Danielle Sepulveres was too embarrassed to tell people when she was diagnosed with human papillomavirus (HPV) 12 years ago, even though it’s estimated to be the most common sexually transmitted infection in the U.S. by the Centers for Disease Control and Prevention. Now, she’s written a book about her experience, “Losing It: The Semi-Scandalous Story of an Ex-Virgin,” to encourage others to forego the blushing.
Here, she talks with HealthCentral about her journey with the infection that can lead to cervical cancer in women if left untreated.
HealthCentral (HC): When were you diagnosed with HPV?
Danielle Sepulveres: I was 23. I was completely shocked and terrified because I had only had one sexual partner. And I didn’t really know that much about it because 12 years ago compared to now, it was very different what you could find on the internet.
HC: What went through your head when you got the call from your doctor?
Sepulveres: I was in shock because I thought I had been so responsible: I was on birth control and using condoms, and I was still getting this call. I was lucky because my doctor was very calming. He could tell I was starting to panic, and he was talking me down off a ledge. He told me that it’s very common, that I could call anytime with questions, and that we were going to get through this. Without him, I don’t know that I would have been OK. He’s a huge reason why I talk about what I went through and how open I am about talking about it
I didn’t [talk to anyone else about it] for a while… just one girl I worked with because I got the call at work. She helped calm me down. And she drove me to an appointment because I couldn’t bring myself to tell my mom. I was embarrassed; my friends had never talked about it. And I thought, I’m the last one to be having sex — why am I the one [to get HPV]? It took a toll on me, and I started confessing to my friends. A lot of them didn’t know about it, but they were so willing to listen. And it turned out some had experiences with it but [had] also been afraid to talk about it.
HC: What was your treatment like?
Sepulveres: I had cryosurgery twice, where they try to freeze the abnormal cells with liquid nitrogen. But it didn’t work. Because I was so young, my doctor was trying to avoid the LEEP [loop electrosurgical excision procedure] because with cryosurgery, the cells sometimes just pop off and disappear. But that didn’t happen, so I did the LEEP procedure. [LEEP uses an electrical wire loop to remove the abnormal cells.] It’s a very quick procedure; it doesn’t feel great, but after that there was no evidence of HPV on my cervix. I had to go back every six months for two years before I got the all clear. Everything’s been perfectly good since then, but for a very long time I dreaded going for that annual visit.
HC: Why did you decide to write a book?
Sepulveres: I think because I started doing all this research on my own to find out about [HPV], and I was finding that it was super common and there was all this information, but it was not really being channeled well. The woman who runs [Cervivor called Tamika and Friends at the time] was the only person on the internet who was there to answer questions about it. I reached out to her, and we became friends. She is a lifeline to a lot of people who had no one to talk to or were too embarrassed.
HC: What advice do you give people who are diagnosed with HPV?
Sepulveres: The first thing I say is don’t be embarrassed. So many of us have it and don’t even know. Second, don’t be afraid to ask questions of your health care provider or Planned Parenthood. If you’re feeling uncomfortable, send an email or talk on the phone to your doctor if face-to-face freaks you out. Third, don’t read anything online that’s not from a reputable source. And, Cervivor is a great community to reach out to … and people can email me.
I have no issue whatsoever with the [HPV] vaccine. It’s not going to encourage people to have sex; it’s just given at a young age because they develop higher antibodies then. And hey, it prevents cancer and the spread of HPV.
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Sheila Mulrooney Eldred is a graduate of Columbia’s School of Journalism and a former newspaper reporter. As a freelance health journalist, she writes about everything from deadly diseases to elite athletes, including superbugs, opioids, ticks and laughter yoga. Her stories have appeared in The New York Times, Nature, FiveThirtyEight, Pacific Standard, STAT News and other publications. In her spare time, she and her family love to explore trails via running, cross-country skiing and mountain biking in Minneapolis.