In this blog, Dr Lydia Billington, a volunteer for Jo's Cervical Cancer Trust, tells us about her personal experience of attending her first smear test. Dr Paul Cross, a consultant cellular pathologist, describes how the cervical screening programme has changed over the years.

"I went for my first smear test as soon as I was invited in January 2020. There is anxiety surrounding a stranger seeing very private parts of yourself. It’s exposing and embarrassment comes naturally. I was also worried it would be painful. I’d worked on a ward and assisted in many speculum exams and smear tests. You naturally provide reassurance, helping to ease people’s concerns when they apologise for their body hair or for how they may look or smell. Despite this, I found myself worrying and apologising for the same things when on the other side.

My smear went very smoothly. Quick and painless. It was my first smear and I was young, so I thought that it had to be normal. My results letter came through – I had HPV and cell changes, along with a pre-booked appointment for colposcopy. It was a massive shock and I broke down. I wanted to know everything. What type did I have? Who did I get it from? How long have I had it? Will I put my partner at risk? What does it mean for me and the future?

You do feel like it’s your fault. I felt very emotional and, even though I know the science and the facts, you can’t help but blame yourself. The stigma surrounding HPV and its links to promiscuity play into this. It was scary to know that without my smear test, I would not have known I had HPV. Waiting for my colposcopy was horrible. I was anxious that during this time it might have got worse and I couldn’t stop worrying that I could be a 25-year-old with cervical cancer."

The cervical screening programme (often referred to as a smear test) involves multiple healthcare professionals and pathology plays a key role. The cervical screening programme has undergone changes that have altered the laboratory landscape, moving to a human papillomavirus (HPV) primary screening test. Certain types of HPV are associated with nearly all cervical cancer and up to 99.8% of cervical cancer cases are preventable.

HPV primary screening tests for so-called high-risk HPV types. If a high-risk HPV type is identified, a cytology test is prepared from the same sample for examination under a microscope. Cytology staff look at these prepared samples for cell changes, which may indicate pre-cancerous or cancerous cervical change.

HPV awareness is still low and being told you have HPV can be a shock.* For the 15% or so of women and other people with a cervix** who are positive for high-risk HPV, about 1 in 3 will show cellular abnormalities that require referral for colposcopy. A colposcopy is a test that takes a closer look at your cervix and can reveal features suggestive of pre-cancerous changes, and rarely cervical cancer itself.

"I attended my colposcopy and the staff were very kind and put me at ease. We had an initial conversation about what we knew so far. They explained the screening process; they test for HPV first and look for cell changes only if you are HPV positive. They showed me pictures of the different levels of changes and what each would mean in terms of needing a biopsy or treatment, depending on what they saw that day. It was very informative and I felt like I was in knowledgeable and safe hands.

They used a speculum, applied some liquids to my cervix to highlight any changes and then looked closer with a microscope. They are sat within a few inches of you. Feelings of embarrassment started to creep in. I could see what they were seeing on a screen. There was an adrenaline rush as it came into focus and waiting to hear what they’d seen and what might be next. The nurse said my cervix looked healthy and normal and didn't require treatment, but that I was to attend a further smear test in a year."

5.1 million women were invited for cervical screening in England between 2021 and 2022, with around 3.5 million attending for testing. This resulted in 235,223 women being referred for colposcopy. These are staggering numbers, and each sample, each screening test, represents a real woman. This must never be forgotten by laboratory staff, where it can be so easy to do so under the weight of such a large volume of tests.

"I was glad to not need a biopsy or treatment and I also felt reassured that I didn’t have to wait 3 years for my next test. I had my repeat smear test, this time during the pandemic, at the beginning of 2021 and the results were fine. I was HPV negative. Despite this, I will never forget that I once had HPV. I know that it’s something I might get again. It’s something I’m learning not to be ashamed of and I’m almost there. I wish it wasn't seen as such a dirty word."

Further information

* The work of Jo’s Cervical Cancer Trust is key in providing support to women with cervical cancer, as well as undertaking research and providing information for healthcare professionals on patient experience. Detailed information is given in the leaflets provided to all women at screening and organisations such as Jo’s Cervical Cancer Trust run helplines to answer any questions women may have.

** In this story, the term women is used to cover women born with a cervix, a trans man and/or other non-binary person who was assigned female at birth, or a man who has a difference in sex development or is intersex.