Do I need to attend cervical screening if I’m queer?
The short answer is yes, if you have a cervix.
Cervical screening (sometimes called ‘the smear test’) is a routine check for all women within the screening age group, free on the NHS. In the UK, anyone between the ages of 25 and 64 who has a cervix should go for regular cervical screening. Screening significantly reduces your risk of cervical cancer. If you’re eligible, you’ll be invited for screening every 3 to 5 years, depending on your age.).
Trans men and non-binary people who have a cervix should also attend screening. If you’ve had a hysterectomy, you may still have a cervix. Not all hysterectomies remove the cervix, so check with your surgeon if you’re not sure. If you are registered as male with your GP, you may not be sent a screening invite through the national screening programme. Contact your GP practice to arrange a screening appointment.
Why is cervical screening important?
Cervical screening checks the health of the cells in your cervix. The test helps to spot changes to these cells so that any problems can be treated quickly, before they develop into cervical cancer. Changes are caused by a very common virus called HPV (Human Papilloma Virus). Routine screening prevents up to 75% of cervical cancers developing.
Why are cervical screening rates lower among LGBTQ+ people?
Research by the LGBT Foundation showed that 17.8% of lesbian, gay and bisexual (LGB) women of eligible screening age (25 to 64) have never been for cervical screening. The research found that LGB women face a range of barriers to taking up their appointment. For example, fear of the procedure, or inappropriate questioning by health professionals about sexuality or sexual activity.
Data around attendance by trans men and non-binary people is limited; anecdotal evidence and small studies suggest that these groups are much less likely to attend cervical screening than cisgendered women. Barriers include fear of revealing or discussing gender and sexuality with health professionals, being turned away, or just not being included on the national screening programme list in the first place.
One of the greatest barriers for LGBTQ+ people is a misperception that you don’t need a cervical screen if you don’t have sex with a penis. Some LGB women reported that they’d been told that they didn’t need cervical screening, or didn’t take up their appointment as they didn’t think it was for them. According to Cancer Research UK, 99.8% of cervical cancers are preventable. I wanted to find out more about why LGBTQ+ people were being put off this crucial health check.
One queer woman’s experience of cervical screening
I spoke to one of the SH:24 team, Linnea, about her experience of her routine cervical screening appointment. “I wasn’t worried about going for my smear test. I work in sexual health and so I thought I had a good understanding of what went on. Before the test, the nurse asked if I was sexually active. When I said yes, she asked if there was any chance I could be pregnant. I said there was no way I could be pregnant. She asked if I used contraception, and I said no. Then she asked how I was sure I wasn’t pregnant, so I told her I had a girlfriend.”
The LGBT Foundation’s research found that many women felt they had been forced to reveal their sexuality even when it was irrelevant to the screening test. Linnea continued, “If I hadn’t said that I had a girlfriend, I think she’d have made me take a pregnancy test, which would have been ridiculous, inappropriate and a waste of NHS resources.” “After I said I had a girlfriend she paused what she was doing, looked at me and asked ‘But you have had sex, right?’ It was obvious she meant ‘straight sex’ (I’d told her 2 minutes ago I was sexually active). I think she would have asked me to leave, if my answer had been no. It was implied that I didn’t need a smear test unless I’d had sex with someone with a penis. All of her questions were based on heterosexual relationships, and it seemed to put a spanner in the works when I didn’t fit into that assumption.”
The truth is that HPV is very common. I asked our own public health expert, Dr Gillian Holdsworth, about how HPV is passed on. “The fact is that most of us — if we’re sexually active — will get HPV at some point. Over 80% of people who are sexually active will have HPV. It can be passed on very easily through genital, skin-to-skin contact.” So it’s not just penetrative sex? “Not at all,” says Dr Holdsworth. “Oral sex, touching, mutual masturbation or even sharing sex toys could all allow HPV to spread between partners.” However, not all HPVs cause cancer. “There are over 100 variations of HPV. Only two can lead to cancer, but others can cause genital warts. Most HPV infections do not cause any symptoms, so many people don’t know they’re infected.”
The NHS HPV Vaccination Programme for 12 to 13 year olds helps to protect against the strains of HPV most likely to cause genital warts or cervical cancer. It reduces your risk, but you should still attend cervical screening if you’ve had the vaccine. Some LGBTQ+ people are eligible for free HPV vaccination if they did not receive this at school. Trans men are eligible if they have sex with other men and are aged 45 or under. Talk to your GP or sexual health clinic to find out more.
Although Linnea had been invited for screening, she felt that the nurse was trying to put her off. “By now I was feeling a bit uncomfortable, and the nurse said something like ‘I just need to check you actually need one’. She definitely made me feel like I was wasting her time. It made me question if I did need to have one, even though I’d got an invitation in the post.” The LGBT Foundation’s research showed that 40.5% of LGB women of screening age have been told, incorrectly, that they don’t need a cervical screen because of their sexual orientation.
