Life

What Sex And Dating Is Really Like For Women With HPV

by Natalia Lusinski
Ashley Batz/Bustle

You may think you're immune to HPV — however, if you've ever had sex, even just once, you're a candidate for it. And, it's a lot more common than you think. If there were an STI popularity contest, it would win — it's the most common STI in the United States. According to the Centers for Disease Control and Prevention (CDC), nearly 80 million people — about one in four — are currently infected with HPV in the U.S. You can add even more people to that number when you think about all the unreported cases. In addition, about 14 million people become newly infected each year. But, due to the stigma attached to it, not all of those people are quick to tell others about their HPV diagnosis. That shame and guilt may lead some people with HPV to remain silent about it, which means they may not seek proper treatment, not get screened or tested regularly, or keep their diagnosis a secret from their sexual partners — all things that only make matters worse.

Adina Nack, Ph.D., was diagnosed with a cervical HPV infection at the age of 20. To say it was life-changing is an understatement. "In the midst of my own 'diagnostic shock,' I wanted nothing more than to know that other women who received a similar diagnosis had gone on to receive good medical treatment," she tells Bustle.

After her diagnosis, Dr. Nack was so inspired to help other women with HPV feel less stigmatized that she wrote a book about it, Damaged Goods?: Women Living With Incurable Sexually Transmitted Diseases. "Given the high rates of sexually transmitted diseases, like HPV, it is not enough to only focus on education and prevention," says Dr. Nack. "There are individual and public health benefits from us talking openly about how you can go on to live a healthy and happy life after contracting a sexually transmitted infection, even one that is medically incurable, like HPV and herpes. We need to talk more about the gender-based double standard of sexual morality: male social status typically increases as their number of sexual partners increases, whereas female social status typically decreases. This has lead to sexist stereotypes about people with STDs."

But even though most sexually active people have had HPV, Dr. Michael Krychman, MD, OB/GYN, sexual medicine gynecologist and the executive director of the Southern California Center for Sexual Health and Survivorship Medicine and co-author of The Sexual Spark: 20 Essential Exercises to Reignite the Passion, tells Bustle, many don't know how they were infected. "It is important to know the facts about HPV," he says. "HPV is spread through close contact of genital skin, primarily during penetration either vaginally or anally," he says. But penetration isn't the only way it can be transmitted.

Even though condoms are the best precaution against HPV, it can still be transmitted via intimate skin-to-skin contact, according to the CDC. "People get HPV from another person during intimate sexual contact," the CDC states. "Most of the time, people get HPV from having vaginal or anal sex. Men and women can also get HPV from having oral sex or other sex play. Although some studies suggest that oral HPV may be passed on during oral sex (from mouth-to-genital or mouth-to-anus contact) or open-mouthed kissing, the likelihood of getting HPV from kissing or having oral sex with someone who has HPV is not known."

But How Does Someone Know If They Have HPV?

HPV itself is named after the warts, papillomas, that some people with HPV get. However, in most cases, the body's immune system gets rid of an HPV infection before it creates warts, according to the Mayo Clinic. Additionally, not everyone with HPV gets genital warts, and they vary in appearance based on the type of HPV. "It's important to note that in most cases, an HPV infection is typically removed and or cleared by the body," says Dr. Krychman. But other HPV infections are chronic and some are persistent, so linking in with your medical professional will help ease your anxiety."

So how can it just go away? According to the Foundation for Women's Cancer, the average length of an HPV infection is between four and 20 months, and most people get rid of it within two years. However, not all HPV goes away, and HPV infections can lead to more serious health issues; hence, why it's important to take care of it sooner rather than later.

"Estimates are that from 50-80 percent of sexually active men and women acquire genital HPV infection at some point in their lives," says Dr. Nack. "In 90 percent percent of cases, the body's immune system clears the HPV infection naturally within two years, but, depending on your overall health, HPV treatment may be the best course of action. If you are diagnosed with HPV, then it's important that your tissue sample is 'viral typed' so that you know if you have a type likely to cause cancer or warts. Regular Pap smear tests can identify abnormal or pre-cancerous changes in the cervix so that they can be removed before cancer develops, and these should be continued after your HPV diagnosis to monitor any changes to your infection."

