Many rumors swirl around the human papillomavirus or HPV, which is tested for during cervical screenings such as HPV tests and Pap tests. Some of the most common myths are that only women can get it, that you can only get it from penis-in-vagina (PIV) sex, that it’s rare, and that it always means cancer, according to Jo’s Cervical Cancer Trust.
HPV is the name of a very common group of viruses. These viruses generally do not cause problems for most people, but some types can cause genital warts or cancer. “HPV is not very well understood despite how common it is,” says Samantha Dixon, chief executive of Jo’s Cervical Cancer Trust. “Many women and people with a cervix see it for the first time — ever — on their results letter and go straight to Google, only to find horror stories.” In addition to misconceptions there is accompanying stigma, says Dixon. “We also, sadly, hear from people with HPV who feel ashamed or as though they have done something ‘wrong,’ but this is really not the case.”
Because people are commonly exposed to HPV through vaginal or anal sex and, in some cases, it can lead to cervical cancer, the majority of messaging around HPV focuses on the experiences of cis, straight women. But the fact is that HPV can be passed on through any kind of skin-to-skin or (mouth-to-skin) contact and can affect anyone, regardless of sex or gender.
These myths have a ripple effect for everyone but particularly LGBTQ+ people. Lesbians and bisexual cis women are frequently told they don’t need cervical screenings; there is widespread misinformation about how HPV is transmitted; trans people and non-binary people who retain cervixes are often unable to comfortably access testing; and those who have never had penetrative sex might avoid screening altogether.
In 2018, the LGBT Foundation found that about 40% of LGB women have been told that they don’t need to access a cervical screening because of their sexual orientation. A cervical screening pilot specifically for trans and non-binary patients in the UK was launched in 2019 and has been successful, but a small study published in the British Journal of General Practice in 2021 also found that more than 40% of trans and non-binary people with cervixes who were eligible for general screening did not attend, and 65% reported having delayed testing at least once. This was, in part, due to misconceptions and inequities within the healthcare system, the study found. The Centers for Disease Control and Prevention notes that trans people specifically sometimes “avoid cervical cancer screening because of multiple factors, including discomfort with medical examinations and fear of discrimination.” And yet, as the American Cancer Society points out: “Cervical cancer can affect any person with a cervix,” and so screenings, regardless of gender identity or sexual orientation, are prudent.
Beth, 27, was given very little information that applied specifically to her being in a same-sex relationship and was terrified to learn that she had HPV.
“At the time, I think I was so nervous about the whole thing, I never really thought to ask the questions myself,” she tells Refinery29. This put a lot of strain on her relationship. “Essentially I became very paranoid about sex and avoided it completely for several months,” she says. “I sent my partner for a smear test in the meantime to put my mind at ease (which came back totally clear).”
She adds that she “didn’t find much help online for the LGBTQ+ element in HPV. I saw many stories around heterosexual couples and how they were coping but it wouldn’t be much comfort when the other person in my relationship also has a cervix.”
Anna, 26, had a good experience at her screening but even then the idea that you only get HPV from PIV sex persisted. “I was trying to bargain with my nurse,” she explains, “saying, ‘If I never have sex ever with someone with a penis, can I delay my next smear?’ The reply was, ‘No, it’s better to be safe than sorry.'”
Making sure everyone with a cervix has safe and supportive access to HPV and Pap tests and that the myths around HPV are dispelled is vital. Eight in 10 of us will get HPV in our lifetime and nine in 10 will clear their HPV infection naturally in two years, the Centers for Disease Control And Prevention notes. But getting vaccinated and screening for all types of HPV is key to preventing the development of cervical cancer. And while these screenings have become more common, more and more people are also hearing that they have HPV without fully understanding what that means.
“If HPV is not understood,” says Dixon, “we risk heaping stigma on people at a time which can already be stressful and the mental toll of this can be huge. We also need to keep talking about cervical screening to encourage attendance. If shame is connected to results then there is a danger that this won’t happen.”
Editor’s note: Some sources in this story are referred to by their first name only or by a pseudonym in order to protect their identity.
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