Too many of us have stories of doctors not believing our pain, years spent being misdiagnosed, and struggles in accessing the care we need (from exorbitant costs to previous intimidating appointments). Often, health care obstacles are directly tied to medicine’s gender bias, as well as stigmas relating to our race, ethnicity, sexuality, non-binary gender identity, age, and income. In our series, Pain Today, we are highlighting these stories through personal and reported essays, hoping to empower each other to advocate for our health in a way that much of the medical community does not.
As daunting as it may be, the Pap test (or smear test as it’s known here in the U.K.) is paramount to the prevention of cervical cancer—the fourth most prevalent cancer in women worldwide. This type of testing has prevented between 105,000 and 492,000 cases of cervical cancer in the U.S. over the last 30 years, and at least 2,000 deaths from cervical cancer in the U.K. each year. But not everyone goes to the gynecologist for these preventive screenings—so what is it that’s stopping them? What has caused screening rates in the U.K. to drop to their lowest in two decades?
I went to my first cervical screening last year when I turned 25. Despite feeling anxious about the process, I was assured by my female friends and family members that it would be “quick and pain-free” and arrived at the doctor’s office feeling fairly relaxed. But my first screening didn’t go as planned. I watched in horror as the nurse filled a test tube with my blood after three failed attempts at taking a cell sample, before revealing that I had a “downward-pointing cervix” in an alarming tone—without adding that cervical position isn’t typically a cause for concern.
When later discussing my unpleasant and intimidating Pap smear with other women, I was surprised to learn how many had also had a difficult experience.
Ellie from Vancouver recalls having a Pap smear wherein the nurse appeared to be stressed, muttering about not being able to get a good swab. “She became increasingly flustered, before saying something along the lines of ‘Oh, that will have to do.’ I then got a call to say that my results were inconclusive (which sent me into complete panic) and I had to go back in to have it redone,” she said. “My second test also came back inconclusive, so I had to go and basically have a camera put inside me. Luckily that doctor was really friendly and told me there were no issues. Apparently, I have a ‘shy cervix’ and therefore it was hard to reach to get a swab.” If nurses had been more communicative with Ellie about what could have caused an inconclusive result, this experience might not have been so frightening.
Sinead from Northampton was 27 when she went to get her first Pap smear. Like many women, she was nervous about revealing all to a total stranger at the gyno, but after a boyfriend’s cousin got diagnosed with cervical cancer, she decided it was time to get the test. And it was good that she did. Sinead’s smear results came back with CIN 3—a severe cell abnormality. “I was terrified,” she said. “Even though everyone told me that didn’t mean I had cancer, I was sure I did.”
Sinead was sent to a hospital for a colposcopy, where she was reassured by a team of nurses. Although she experienced some discomfort, the experience was a lot less scary than she anticipated. “A few weeks later, I had a letter in the post telling me that my biopsy had shown CIN 3 cells, and that meant that they wanted me to have a treatment. There was an appointment date on the letter for a few week’s time to return to the hospital [without any further detail]. I was stressed and couldn’t understand why I wasn’t being treated as a priority,” Sinead says. “But when I went back, the consultant was really patient with me and explained that the point of smears is to catch the warning signs and treat it before it develops. There may have been abnormal cells on the surface of my cervix, but those cells had not penetrated the cervix.”
Seeing this information in the same letter that told her to return for a treatment could have made the situation less scary. It’s clear that bad experiences have led many women to feel anxious or apprehensive about returning for their next screening, and some have even decided to not go back at all.
Helen, who avoided smear tests for nearly 10 years, now raises awareness and offers peer support for women who find cervical screening difficult through Twitter account At Your Cervix. Helen was raped and physically assaulted by a stranger in 2007, leaving her traumatized and causing a severe mental breakdown. Since then, she has struggled with intimacy, both in relationships and at the doctor, which includes Pap smears and gynecological exams. “This is because of the nature of the examinations, the invasiveness, being exposed to a stranger, and just on a really basic level, having my genitals touched, let alone something inserted,” she says.
Helen has PTSD and experienced flashbacks and nightmares after her last Pap smear. “Last month I went for my [screening] which unfortunately they were unable to carry out, so I have to have it done at the hospital next month. I get through it with diazepam and a friend coming with me and meeting the staff beforehand,” she explains. “I do believe it is important to be able to be examined when necessary, which is why I’ve created At Your Cervix. We are raising awareness of the barriers people face and offer peer support to anyone who needs listening to.”
