Many rumours swirl around the human papillomavirus or HPV, which is tested for during a cervical screening. Some of the most common 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 do not cause any problems in 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 Samantha. "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 HPV is most commonly spread through vaginal or anal sex and 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 contact and can affect anyone, regardless of sex or gender.
These myths have a knock-on effect for everyone but particularly LGBTQ+ people. Lesbians and bisexual cis women are frequently told they don’t need cervical screening; there is widespread misinformation about how HPV is transmitted; trans men and non-binary people who retain cervixes are often unable to comfortably access screening; and those who have never had penetrative sex might avoid screening altogether because the procedure is painful for them.
In 2018 the LGBT Foundation found that 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 proven incredibly successful but a small study published in 2021 found that almost half of trans and non-binary people with cervixes who were eligible for general screening did not attend due to their gender identity.
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 was HPV positive.
"At the time I think I was so nervous about the whole thing, I never really thought to ask the questions myself," she tells R29. This put a lot of strain on her relationship. "Essentially I became very paranoid about sex and avoided it completely for several months. 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 cervical screening 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 but screening for all types of HPV is key to prevent the development of cervical cancer. And as most of the UK now looks for the virus at the cervical screening, more and more people are hearing that they have HPV without fully understanding what that means.
"If HPV is not understood," says Samantha, "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."