Other women who have received an HPV diagnosis can relate to the shock and stigma, too. One of them is 35-year-old Danah. "When I was first diagnosed with HPV, I completely stopped having sex," she tells Bustle. "I was terrified — terrified to have sex, terrified to get another STD. I planned to stop all sexual contact until I received an HPV negative screening from my doctor, but in reality I was not ready to re-enter my sexual life for much longer. While it only took a year for my body to clear the virus, it took three years before I was comfortable with sex and, even then, it was very tenuous. Because of the circumstances around my initial HPV contraction, I had lost a lot of trust in men. I felt lied to and, in a way, abused. I suffered major depression for years following my diagnosis. It took a huge toll on my life in every possible way — my ability to work, have meaningful relationships, and contribute to society. For me, the HPV diagnosis was a kind of sexual trauma, and it was only after years of therapy and medication that I was able to come out of my depression and begin to trust men again."

As a result, Danah started a nonprofit, HPV Hope, to offer support and information about HPV. "I wanted to talk with other men and women who were feeling angry, confused, and stigmatized," she says. "HPV is the most common STI and, ironically, the least talked about."

People educate themselves on HPV after their diagnosis in different ways. Whether they read about it in places such as Dr. Nack's book, join organizations like Danah's, or talk to their doctor, knowledge is key. However, some women who get diagnosed speak to people close to home, such as their friends and parents. Ashley, 23, confided in her mother when she discovered she had it. "I was freaked out when I found out I had HPV," she tells Bustle. But she felt better after talking to her mother about it, who had also been exposed to HPV. "I found a lot of comfort knowing my mother also had a Pap smear showing she carried HPV," says Ashley.

Ashley Batz/Bustle

Laura, 31, didn't know she had HPV until her ex-girlfriend called her and told her that she had it. "HPV never crossed my mind," Laura tells Bustle. "I'm bisexual and pride myself on staying safe, sexually, with both men and women. When my ex, K, called me to say she had HPV, she said I likely did, too. Though I wanted to panic, I did not; I had loved K, and I knew she didn't knowingly give it to me. I went to see my OB/GYN, and she did a Pap smear. The results came back — abnormal cells on my cervix. But she didn't do anything else; she suspected HPV, said I was otherwise healthy, and said we'd do another Pap later on to see if the cells were back to normal. They were, and the HPV was gone. But women-with-women and women-with-men should definitely talk about it with each other if they're sexually involved!"

While for some an HPV diagnosis wasn't a big a deal, the fear of being shamed was. "I've had HPV for 10 years now and it hasn't affected my sex life," Carmen, 34, tells Bustle. "When I was diagnosed, I was not scared, really, just anxious, and afraid that if I told someone I would [be stigmatized]. I told some friends, and a sorority sister told me that it's as common as the common cold — several people have it." But even though it's so prevalent, getting diagnosed with HPV can still be incredibly challenging.

Having "The Talk" With A Partner

After receiving an HPV diagnosis, the next step for many women is telling their partners about it — which isn't always easy. "Once I accepted the fact that all sex comes with some risk, I felt empowered and able to enjoy my sex life again," says Danah. "I would tell my partners about the HPV right away. I found the longer I kept it to myself, the more shameful I felt about it, like it was something that I had to hide. The more open and easy to talk to about it I was, the more receptive and calm my partner was."

Sherry Ross, MD, OB/GYN and women's health expert, also encourages women to tell their partners about their HPV status sooner rather than later. "I advocate talking to a new partner before you get intimate," she tells Bustle. "I'd suggest having this conversation before you have a couple of drinks and before you've strewn your clothes around the room. Have it on a date or during dinner if you feel the relationship is heading towards sexual intimacy. Make it part of your dating routine to bring up the subject of STIs. As unromantic as it may seem, make it a priority even before kissing. Honesty is the best policy, especially in the bedroom."