A recent study carried out by U.K. charity Jo’s Cervical Cancer Trust found that “81% of young women who don’t go to Pap smear appointments feel embarrassed, 71% feel scared, and 75% feel vulnerable at the thought of going,” says Kate Sanger, Head of Communications and Public Affairs. “Body image issues also play a part in preventing women from attending, with 35% of young women reporting they are embarrassed to attend because of their body shape.”
Kate also says that a lack of available appointments with general practitioners and reduced availability at sexual health clinics present significant barriers, with 1 in 10 women only being offered appointment times that they couldn’t make for various reasons. “Some groups of women, such as those living with a physical disability, or women who have experienced sexual violence, are further disadvantaged by the current delivery of the program,” she added.
There are many barriers to women accessing #CervicalScreening incl having a history of trauma, and/or sexual violence, mental health issues, disability where physical access is impossible & more.— AtYourCervix (@AtYourCervix_x) May 3, 2019
Let’s recognise these and support women if they choose to have it done.#smeartests
But in spite of the hurdles women face to attend cervical screenings, they are vital—preventing approximately 75% of cervical cancers from ever developing. Screenings detect cell changes before they have the chance to become cancerous, saving thousands of lives every year.
“The experience was pretty stressful for me,” says Ellie. “But I know it’s so important to get checked so I’ve always gone to future appointments. The next time I had it done, I had an amazing nurse who was chatty and friendly and let me explain the frustrations of my first couple of experiences, as well as giving me tips to make it less uncomfortable and increase the chance of them getting a full swab.”
“I am not due to go back for another smear until 2020, and when I get my letter, I will make sure I book it in with a smile,” says Sinead. “It saved my life. If I hadn’t had gone when I did, I would have had a very different experience. In conclusion, YAY SMEARS!”
Organizations across the globe are doing their part to try to increase the numbers of women attending their cervical screening appointments. Here in the U.K., we have Childcare.co.uk, which offers mothers an hour of childcare free of charge to allow them to attend their Pap smear appointment. Treatwell, a hair and beauty booking service, joined Public Health England to launch the Life Saving Wax initiative. As part of the program, salons will direct clients to resources where they can find further information, support, tips and advice on how to make screenings more comfortable, as well as offer information to share with friends and family.
According to data from the Annals of Internal Medicine, 89% of the general U.S. population report having been tested for cervical cancer in the last five years. According to data from the U.S. Preventive Services Task Force, that number decreases to 23.1% for women without insurance, and to 25.5% for women without a regular clinician. However, unlike in the U.K., there is no official screening registry in the U.S. Instead, statistics are based on self-reported surveys. Dr. Mona Saraiya from the Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention (CDC) says self-reported surveys are known to overestimate screenings, which may be the reason screening rates appear much higher in the States.
The higher screening rates in the U.S. may also be partially due to the HPV test existing alongside the Pap test since 2002. According to Debbie Saslow, Managing Director at HPV & GYN Cancers for the American Cancer Society, this has “improved the quality and effectiveness of screening.” In the U.K., HPV testing is currently being rolled out, which Kate from Jo’s Cervical Cancer Trust says, alongside regular cervical screening, provides “a fantastic weapon against” cervical cancer.
In the majority of cases (99.7%), cervical cancer is caused by high-risk HPV—an extremely common infection that is spread through skin-to-skin contact of the genital area. In the new program, samples will be tested for HPV first. If a woman does not have HPV, then their risk of cervical cancer is extremely low and no further investigation is needed. If they have HPV, then their sample will be analyzed for any cell changes and treatment will be offered if needed.
“A further innovation we are calling for is HPV self-sampling, so women can collect their own samples at home,” explains Kate. “This method of testing would allow many more people to have cervical screening who currently find it difficult or impossible,” she says, adding that urine testing for HPV is also currently being trialled with “very promising” findings.
In the U.K., the NHS cervical screening program is available to women ages 25-64. All eligible women who are registered with a general practitioner automatically receive an invitation to a screening by mail. Women ages 25-49 receive invitations every three years, and women ages 50-64 receive an invitation every five years.
In the U.S., the current recommendation is for women ages 21-29 to get screened every three years with the Pap test. At age 30, women should switch to getting screened every five years with the HPV test plus the Pap test (called “co-testing”) until age 65. It is also acceptable to continue to get the Pap test alone every three years. Last year, the U.S. Preventive Services Task Force added screening every five years for women 30-65 with just the HPV test as a preferred approach.