It all started with a misdiagnosis

It all started with a misdiagnosis

I was STD paneled… again… for everything! But when the tests came back positive for HSV-2 my world came crashing in.

How was I supposed to go on with my life?

It was the end of the year and I had met my high deductible with my insurance earlier so when I scheduled my appointment with the OB/GYN. So, another STI panel would be a bargain. But I hadn’t bargained on being diagnosed with a lifelong STD.

Heck, I didn’t even know what HSV-2 was! Well, at least by its clinical name.

I did have reason for concern, given the circumstances of my divorce. That’s why I had already been paneled at least three times. And was overjoyed to find that I had tested clean every time. This time was different.

Denial

I was told that I had herpes – the genital kind, not the cold sore kind. But why did I never experience any symptoms or even an outbreak?

Anger

I didn’t deserve to have herpes. I wasn’t the cheater!

Bargaining

I had a diagnosis and I was in shock. But how could it be true? I was in tears. I knew this diagnosis was not life-threatening but I knew it would be life-changing.

Depression

I felt ashamed. How was I supposed to live with it? How was I supposed to deal with this if I was ever to be in another relationship? It wasn’t fair!!!

Acceptance

I had no idea what to even ask my doctor, but I made it my mission to do some research. I had some phone calls to make. And I had to keep moving forward.

Here’s what I learned.

Did you know that STI panels don’t routinely screen for genital herpes? Why? First, because testing is only recommended when a patient has experienced symptoms. Secondly, routine testing would not necessarily spread the disease. Thirdly, while herpes may be a life-long disease, it’s not life threatening. In fact, here’s what the Centers for Disease Control (CDC) has to say, “More often, the stigma and shame from a genital herpes infection can be more troubling to someone who is infected than the disease itself.” Let’s just say, I could relate!

→ HSV-2 is common but not openly talked about.

Here’s another fact from the CDC: more than one out of every six people aged 14 to 49 years have genital herpes. But most people don’t even know they have it. So, I could have gone years – perhaps even a lifetime – without ever being diagnosed!

→ I started talking.

Even though it was awkward, I talked about it – first, online behind a screen name, then with a few friends and family members who were willing to talk about it and all of its implications. Interestingly I found a remarkable amount of helpful information, resources and support from a reddit.com group. That’s where I learned about my test results and options for testing. I found out that my index levels were extremely low and could possibly indicate a false positive. It was suggested that I ask for another test, a more definitive test. I even began to feel like maybe HSV-2 wasn’t so awful. So many people were living their lives and involved in great relationships. After all, it would have a way of weeding out potential suitors who weren’t interested in a serious relationship. The support I found was truly amazing.

→ I got re-tested.

Equipped with this knowledge from my new-found online community, I went to my OB/GYN follow-up appointment with all of the right questions. In fact, the staff asked me if I was a Med Tech. It was then that I began to think about finding sharing my story.

→ I found hope before I discovered a misdiagnosis.

Eventually, I came to a healthier place of acceptance. The HSV-2 scare was one a several diagnoses that affected my reproductive health but to the CDC’s point, it was facing the stigma that forced me to take a long, hard look at what so many people face. I’ve learned that it’s difficult to cast blame when it comes to HSV-2. That’s some tough learning when I had some heavy stones I was prepared to cast. But I was not alone. The group taught me that taking responsibility for my disease would become a way of life. That became a comfort and a strength to me. And even though I came clean with a second test, I learned an important lesson in forgiveness and letting go. Because it was just as possible that I could have contracted the disease in my college days as it was from an unfaithful husband. And that’s where my story begins.

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Mantra

TOV is a non-profit media and news site for women being well. If it concerns women's health, it concerns us. We believe that women should feel proud of all of the ways their bodies are unique; we believe finding credible information you need to support your health shouldn't be difficult; we believe discussing the issues that affect your health shouldn't be taboo; and we believe in supporting our less fortunate sisters. Make peace with your lady parts.

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