“When I got home, I searched online to find out whether you can get HPV from non-penetrative sex,” said Linnea. “ If I hadn’t done that research, I might not have taken up any further screening invitations. It’s only because of my work that I felt able to look up some medical guidance and find out that HPV can be passed on during sex between two women.”
‘Sex’ can mean a lot of different things to different people. Unfortunately, guidance for health professionals can still be based on an assumption of heteronormative relationships. But the message should be simple — if you’re having or have had sexual contact with another person, and you have a cervix, then you should attend your regular cervical screening to reduce your risk of cervical cancer.
We asked our online community about their experiences of cervical screening as an LGBTQ+ person. Lots of people had good things to say about their appointment.
If you’ve felt put off or are unsure about whether you need cervical screening, it’s important that you talk to your GP or sexual health clinic. Give them feedback about your experience. The vast majority of health professionals want to support people to get the right care at the right time.
What is the cervical screening test like?
I asked Linnea how she found the procedure. Concerns about pain, embarrassment or discomfort can be a barrier for many women. For LGBTQ+ people, these worries can be exacerbated by a lack of understanding by healthcare professionals about your body and your experience. The test itself is fairly simple, although many women find it a bit uncomfortable and invasive. You’ll be asked to remove your underwear, then lie on a bed with your knees bent and open to the sides. The nurse will provide paper or a towel for you to cover yourself if you wish. The nurse will then gently push a speculum into your vagina. The speculum is usually a plastic tube (though can be metal) with a round end. It can feel a little cold.
“I thought it was pretty scary the first time,” said Linnea, “but I felt more prepared for my second appointment. I know now that [nurses] might assume you regularly have sex with a penis so will use a bigger speculum as standard. The first time was really painful and we had to try a few different speculums, but then found a smaller and different shaped one that didn’t hurt at all.” The speculum allows the nurse to see your cervix. They will then use a tiny brush to take a sample of cells from your cervix. This can feel odd, as it’s not everyday that someone brushes your cervix, but it should not feel painful. The nurse will then remove the speculum and give you time to get dressed. The procedure should only take a couple of minutes. Your sample will be sent to a lab for testing.
“At my second screening, the nurse had already made me feel like I was taking up her time,” said Linnea. “I just wanted it over with, so just asked for a small speculum and endured it.” said Linnea. “I find it a bit painful and invasive, but taking deep breaths asking the nurse to talk me through what they are doing helped me to relax.”
If you are worried about having a speculum inserted, you can ask the nurse to use a smaller size. You can also put the speculum in yourself, or ask a partner to do it for you. You can bring anyone you like to your smear test, if they will help you to feel more comfortable.
“Personally, I think [the nurses] need to be better at listening to patients and working under less assumptions,” said Linnea. “Going through a screen like this can feel really invasive, and, for me, there wasn’t any opportunity to discuss my feelings about it. It’s just — ‘answer there heteronormative questions and then lay down’. I’ve never been asked how I’m feeling about it or if I need anything to make me feel more relaxed.”
In fact, there are lots of ways that you or your nurse can make the test more comfortable. You could change position — lying on your side rather than on your back. You could ask for a small amount of lube to be put on the speculum. Deep, slow breathing can help you to relax. Jo’s Cervical Cancer Trust has some very helpful guidance on what happens before, during and after a cervical screening test.
Addressing inequalities in cervical screening for LGBTQ+ people
Linnea’s experience is not unique, though it is not necessarily the norm. Many GPs and sexual health clinics are well trained in supporting LGBTQ+ patients. Resources like the the LGBT Foundation’s Toolkit for cervical screening practitioners, Public Health England’s programme to reduce inequalities for trans people in cervical screening, and Stonewall’s Guide for the NHS aim to educate health professionals about how to understand the specific needs of LGBTQ+ people, questions that are appropriate and relevant to the situation, and make patients feel more comfortable in disclosing information that will help them get the right treatment. Linnea felt like the responsibility was on her as the patient to make sure she got appropriate care. “Based on my experience, you have to “either ‘out’ yourself or be really assertive with your needs,” she said. “This can be super hard if you don’t feel comfortable.” Sometimes, information about your sexual orientation or gender identity can help your health professional to give you the right advice and treatment. However, you should never feel pressured into sharing this information if you do not feel it is relevant or important, or if you just don’t want to.
More information about cervical screening for LGBTQ people
The LGBT Foundation has a useful guide aimed at lesbian and bi-sexual women. You can contact them if you’d like to discuss concerns about eligibility for cervical screening or what happens at the screening test. Call 0845 3 30 30 30, or email email@example.com.
Jo’s Cervical Cancer Trust has a fantastic range of resources about cervical screening. You can also call their Helpline on 0808 802 8000 or join their online forum.
This short NHS video gives some advice for trans men about what is involved in cervical screening, and how your health professional can help you to feel more comfortable at your appointment.
Illustrated by: Linnéa Haviland
Originally published at https://fettle.health on April 28, 2020.