ASHA Survey Shows Many Herpes Patients Diagnosed Incorrectly

Think you can tell that a rash or sore is a genital herpes infection just by looking at it? If you said “no,” you’re right. You can’t. And neither can your health care provider. And yet in an ASHA survey of 369 people diagnosed with genital herpes by a health care provider, more than 26% said they were diagnosed with a visual exam alone.

While experienced health care providers may recognize the classic symptoms of a genital herpes infection, they also understand that there are other conditions that can be mistaken for herpes, and that they can’t make a definitive diagnosis with just a look. Even if the infection is herpes, a visual exam alone can’t determine herpes type—and that matters.

Why does virus type matter?

There are two types of herpes simplex virus (HSV) that can cause a genital infection: HSV-1 and HSV-2. While most genital herpes is caused by HSV-2, an increasing number of new genital herpes cases are caused by HSV-1. Knowing the virus type is important in understanding what to expect and determining treatment options.

For example, those with genital herpes caused by HSV-1 have far fewer outbreaks than those with genital herpes caused by HSV-2. In fact, many people never have another recurrence of genital HSV-1 after the initial outbreak. For those who have genital herpes is caused by HSV-2, recurrences are more frequent, so more of those with HSV-2 than HSV-1 benefit from suppressive therapy. Appropriate type-specific tests can help a patient better understand what to expect—you can read more about herpes testing here.

It’s clear that knowing the virus type is important, but 30% of respondents in our survey were either not told, or not sure if they were told, the herpes type they were diagnosed with. About a quarter of those who were retested (25.32%) did so because they were not originally told the virus type.

Understanding the Diagnosis

In answers to the open-ended survey question “How would you describe your response to your diagnosis,” the words used most often in responses were (in order): shocked, depressed, devastated, and sad. Also frequently mentioned was the word “confused,” and with good reason. A diagnosis can be difficult and confusing, but

The vast majority of respondents to our survey (80.34%) received no counseling after their diagnosis, and 34.78% of those who were counseled after their diagnosis were not satisfied with the counseling they received. Most of these patients turned to the web for more information, from sites like ASHA.

A Conversation with Terri Warren about Genital Herpes Diagnosis

Terri Warren, ANP—nurse, author, and owner of Westover Heights Clinic in Portland, Oregon that specializes in the genital herpes infection—offers her insights and expertise about genital herpes diagnosis in a two-part conversation on ASHA’s Sex+Health podcast. In part one, Warren explains the tests that can provide an accurate genital herpes diagnosis and how they work and clarifies that a physical exam alone should never be the final diagnosis for anyone, for many reasons. In part two, she discusses the importance of knowing herpes type and offers helpful insight into how to put a herpes infection into proper perspective.