My year with genital herpes

I went to the post office like any other day. It was a little startling to see an envelope addressed to me in my own handwriting until I remembered going to the doctor a few weeks before. I had gone to my first visit to a new doctor, and they had taken blood and urine samples for testing. I had been given an envelope to address for mailing my results to me. I had no expectation of anything negative showing up.

Of course, as you can tell from the title of the post, the envelope held bad news. I was positive for both type one and type two herpes. I had never had any symptoms. As I waited for my husband to come home, I started researching the disease over the internet, trying to understand what had happened.

I verified that it was possible for me to have the disease and yet no symptoms. Not only that but it’s very common so the person who infected me might have had no symptoms either. According to several sources, about 50 to 80 percent of American adults have type one herpes, which is usually oral. It is often transmitted in childhood in nonsexual contact with an adult. One in five people have HSV-2, which usually presents in the genitals. My chances as a sexually active woman are even higher (one in four) than if I had a penis. It is sexually transmitted.

I began the humiliating process of calling my lovers to tell them the news and suggest that they get tested. I was actively involved with the two of the people on that list, and they both agreed to get tested right away. The third person I had had sex with was no longer a part of my life, but the number I had for him still worked. He said he would not be able to do so right away but would get to it in a few months.

I went back to the doctor to discuss my diagnosis. She explained much of what my research had told me. She told me that, since I had no symptoms and assuming my husband would test positive, there wasn’t anything I needed to do. I disagreed. I asked to be put on Valtrex, which would lessen my chances of passing the disease on to anyone else. After three years of unprotected sex with my husband, we began using condoms.

My insurance would not cover a second test. I asked what type of test they had given me, but neither the doctor nor the technician could tell me beyond that it was a test for IgG antibodies. As opposed to earlier, less reliable tests for IgM antibodies. I had hoped to take a different test, but I do not know if the second test was the same as the first. It was cheaper to use an online service than my doctor’s office. The second test was the ELISA test.

My husband and lover both tested negative for HSV-2. My results for the second test were the same as the first. I called my ex-boyfriend and encouraged him to get tested, going as far to tell him that since both of my other lovers tested negative, it meant he most likely was not. He felt that, since he was in a monogamous relationship, it was not urgent that he get tested. My husband and lover were tested again about six months after their first tests with the same results.

What followed was a pretty stressful time. My husband hating using condoms, and my lover and I agreed not to have intercourse. I scrutinized every sensation related to my vulva. Was that sensation the elastic of my underwear or something under my skin that I couldn’t see, crawling up my nerves, shedding infectious skin cells on people I loved? I couldn’t see any sores. I was healthy on the surface, but something in my blood made that a lie.

I even felt guilty for being so distressed. It’s not like I had cancer or anything else that threatened my life or even hindered it except for the blue pill I took every night. I bet someone in constant pain or difficulty breathing would trade me diagnoses in a second.

I kept telling myself that I was the same person I was before the test results, but I didn’t feel the same.

Then several months later, I got a call from my ex-boyfriend. He had tested negative. I was glad that he wasn’t infected but I was very confused. All the people I had ever had sex with were negative for this sexually transmitted disease. It didn’t make sense.

I called the national hotline for herpes. The woman on the phone told me that the situation I described was impossible. Someone must have gotten tested for IgM anti-bodies instead of IgG. She implied that someone was lying to me. When I asked if I could have been infected at birth, she scornfully told me, “You would know if that happened.”

I got off the phone hurt and distressed. I simply didn’t believe that any of the men I had trusted with my body would lie to me. I confirmed with each about the type of anti-bodies tested. I began to research more on-line. Eventually, I found an article about the Western blot test used as confirmatory test in cases of women with a low positive HSV-2 score on ELISA tests. In this research project, 30% of women with a low positive result with ELISA were found to be negative by Western Blot. I had to research even more to learn what exactly a “low positive” was and to check the results from over six months earlier to see that I did qualify.

Having been frustrated by my general practice doctor not understanding why I would want to use Valtrex, I talked to my gynecologist about getting the Western Blot. It is only performed at the University of Washington, but it is considered the gold standard of herpes testing. My doctor knew of the test as a confirmatory tool, but she wasn’t sure how to order it. I printed out the information off of the University of Washington website and faxed it to her.

This is getting long, so I won’t go too far into the comedy of errors that was trying to get my blood to Seattle. UW wouldn’t pay, even though I was paying the full cost of the test out of my pocket or allow me to reimburse them for shipping the package. My doctor wouldn’t either. Only some Fed Ex locations ship biological material and even after calling first the second time, I managed to visit two places that did not. The high point found me in tears in my office at work announcing to my supervisor that that there was a box with a vial of my blood in the crisper of the refrigerator of our break room.

Two blood draws and a few hundred dollars later, three human scientists independently verified that I was negative for HSV-2. I am very relieved and angry at the barriers I had faced to get to that point. I believed for almost exactly a year that I had genital herpes. I found new ways to be sexual in that time. I dealt with the feeling of being “damaged goods.” I had to tell old lovers and new ones that I was a risk to their health. I had to decide whether I was willing to take the chance of infecting someone I cared about with an incurable disease every time I approached intimacy with another person. I looked down the long road of an entire lifetime of doing all of this. I learned to celebrate and enjoy my sexuality despite it all. All of that will make me a better priestess when someone else who is diagnosed with this very common disease comes to me for comfort and understanding.