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. Abnormal cells have appeared and disappeared, then reappeared again, like a cheesy David Blaine trick — an ordeal made worse by the fact that, really, so little is openly discussed about this sexually transmitted disease.
Not familiar with this nightmare? Well, the human papilloma virus (HPV) has probably affected someone you know. According to a fact sheet from the Centers for Disease Control (CDC), at least 50 percent of all sexually active Americans will eventually contract HPV. Other estimates from such organizations as the American Social Health Association — a nonprofit organization and creator of the National HPV and Cervical Cancer Prevention Resource Center — put the number of those who have the virus at more like 75 percent. That’s because, as with many sexually transmitted diseases (STDs), some people who have the virus do not even know they are carriers. In fact, there is no test to determine if a man has HPV. One of the only outward signs through which a man can confirm he has the virus is if he sees genital warts and then goes to the doctor for treatment, says Dr. Sara Barton, a visiting third-year resident at Brigham and Women’s Hospital.
As for women — whom the disease affects more directly (and, at its worst, fatally) — HPV can also be a stealthy foe. The disease can remain indefinitely undetected in that it is possible for a female to develop an infection that could clear before she goes into a gynecologist’s office for her annual exam. Not even a PAP smear — a painless test done when a doctor swabs a woman’s cervix to test for abnormal cells — will pick up all cases. Thus, the 75 percent figure hardly seems hyperbolic.
What this means, statistically, is that if you haven’t gotten the virus, your partner (or a former partner) probably will. And if you remain sexually active — guess what? — that means you probably will too. (Regardless of your gender or sexual orientation.)
Welcome to the club.
The most debilitating aspect of HPV is not the pelvic ache or cramping, the incredibly uncomfortable scooping and scraping inside or outside your most sensitive parts, or even the waiting for results to determine if you have cancer. It’s having no fucking clue what’s coming at you next.
Half the battle
“Like [with] any STD, young women are not fully informed,” says Judy Norsigian, executive director and a founder of the Boston Women’s Health Book Collective, a nonprofit women’s health-education, advocacy, and consulting organization. “There are lots of Web sites with information, but it’s very general.”
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 site, plannedparenthood.com, and webmd.com, 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.