Dr. Nack, too, advises telling partners about your HPV status, plus, continuing to have safe sex. "At the point when you tell them you've been diagnosed with HPV, mention the statistics to normalize your status: like the fact that up to 80 percent of the sexually active population in the U.S. has been infected by HPV," she says. "Also, mention that the new Gardasil 9 vaccine protects against the nine most common types of HPV — find out if they've been vaccinated. If you're both not vaccinated, then it could be an early-relationship outing. Trust me, you'll weed out the wrong dating partners depending on how they react to this conversation. But remember — no vaccine is 100 percent effective. We all need to be better educated about this national epidemic (and global pandemic) of a family of viruses."

When it came to Ashley and her HPV status, she was upfront with her boyfriend about it. "I was dating a new boyfriend for four months at the time I was diagnosed with HPV, and we had already starting having sex," she tells Bustle. "I only made him wear condoms for the first couple weeks of our relationship. By the way, he hates wearing condoms! When I found out I was positive for HPV, I didn't know what to tell him. I told him that my Pap smear test showed the presence of HPV. He said he got the vaccine and not to worry. I was confused, really, but since my boyfriend was cool with it, I decided not to worry either."

Though Ashley was 23 when she found out about her HPV, HPV does not discriminate when it comes to age. One of Dr. Ross' patients, Leslie, did not find out about her HPV diagnosis until later in life — at the age of 40. "I got married when I was 25 years old to my college sweetheart," she tells Bustle. "Jared and I were together 15 years, and married for 11. He was my first love, my first sexual partner, and my first divorce at 40 years old. I started dating a lot when I got divorced at 40, and tested positive for HPV the first year of my divorce. I never got the HPV vaccine and I never had a condom."

But HPV changed the no-condom precedent for Leslie. "After panicking, I did a lot of research about HPV and realized it's not a death sentence or an end to my sex life," she says. "Once I learned about how contagious HPV is, I make sure all my sexual partners wear a condom every time I have sex. I basically tell them during our dinner or cocktail that I have HPV and we need to wear condoms when we have sex. Most guys are good with this information. No one has turned me down yet!"

Who's Getting Vaccinated?

Leslie even decided to get the HPV vaccination. "I supported her decision to get the HPV vaccination even though she is in her 40s and it's not completely supported by the medical community," says Dr. Ross. The CDC recommends that people start getting the HPV vaccine at age 11 or 12. They also advise that women through age 26 get it, as well as men through age 21. If someone is past these ages, it is best that they discuss vaccination options with their doctor.

Some people don't realize that men, too, can get vaccinated for HPV. Men often do not know they have HPV, then end up passing it on to their sexual partners. "One of the problems with this particular STI is that most people are unaware that they carry HPV, especially men," Dr. Ross says. "Unfortunately, men do not have an equivalent to the Pap smear, which allows detection of HPV. Unless men have warts or a history of warts, they have no way of detecting this epidemic virus. Even a condom does not provide complete protection against HPV since the virus may live at the base of the penis or in other exposed areas, thereby allowing it to pass to the woman during sexual intercourse."

However, some men do know they have it. And then what? "I was hooking up with a guy who knew he had it and didn't tell me until months later," Rose, 30, tells Bustle. "Luckily, I had gotten the vaccine and I was OK. I still went to my doctor, who told me, 'Everyone has it.' But the thing is, this guy knew he had it and still didn't tell me initially. People say guys never know they have it, and here is one who did and he still wasn't being responsible about it. I feel like HPV is just one of the many things surrounding sex where women take the burden."

"An infected person, sadly, has reason to fear that others who find out about their STD will view them negatively."

So why do some men — and women, for that matter — not speak up about their HPV diagnosis? It's all about the stigma. Most of the women Dr. Nack interviewed for her book were devastated by both the medical, psychological, and social aspects of their diagnosis. "If someone feels ashamed and guilty about their medical condition, then they're more likely to not comply with health practitioners' recommendations for treatment either, because of coping with the stress by going into denial or because their self-esteem is damaged in such a way that they may not believe they deserve to improve their health," she says.

