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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 siteplannedparenthood.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.

0909_spinelli_main

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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Related: Art dodgers, Losing common ground, Safe sex, duh, More more >
  Topics: Lifestyle Features , Culture and Lifestyle, Health and Fitness, Cervical Cancer,  More more >
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13 Comments / Add Comment

Sara Faith Alterman

 Bravo.

Posted: September 03 2009 at 9:51 AM

David Delmar

 Props.

Posted: September 03 2009 at 10:42 AM

amanda murphy

Great article, thanks so much for sharing your story!

Posted: September 03 2009 at 10:48 AM

allisor

(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.
Posted: September 07 2009 at 3:25 PM

Ninjaman

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.

Posted: September 07 2009 at 10:09 PM

deborah83

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.

Posted: September 08 2009 at 10:49 AM

Lisa Spinelli

 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: http://su.pr/2j6ujq

Posted: September 11 2009 at 4:40 PM

Lisa Spinelli

 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: http://su.pr/2j6ujq

Posted: September 11 2009 at 4:40 PM

lavendarotter

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.

Posted: September 14 2009 at 2:51 PM

Anonymous

Thank you for providing a personal perspective from someone actually living with HPV. I too have the virus and have run into the same spattering of general information rather than specific, necessary facts. I appreciate your sharing of your own story as a way to put more information out there. Im surprised with some many of us out there than no one had beat you to it.
Posted: July 20 2010 at 1:56 PM
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