MY MISSION IS TO SHARE MY STORY 

By Michele (Part I)

My experience begins in the usual way. Although screening guidelines today seem to be in constant flux, I represent generations of women who have followed the routine of the annual Pap smear. In 2008, when I was 33, it was time again to take the annual pilgrimage to the gynaecologist. My husband and I decided it was time to try for a baby, and I wanted a doctor I could build a relationship with. A friend loved her doctor, so I made an appointment with her to also do an STD screening Test, specifically an HPV test.

After a run-through of my and my husband’s sexual and general health history, which was far from exciting, my new doctor advised co-testing just to be safe. This is where it got interesting and educational for me. She asked what I knew about HPV. Sadly, all I could tell her was that it was an STD and there was a vaccine for it. But I knew I was too old for it. I had never even heard of co-testing, specifically the HPV DNA Positive test. Besides, I was in my 30s and a loving, monogamous marriage.

The Daughter of a Doctor

I naively thought STDs are what young, single women in their 20s worry about. Since I entered my 20s as a virgin and came out with just a handful of sexual partners and a glowing, spotless Pap history, I was feeling pretty confident I had no concern for an STD. I was someone who had never missed a Pap test or an STD test, a graduate student at an IV League university, getting my doctoral degree in health education for HPV home testing, and had always eaten well, been active and knew the dos and don’ts of good health very well. But there I was, learning about an STD and subsequent cancer risk I had to be concerned about.

Although the doctor applauded me for my due diligence in getting my annual Pap, she also pointed out that it wasn’t all I could do to protect myself. I, of course, eagerly agreed to co-testing, and I am so grateful to her every day for suggesting and encouraging this. Waiting a week for the results was a walk in the park. When my doctor called, she told me my Pap was normal. I congratulated myself. With so many normal Paps under my belt, I always felt like I was winning some race, beating some record. But then that feeling quickly went up in smoke. She also told me I was positive for high-risk strains of HPV. I was stunned.

My Mind Raced

How could this be? My Paps have always been good. Wouldn’t I know if I was carrying around something as dangerous as high-risk HPV? And my husband? All I could think of was how much I loved him and how awful I’d feel if I infected him. My doctor said I should tell my husband, and she told me that women don’t always share their HPV status because of the stigma. I was sure my husband would be supportive, but this was also the first time we’d had to deal with something like this and to be honest, I thought it would be awkward.

When I told my husband about my HPV test, his first words were, “I feel so badly. What if I gave this to you?” His second thoughts were, “Isn’t there a vaccine we can get?” He also asked, “How do I get tested so we can treat it and get it out of our lives?” At the time, the vaccine was not approved for men, and even if it had been, he would’ve been too old for it.

And this is when we learned that there is no screening for asymptomatic men.

This led to us spending many hours learning all we could–that approximately 79 million people are infected with HPV at any given time, that it’s easily transmitted, and that even abstaining from intercourse doesn’t fully protect you.

We felt it could be so unfair that the combination of choices, bad luck, and lack of education from our previous lives could have the ability to affect our current lives so drastically. The results of that first round of co-testing led us to postpone starting a family. My STD Clinic Test doctor told me to return in six months. Six months later, I was in the same spot -normal Pap, HPV positive.

I Was Not Fighting This Off

We were all stumped by this. All the information out there about reasons that you don’t fight it off. A poor diet, unhealthy weight, and smoking didn’t apply to me. All my doctor could say was that stress lowers your body’s ability to do its job and that HPV is very common. We were encouraged to keep living our healthy lifestyle and advised that it would probably go away by the next follow-up. But six months later, at the second follow-up, my co-test showed low-grade ASCUS, and I was still HPV positive.

I was still not fighting this off. Just the opposite! It was getting worse. My doctor didn’t want to play the waiting game any longer. She referred me to a gynaecologist who specialised in treating STDs. I had to wait three weeks for the appointment with the specialist. Although no one was sure how long I’d been carrying around this unwanted guest, we couldn’t wait to get rid of it now that we knew it was here.

Both my husband and I attended the appointment. She did a colposcopy and noted that a majority of my cervix turned white from the acid solution. This led to a biopsy. She told us the next steps depended on the HPV home test results. The scale varied from watchful waiting to total hysterectomy. You try not to think the worst. However, in just 12 short months, we’d gone from STD co-testing to be safe, to follow-up, to low-grade ASCUS to biopsy. It seemed we were pressing on full steam ahead in the wrong direction.