No one likes to hear about cancer. And for queer people, sexual health can be a hard topic to navigate. But if you have a cervix, you need to be talking about cervical cancer.
Most people who are born with a vagina/front hole have a cervix. It sits at the top of your vagina/front hole and connects it to the uterus. I once heard someone describe it as feeling like the tip of your nose with a dimple in the middle — weird, but okay. If you’re interested in seeing some real photos of cervixes, you can browse the Beautiful Cervix Project!
Cervical cancer is a type of cancer that originates in the cervix.
Cervical cancer is preventable!
The vaccines Gardasil and Cervarix can prevent most cases of HPV, the virus that causes 91% of cervical cancer cases. And a test called a Pap smear can detect abnormal cells long before they become cervical cancer.
When you get a Pap smear, a healthcare provider uses a swab that looks like a small mascara wand to collect some cells from your cervix (here’s a helpful diagram). Pap smears themselves aren’t generally painful, but they do require the use of a speculum to hold the vagina/front hole open, which can be uncomfortable. Pap smears can catch potential cervical cancer cases before they have a chance to develop. If the test discovers precancerous cells, those can be removed through fairly simple procedures in a doctor’s office or clinic. So, when it comes to cervical cancer, prevention is key.
Everyone with a cervix can start getting Pap smears starting at age 21. From ages 21-29, the American College of Obstetricians and Gynecologists (ACOG) recommends a Pap smear every three years. (If you get an abnormal result — meaning the test found possibly precancerous cells — your doctor may recommend that you get Pap smears more often.)
Starting at age 30, you can keep getting Pap smears every three years, or you can get tested for HPV, with or without a Pap smear, every five years. (An HPV test still involves a pelvic exam and swabbing of the cervix — they just run a different test with the swab.)
Vaccines against HPV are recommended for everyone, regardless of sex assigned at birth or gender, starting at age 11. They’re most effective when people get them before becoming sexually active, but any vaccine is better than no vaccine. If you weren’t vaccinated when you were younger, the ACOG guidelines say you have until you’re 26 to catch up. After that, you and your doctor can decide if it makes sense for you to get vaccinated.
Queer people have higher rates of cervical cancer
It probably won’t come as a surprise to know that national surveys and cancer registries aren’t great about asking people about their sexual orientation and gender identity. This means that we don’t know a whole lot about queer people’s experiences with cervical cancer. The data we do have, though, show that lesbian and bisexual cisgender women in the US have higher rates of cervical cancer compared to straight women.
The differences are shocking, actually: while 14% of all adult women in the US who get cancer get cervical cancer, 17% of lesbian women and 41% of bisexual women do. Lesbian and bisexual women also have worse long-term health after surviving cervical cancer. [Editor’s note 3/14/22: Originally this paragraph stated “while 14% of all adult women in the US get cervical cancer, 17% of lesbian women and 41% of bisexual women do;” that is incorrect, and we have since corrected that sentence to reflect the accurate statistic.]
We don’t really know anything about how many nonbinary folks and trans men get cervical cancer. But these groups tend to have higher rates of other negative health conditions, so the same trend may exist for cervical cancer, too.
Why are there such big differences in cervical cancer rates?
Some of it could be due to behavior. HPV, the cause of most cervical cancer cases, is spread through sex. Bisexual cisgender women are more likely to have penis-in-vagina sex without a condom compared to straight women, so they’re more likely to be exposed to HPV. Cervical cancer is also linked with smoking, and queer women are more likely to smoke than straight women.
But behavior differences don’t tell the whole story. Since vaccination and regular Pap smears are key in preventing cervical cancer, we also have to understand queer people’s access to those services.
Studies overwhelmingly show that queer cisgender women, nonbinary folks AFAB, and trans men are much less likely to get regular Pap smears than straight cisgender people. The findings are less conclusive about HPV vaccination, but one national study found that, among cisgender women, Black lesbians had the lowest vaccination rates of any group, followed by white lesbians and Black bisexual women.
Why are queer people less likely to get HPV vaccines and Pap smears?
It’s not because we’re less conscientious or motivated about maintaining good health. Queer people face a lot of barriers to good healthcare, and cervical cancer prevention is no different.
For starters, queer people tend to be less likely than straight cisgender people to have health insurance. Also, not every state has laws or policies guaranteeing equal access to care for queer populations. Queer people are less likely than straight cisgender people to get regular checkups or have a personal doctor. We’re also much more likely to avoid or put off care because of the cost.
Other barriers have to do with the way queer people are treated in healthcare settings. Healthcare providers may be outright discriminatory, use disrespectful language, fail to acknowledge our queerness, or perpetrate other microaggressions against us. And queer people often have to educate their providers about their healthcare needs. Queer people of color are even more likely to face unfair treatment in healthcare.
When it comes to cervical cancer specifically, many healthcare providers are misinformed. Providers may believe queer people don’t need cervical cancer screening, and they’re much less likely to refer queer patients for Pap smears. Some doctors actually tell their queer patients that they don’t need Pap smears. HPV vaccine marketing and even well-meaning educational organizations may emphasize cervical cancer prevention for straight cisgender women, leaving nonbinary folks AFAB and trans men unaware that they even need HPV vaccination or Pap smears.
So what’s a queer with a cervix to do?
First, find a doctor (or nurse practitioner, physician’s assistant, etc.) and get a checkup. Then keep getting checkups — visit your healthcare provider for a well-patient visit every year. Having a trusting relationship and good communication with a healthcare provider who knows you is an important aspect of getting quality care.
There are resources and databases online that can help you find a queer-affirming provider. Planned Parenthood and other free or sliding-scale clinics can be an option if you don’t have health insurance or can’t afford copays.
If the first doctor you go to is a dud, don’t give up. It can be disheartening to deal with awkwardness (at best) or discrimination (at worst). But not every experience will be like this, so don’t take one bad experience (or two, or three) to mean that quality healthcare isn’t in the cards for you.
Second, if it’s safe to do so, come out to your doctor. This opens the door for conversations about sexual and relationship health. I know it can be hard, and your doctor may handle the information awkwardly, but it’s an important step in establishing that trusting, communicative relationship.
Third, show up to your appointment with questions. It can be helpful to write down your questions beforehand. Think about what you want to know. Are you due for a Pap smear? Are you up-to-date on your vaccinations? Should you get screened for STIs? Literally write your questions down on a piece of paper or a note in your phone. Then, when your doctor answers them, take notes. Repeat the information back to your doctor to make sure you understand. You deserve to take up space at the doctor’s office and to make use of your doctor’s time.
Queer people face higher rates of cervical cancer and lower rates of vaccination and screening, and we deserve better. Armed with the facts, you can advocate for your wellbeing and get the preventive care you deserve.