they discuss the reasoning for their decision.
The biggest contributing factor to the guidelines is that 1) standard herpes blood tests are not totally reliable and 2) receiving a herpes diagnosis can have a significant impact on mental health while being virtually non-threatening to your physical health.
The blood tests do have a lot of value, but here are the biggest issues:
About 50% of the population has type 1 herpes. Type 1 can be genital or oral. If you have never had symptoms (no cold sores or genital symptoms) and obtain an IgG based type-specific blood test (the standard test for herpes simplex), and the test comes back positive for type 1, we have no way of knowing whether you are infected orally, genitally, or both. The only way we can know which location is infected is by symptoms. (Type 2 is almost always a genital infection.)
About 30% of negative results for HSV 1 are false negatives. This means if you test negative, you might still have HSV 1. (There is about an 8% chance of false negative with HSV 2.)
If you are positive for type 2 and fall within a positive range of 1.1 - 3.5, there’s a decent chance this is a false positive. About 50% of positives that fall in this range are in error, with the closer you get to 3.5 the more likely you are positive and the closer to 1.1 the less likely you are positive. There can be false positives above 3.5 as well but they’re less likely. If you do test positive within this low range, the CDC recommends confirmatory testing. The most accurate confirmatory blood test is the Western Blot. The Western Blot is more complicated to obtain (though not impossible) and your insurance may not cover it. In addition, many doctors do not know about the high false positive rate within this range so they incorrectly diagnose their patients without getting confirmation. I have worked with a number of patients diagnosed within this range who I encouraged to follow up with the Western Blot and they discovered they were negative. (You should not do confirmatory testing with the same blood test that gave you the positive result; and to be confident in your results, you should wait 16 weeks from the last possible exposure to be tested.)
Blood tests given too early after possible exposure can be false negative.
What about mental health?
We also know that due to the stigma, learning that you are positive for herpes can impact your mental health. Research shows that people diagnosed with herpes are more likely to become depressed, withdraw socially, and experience reduced self-esteem. The shame associated with contracting herpes can make a big impact on a person’s quality of life. This is despite the fact that it’s a common virus that affects people of all walks of life, all social circles, and all socioeconomic classes. It not only affects people who have casual sex partners (as is often assumed) but also people who limit their sexual behavior to monogamous relationships. It can even affect people who have only had one partner.
I can almost guarantee you know multiple people who have genital herpes even if no one has ever told you. Also, many cases of genital herpes occur as a result of oral sex from someone who has a history of cold sores (there is no need for a cold sore to be present at the time of oral sex because herpes, which causes cold sores, can shed virus when no symptoms are seen or felt).
Medical experts pretty much agree that from a physical health perspective, outside of the rare case, herpes is by and large no big deal. Most other STDs (gonorrhea, chlamydia, syphilis, HIV, and some strains of HPV) can have a significant impact on your health if left untreated. This is not the case with herpes. If you have no symptoms but test positive for herpes, there is nothing to do differently when it comes to your personal health. So the experts who publish these guidelines feel that the risks of knowing you have herpes based on tests that might not be accurate and still leave a lot of questions will have a potentially worse impact on your mental health than it’s worth.
And perhaps they are right, however...
Research suggests that the psychological impact on people who are asymptomatic but test positive tends to get better with time. If asymptomatic people were informed of their infection, maybe they would do something to reduce the risk of transmitting the virus. In fact, one study showed that people aware of having HSV-2 were 50% less likely to transmit the infection in new relationships than people who are unaware of their infection.
As a mental health provider who sees the impact on people who contract symptomatic herpes from partners who didn't know they were infected, I think we as healthcare providers owe these individuals a bit more.
The few patients with knowledge of their infection shouldn't have to bear the full burden of herpes stigma while most people with herpes are able to go on with their lives, transmitting unknowingly.
My call is for more informative conversation about herpes between practitioners and patients who are seeking sexual health services.
At the very least, I believe providers should inform patients if herpes is not included in their test. Providers should take this opportunity to educate patients on how common herpes is, dispel some myths, inform them that most providers don’t test and therefore the patient and their partners are unlikely to know if they have herpes unless they exhibit symptoms.
I also believe patients should be offered the test if they desire it. The decision should be one patients are actively involved in with their doctor. In fact, the CDC actually recommends that herpes testing be included when patients ask for a complete STD exam, especially if they have had multiple partners.
STDs are a public health concern, so STD testing should come with education, which hopefully will help reduce stigma. If we all heard about herpes every time we were tested for STDs (regardless of whether we are tested for herpes), learning that we could have the virus and not know it, that genital herpes can be contracted via oral sex by someone with oral herpes even when no symptoms are present, that all types of people have herpes and contracting it doesn't mean you're "dirty"--then this might do a lot for reducing the mental health impact for people who do receive a diagnosis.
I can't say that everyone should be tested. But I can say that patients should be informed about what is not included in their test, especially since they are likely to assume herpes will be a part of it. Doctors (or their nurses) should take the opportunity to inform patients and reduce stigma, hopefully mitigating some of the mental health impact should a patient be diagnosed in the future or learn that someone they care about has herpes.
A few notes and resources:
**If you have tested low positive for herpes (between 1.1 and 3.5) via a herpes IgG blood test and want information about obtaining confirmatory testing via the Western Blot, you can find that information at The University of Washington's website or contact Terri Warren, NP who is an expert in herpes and can help guide you through the process of obtaining the Western Blot and interpreting your results. If you've had a positive swab for herpes from a genital lesion, this can act as confirmation.
**People with herpes simplex who have a partner with the same type of herpes simplex are very unlikely to "re-infect" or transmit herpes to their partner since their partner already has antibodies for the same virus. For instance if both partners have HSV-1 (even if one has it orally and the other genitally). Check out The Updated Herpes Handbook or The Good New About The Bad News for a thorough discussion on transmission.
**Pregnant women who are negative for herpes simplex should avoid activities that could put them at risk for contracting genital herpes during the 3rd trimester, as becoming infected at this time carries the highest risk for neonatal herpes.
**Women who have a genital herpes diagnosis prior to becoming pregnant are at a very low risk for transmitting to their infants during birth, however it's still important to inform your doctor as you will likely be prescribed antivirals at the end of your pregnancy to reduce the chances of an outbreak at delivery. Most women in this situation are able to give birth vaginally and do not need a cesarean section.
My hope is to keep you informed, but this is a blog post and not meant to be exhaustive. I am not a medical doctor and it’s possible information written here does not apply to your unique circumstances. Also, I do my best to stay up-to-date on the best information regarding herpes, however, a blog post can become out-of-date without my realizing it, so I always encourage patients to do their own research. Information on this website is not intended to substitute professional medical or psychotherapeutic advice.
About Melissa King, LMHC
I am a licensed mental health counselor in New York City with a psychotherapy office in the neighborhood of Murray Hill in Manhattan. Find out more about me here. I'd love to hear from you. Email me if there's a topic you'd like to read about on this blog.
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