Sometimes the shame of being diagnosed can even end up creating more infections. "Sadly, genital HPV and herpes infections tend to have damaged not only their health, but also their self-esteem and their relationships," Dr. Nack says. "An infected person, sadly, has reason to fear that others who find out about their STD will view them negatively. This could make them less likely to tell their current and future sexual partners about their STD status, leading to more infections." Talk about a catch-22.

The Risk Of Cervical Cancer

One of the biggest dangers with HPV is that it can lead to cancer, particularly cervical cancer in women. There are over 100 kinds of HPV, according to the U.S. Food & Drug Administration, categorized by low-risk and high-risk. It is the high-risk types of HPV that can cause abnormal cells to be found on the cervix, which can then lead to cervical cancer. "There are many types of HPV, some more high-risk than others at increasing your chance of getting cervical, oral, or anal cancers," says Dr. Ross. "High-risk types of HPV types include 6, 11, 16, 18, 31, 33, 45, 52, and 58. The current HPV vaccine can reduce your risk of developing these types of cancers by 90 percent."

According to the CDC, cervical cancer is usually diagnosed at younger ages versus other HPV-associated cancers, with the median age being 49. Overall, HPV is thought to be responsible for about 91 percent of HPV-associated cervical cancers. Approximately 11,700 new cases of HPV-associated cervical cancer are diagnosed in the United States each year.

Stephanie, 45, just had an HPV-related cancer scare. "When they told me initially, I wasn't that concerned since my doctor at the time didn't seem all that concerned — saying that 75 to 80 percent of the population supposedly has HPV, and a majority of the time it goes away or doesn't have adverse affects," she says. "But, because I'm older, it doesn't go away as fast and has the chance of staying. It caused some pre-cancerous cells and I had to have a procedure called a LEEP where they go in and take out any abnormal cells. After the procedure, I had another Pap and it came back normal — no pre-cancerous cells and no HPV. But it was present for about a year before the procedure."

In Stephanie's case, her pre-cancerous cells were found during a Pap smear. Testing-wise, there are HPV tests that can be used to screen for cervical cancer, according to the CDC. However, tests are only recommended for screening in women aged 30 and older. They are not recommended to screen men, adolescents, or women under the age of 30 years. Dr. Ross agrees with testing in women 30 and older, "but, in practice, we test sooner. So often HPV is most commonly found in women in their 20s and 30s."

Ashley Batz/Bustle

In addition, the CDC recommends that women from 21 to 65 get regular screenings done. "All women should begin cervical cancer testing (screening) at age 21," says Dr. Ross. "Women 21-29 should have a Pap test every three years. HPV testing should not be used for screening in this age group (although it may be used as a part of follow-up for an abnormal Pap test). Then, beginning at age 30, the preferred way to screen is with a Pap test combined with an HPV test every five years. This is called co-testing and should continue until age 65."

Given that so much of the population has it, opening up a dialogue about it will help others feel less stigmatized about having it, too. "When I started telling my friends, both male and female, about my HPV diagnosis, most of them had heard of HPV, had it themselves at one point, or had a partner or friend who had it," says Danah. "Sharing my story and helping others who were going through the same thing played a big part in my recovery. The more HPV was normalized, the more comfortable I felt with it, and the more comfortable I felt with it, the less shame and anger I carried about it."

The fact that certain strains of HPV can have such detrimental health consequences is yet another reason to be honest and upfront with your sexual partners about your HPV status.

Breaking Through The Stigma

As you can see, getting diagnosed with HPV isn't the end of someone's love life. It affects different people in different ways, and more people get HPV than you may have realized. Aside from getting regular medical check-ups — and possibly getting vaccinated, which you and your doctor can discuss — having safe sex and communicating with your sex partners honestly about your sexual past can help lessen the risk of getting HPV.

"I learned how to manage the stigma and shame, find true love, get married, and give birth to a healthy baby," says Dr. Nack. "I realized that this was a tall order, and I have been fortunate enough to have all of these things come true for me." All in all, talking about it can make an HPV diagnosis less stigmatizing. And as you can see from the women above, with HPV, you can continue to have a healthy dating and sex life. Instead of being an STI that may cause shame or embarrassment, it's an STI everyone should be talking about.