Living with HPV

By LISA SPINELLI  |  September 4, 2009

One would think that if at least 20 million Americans are carrying this virus (with another 6.2 million contracting it every year), there would be mountains of information out there, plus a whole lot of people coming forward to talk about their experiences. But that is yet another source of frustration: while there are some good resources online (the CDC Web, and, to name a few), there are virtually no real-life accounts from people battling and dealing with the virus. If you are looking for a human to retell her (or his) story in full and give you some basic answers — like “Could this come back?” — you’ll unwittingly embark upon an online scavenger hunt that could last well into the next century.

Part of the difficulty in finding first-hand accounts has to do with the stigma attached to HPV. People are ashamed to admit they have it, because STDs connote “dirty.” But the eye-opening number of people who have it make such a stigma out of place.

In fact, doctors I spoke with say that, when treating sexually active individuals, they act as if everyone has HPV. Even oral sex is no high ground from the dangers of the virus, as it can, believe it or not, lead to throat cancer. Nor will using condoms completely protect against HPV; while they greatly reduce the chances of getting it, they hardly ensure it.

“The biggest misconception about being infected with HPV is that it’s like being infected with gonorrhea or herpes,” says Dr. Barton. “Basically, if you’ve been sexually active, you’ve been exposed. It doesn’t [equate to] sexual promiscuity.”

Having an STD that many associate with being a slut is not the easiest thing to come forward with, which is probably why many don’t. But I have no shame (my nickname up until a few years ago was Dirty), so I’m willing to be the human poster child out there if it helps the mystified myriads of you with HPV reading this article understand it better.


My story
Like most people, at first I played into the societal misconceptions of the virus and blamed myself. Then I blamed my fiancé (now husband) — especially after he told me one of his exes from college had cervical cancer (which is usually caused by HPV). But, really, like Dr. Barton says, if you’ve had sex, you’ve been exposed to the virus. Dr. Barton also cautions that the virus can be dormant in your body for
doctors-don’t-even-know-how-long before it decides to create a lesion, or wart, or some outward sign (if it does at all).

So, though I understand the urge to do so, the blame-game is best left alone. Besides, there are no door prizes for figuring out where it came from.

There are so many mysterious aspects to HPV, as well, including the fact that it is a shape-shifting, elusive enemy. “A lot of times, people don’t know that viruses can live in their bodies forever,” says Olivia Lau, a nurse practitioner at Planned Parenthood in Somerville, speaking of HPV strains. “They [might] never go away. We’ve had abnormal PAPs [PAP smears], colposcopies [more on this one later], and then they go back to normal, and then, down the road, they come back abnormal again.”

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    The results are “normal.” I breathe a sigh of relief. But should I be relieved? It’s been two years since I heard a registered nurse tell me “You have HPV,” and I am still getting scraped from the inside out, still making appointments to see doctors, and still terrified that I’ll get cancer.

 See all articles by: LISA SPINELLI