Georgia Rivers and I have created a zine for trans+ Autistic people to be informed on their rights when thinking about, or engaging in cervical screening in the UK.

The zine can be found here at Heyzine. And now available in print with a sliding scale price. Get your copy at Penfight.

Text from the zine

Who are we?

Hi! I’m Ge (they/them). I’ve just finished a PhD in trans+ experiences of cervical screening – some of what’s in this zine comes from my research. Ge can be found on ResearchGate and Bluesky.

Hey, I’m Katie (they/he). I am a community researcher on the Trans Aware Cancer Care project. I am doing my PhD on trans+ Autistic adult’s experiences of health and social care. Katie can be found on ResearchGate and Bluesky.

We are not medical practitioners. If you feel something is wrong talk to your doctor.

What is cervical screening?

Cervical screening is a test which detects early changes in cervical cells which can become cancer.

Detecting early changes in cells means that cervical cancer can be prevented. If cancer is already present, detecting this early means that treatment can start sooner.

Starting treatment early limits the spread of cancer to other areas, and ongoing physical or psychological symptoms such as bladder dysfunction and dyspareunia (pain during sex).

This means that regular cervical screening can prevent cervical cancer, and improve the quality of life for cancer survivors by detecting cancer early.

What does screening involve?

• Cervical screening involves inserting a speculum to separate the vaginal walls, then using a small brush to collect cervical cells
• The sample is then sent to a lab to be tested for HPV (which can cause cervical cancer) and checked for abnormal cell changes using a microscope.
• If abnormal changes are detected, you will be invited for a colposcopy to find out whether the changes are cancerous, then treatment can begin

Who can attend screenings?

• Anyone with a cervix aged 25-49 should attend screening every three years, or every five years between age 50-64.
• People aged 65+ can also be invited if they have not been before, or if their most recent test was abnormal.
• Your GP should send an invitation letter when the cervical screening test is due. This letter asks you to make an appointment.
• Currently, only people registered as female get invited to screening. This means that trans people with a cervix can be missed out.
• This means that trans people who are registered as male might not recieve an automatic invitation. You can ask your GP to add you to the invitation list, or remember to book one yourself.
• Even if you have had the HPV vaccine the NHS recommend going for cervical screening.
• Cervical cancer doesn’t always have symptoms so it’s important to get tested regularly.
• People of all genders are entitled to the same medical care when it comes to cancer prevention, diagnosis and treatment.
• If you think you need a cervical screening but you have not been invited get in contact with your doctor.

What to expect

1. The medical practitioner will ask some questions about your health, including whether you have had a HPV vaccines and your sexual health
2. They will turn around or leave the room for you to take off your bottom half clothes and lay down on the bed
3. The practitioner will ask for your permission to continue and should tell you how you can pause the procedure.
4. The speculum will be inserted (this may feel cold). This will be used to gently separate the vaginal walls.
5. The swab will be inserted, and moved around the cervix for a few seconds. This may also feel uncomfortable and you may feel pressure or pain. This is usual but not pleasant.
6. The swab and speculum will be removed and you will be able to get dressed
7. After you are dressed, the medical practitioner will tell you how long to wait for your results. They may also tell you what happens next.
8. You, or the person who accompanies you, can ask questions.
9. You may feel discomfort afterwards and there may be some small bleeding (you could take a pad just in case).

Screening at a trans+ person

• Cervical screening can be more painful for people who use testosterone.
• Health professionals can have negative ideas about trans+ people or may be well meaning but not have much knowledge.
• The health system isn’t set up thinking of trans people for example, you might not get automatically invited for screening if you are registered as male.
• Hopefully you will be screened by an ally, but remember that no matter how you are treated, you are valid and loved and deserving of equal care.

Screening as an Autistic person

• Some autistic people feel pain differently to allistic people, so screening may feel more painful
• Autistic people sometimes show pain differently to allistic people, so the health practitioner might not realise you are in pain. Speak up if you can!
• Practitioners have varied understanding of Autistic communication and needs.
• Macmillan do easy-read booklets of information.
• People who can get cervical cancer are women, trans men and anyone assigned female at birth

Screening as a trans+ Autistic person

• Masking your gender and Autistic needs and behaviours. It is exhausting!
• Gender dysphoria – being in a “Women’s Health” setting.
• Sensory issues in the waiting room and procedure room.
• Communicating about your trans needs name, pronouns and how to stay safe can be difficult.
• Needing warnings when being touched, especially in personal areas.
• Getting yourself prepared with scripts can turn to overthinking!

Things to think about

• Make a list of things that worked well this time and what you might need for your next screening.
• Does your setting do a trans-inclusive session?
• Plan something nice for afterwards. Something with no stress and no need to mask.
• Book a double session so you have more time to ask questions and process.
• Remember you can stop the procedure at any point, whether this is to pause and try again or to come back another day or with another clinician

what can i ask for? before

• When booking, you can ask for a double appointment to give you more time to feel comfortable before, during or after the procedure.
• You can ask to look at the tools they will use, whether this is during the appointment or in a different appointment before.
• You can ask for a female practitioner and a health service chaperone in the room.
• Having experienced sexual assault/abuse might make screening more difficult. You can share this with your practitioner who can reassure you and work with you to find something that might help you to feel more comfortable.

What can i ask for? During

• A smaller speculum and lubrication.
• A plastic speculum
• Time to process information.
• Help on and off the bed – many can be made lower or higher as needed.
• For the procedure to pause or stop at any time.
• You can ask as many questions as you need, before during and after the appointment
• If the health professional makes you feel uncomfortable or unsafe, you can end the appointment and request a change of clinician when you rebook.

What else might help me feel more comfortable?

• You can take someone with you in the room such as a partner, friend or support worker.
• Headphones, earphones or other sensory aids
• You can take a comfort object, fidgets or anything else which calms you
• You can wear your sunflower (invisible disability) lanyard.
• There are some trans specific clinics that do your cervical screening in London, Brighton and Leeds. check if there is one accessible to you

HERE’S WHAT PARTICIPANTS IN GE’S RESEARCH HAD TO SAY:

Georgia’s previous research in the area can be found for free here.

• Having a health professional who was knowledgeable about trans+ health and was reassuring helped participants to feel more comfortable.
• Some participants experienced transphobia and/or ableism
• One participant booked their screening appointment for the same time as getting their testosterone injection to balance their dysphoria
• Some participants shared difficulties relating to sensory needs, such as loud noises and bright lights in hospitals, so they took headphones, sensory items, or a trusted friend as a distraction.
• One participant wrote “instructions” which included what worked for them in previous screening appointments

Katie’s experience

I had a female practitioner who asked if I wanted a chaperone, and with my permission, she locked the door. She asked whether I’d had HPV and the HPV vaccine, and if I was HIV+.
I took off my underwear and got on the bed in private. All my winces and odd noises throughout the procedure caused the practitioner to stop and check that I was okay. It did not hurt me.
The brush tickled and scratched inside for about five seconds.
Once my specimen was taken, I was left alone to get my clothes back on. I asked some questions about what happens next.
We are all built differently. There is no shame in how you or your body responds to this procedure.

Resources

OUTpatients LGBTIQ+ Cancer Charity

The Eve Appeal – The Gynaecological Cancer Charity

Macmillan Cancer Support