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Living with HPV

It afflicts millions, yet no one talks about this nightmarish STD. Now one woman bares all.
By LISA SPINELLI  |  September 4, 2009

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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. 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.”

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Related: Art dodgers, Losing common ground, Safe sex, duh, More more >
  Topics: Lifestyle Features , Culture and Lifestyle, Health and Fitness, Medicine,  More more >
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Comments
Re: Living with HPV
 Bravo.
By Sara Faith Alterman on 09/03/2009 at 9:51:18
Re: Living with HPV
 Props.
By David Delmar on 09/03/2009 at 10:42:25
Re: Living with HPV
Great article, thanks so much for sharing your story!
By amanda murphy on 09/03/2009 at 10:48:42
Re: Living with HPV
(Sorry if this shows up multiple times; had browser trouble.) "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.” Ahh, I see. So if you have gonorrhea or herpes, you ARE a promiscuous slut. I appreciate you trying to reduce the stigma around HPV, but is it necessary to reinforce the stigma of other STI's? Gonorrhea and herpes are also very common and may not always be avoided by using condoms.
By allisor on 09/07/2009 at 3:25:39
Re: Living with HPV
More Bravo's for this article. If I'm not mistaken, because HPV can migrate, a person can be susceptible to anal cancer w/out ever having anal sex. Another page in this horror script.
By Ninjaman on 09/07/2009 at 10:09:55
Re: Living with HPV
I thank you for sharing your story, as many of my loved ones have experienced grief due to this painful disease. My only problem with your story is your down playing of the benefits of the gardisil vaccine. Clinical trials had proven the vaccine to be between 90-100% effective in preventing the transmission of some strains of the Human Papillomavirus (HPV) that cause cervical cancer. Side effect reports are minimal when compared to other vaccines of this nature. What appals me most is how many school districts instruct young people about STD's. Shame and disgust are being preached and many are very uninformed about the true realities about living with an STD. Thanks.
By deborah83 on 09/08/2009 at 10:49:36
Re: Living with HPV
 Yikes! Good note on readers' part(s) with Dr. Barton's quote, I do NOT think she meant to say that having herpes or any other STD equates promiscuity. I think the mash-up of those two sentences and separate thoughts together look like that, but my impression was that she meant HPV is not like other STDs because of its prevalance and that doctors consider everyone who has had sex as exposed whereas they do not think that with other STDs. But having ANY STD/STI has nothing to do with being a slut/manwhore. ANYONE can get an STD/STI from just having sex once really. To talk about how to tell a partner about an STD or any other health issue you have I think health.com has a good article on this: //su.pr/2j6ujq
By Lisa Spinelli on 09/11/2009 at 4:40:05
Re: Living with HPV
 Yikes! Good note on readers' part(s) with Dr. Barton's quote, I do NOT think she meant to say that having herpes or any other STD equates promiscuity. I think the mash-up of those two sentences and separate thoughts together look like that, but my impression was that she meant HPV is not like other STDs because of its prevalance and that doctors consider everyone who has had sex as exposed whereas they do not think that with other STDs. But having ANY STD/STI has nothing to do with being a slut/manwhore. ANYONE can get an STD/STI from just having sex once really. To talk about how to tell a partner about an STD or any other health issue you have I think health.com has a good article on this: //su.pr/2j6ujq
By Lisa Spinelli on 09/11/2009 at 4:40:13
Re: Living with HPV
Colposcopies are not necessarily painless. Both getting high enough in can be painful if one is tight and the biopsy itself can hurt. It helps if you know other women who have had them and who can recommend a doctor who is gentle and careful. Here's hoping my cells stay normal. I never want another colposcopy. Once the initial fear is over (a series of normal pap smears), one can forget out the virus for awhile. Thanks for writing the article.
By lavendarotter on 09/14/2009 at 2:51:43

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