The At-Home HPV Testing Trial: Why I’m Here For It
This is a photo of me taken on 25 July 2020. I was celebrating getting the all-clear that I had been chasing for almost five years. It was just a typical Saturday when I got the letter with the latest results of yet another biopsy on my cervix. Negative.
I’m not gonna lie, I cried. Honestly, I’m tearing up now as I write this, even though it’s been nine months, and I’ve had another (all clear) smear test since. Sometimes, I need to pinch myself that it’s over. I can’t even begin to explain the relief, the endless back and forth of appointments, colposcopies, and biopsies. And it’s over.
But now I’ve spoiled the ending; let’s go back to the beginning.
Around the middle of 2015, a few months before I turned 25, I got the dreaded letter inviting me for my first ever smear test. I put it off for a little while and let it hang out in the back of my mind until I finally booked in for my smear test in April 2016. Why was I dreading it? Why did I put it off? I wasn’t expecting anything to be wrong with me, I just didn’t want to make awkward small talk whilst someone looked inside my vagina.
It started with HPV. I didn’t even know what HPV was. I’d vaguely heard about it because I knew the girls in the year below me at college had to get a jab for it. However, it wasn’t mandatory for me, and I hate needles. So, it was a no from me. Oh, if I could go back, would I? Maybe? Or maybe this has made me who I am today.
HPV or Human Papillomavirus is a virus, there are more than 100 different types of HPV, and some can cause cancer. Most of us will have HPV at some point or another, but the great news is that most people will never know, their immune system will fight it off, and within two years, they’ll naturally have cleared it from their system. For those of us whose immune system doesn’t fight it off, this virus can turn into cancer. It’s very much seen as a virus that impacts women, but actually, it’s very non-discriminatory. Anyone can get cancer from HPV.
My first ever smear test revealed that I had HPV and highly abnormal cells grade three. I confided in a friend at work who was a year older than me, and she told me not to worry, that she had similar results on her first smear and they’ll just get rid of them.
From my smear test, I was referred to the Women’s Health Clinic at Lewisham Hospital for a colposcopy. I went alone the first time, and an incredibly kind nurse held my hand whilst asking me what my holiday plans were. My legs were in stirrups, and I stared at this Monet-inspired painting on one of the ceiling tiles, trying to pretend that I could make easy-breezy conversation. The colposcopy is a wand with a camera that looks around your cervix and lower womb; my cervix was then flooded with a type of dye. The doctor explained that the cells that were abnormal and potentially cancerous would light up thanks to the dye. And my cervix lit up like fireworks night.
The next few years became a wash, rinse, repeat type scenario. Endless appointments spent staring up at that Monet-esque painting; sometimes a nurse would ask me where my name came from, other times they’ll ask about my holiday plans. On and on it went. These gentle attempts at small talk to distract from the wand and then the ‘cough for me, you might feel a scratching pain’. I will never forget the kindness of the team at Lewisham Hospital.
Ultimately, my immune system wasn’t able to fight off the HPV, and it progressed into Stage 1 Cervical Cancer. I was/am incredibly lucky; I had Stage 1A, it was entirely confined to my cervix. Because of my age and my child-less state, everyone was keen to save as much of my cervix as possible. Thanks to this, I should still be able to conceive naturally.
Weirdly, it took a long time for me to realise or comprehend the impact and if I had decided whether or not I wanted tiny humans. When I first started this process, I was 25, I had just started seeing Scott, my partner, and I was halfway through my master’s degree. Tiny humans weren’t on my list yet, but as the years went on, I was just so caught up in the moment and hoping that this would all go away. How could I think about the future when my present-day was so stressful? After my final treatment, the nurse said to me, when you start trying for children, you’ll need to let your team know as you’ll need to have some stitches put in as you don’t have a lot of cervix left now.
And I’ve just kind of carried this piece of information around with me. Not really knowing what she meant, just imagining that my future tiny human might just fall out otherwise. (It’s ok, I’ve had a Google, I know now).
I know so many people who are significantly behind with their smear tests, and there’s a variety of reasons. It’s an incredibly intimate procedure, and with no symptoms or physical reason to go, I absolutely understand how it’s easy to let it slide and slide and slide.
I’m not going to lie; cervical smears are uncomfortable and fairly awkward. Like on a scale of 1-10, I’m gonna put it up there of like an 8/10. That’s without any trauma around or fear around being touched or any health challenges. And I don’t have the answer; all I can tell you is my experience and how important I think going for your smear test is. But I can’t tell you to go. In the same way, there was no telling 17/18-year-old me that the HPV jab was more important than my fear. You’re the only person that can decide for you.
This whole story is just a lead up to say that I was pleased when I saw the news last month that NHS England has announced a trial, ‘YouScreen’, where at-home HPV testing kits would be beginning. The study is a partnership between the NHS, Public Health England, and King’s College London and will see over 31,000 people offered at-home HPV testing kits to attempt to combat low attendance for smears.
According to the NHS, London has the lowest cervical screening coverage in the country, so the home tests are being rolled out through 166 GP practices to increase screening for HPV. The swab tests will be either posted or given out by a GP to women aged 25-64 years who are 15 months overdue for a check. Plus, the tests will also be offered to women who attend a GP appointment for a different reason and are at least six months overdue for a test. The completed swab test can then be directly returned by post to the NHS Cervical Screening Programme’s London laboratory, with results sent back to GP surgeries.
Dr Anita Lim, from King’s College London, who is leading the study, said:
Self-sampling is a game-changer for cervical screening. We know many women aren’t coming forward for screening, and almost half of women in some parts of London aren’t up to date with their cervical screening. It’s an intimate procedure, and a variety of barriers can stop people from attending, even though it can be a life-saving test. This simple and convenient swab means it can be done in the privacy and comfort of your own home.
Women who don’t come for regular screening are at the highest risk of developing cervical cancer, so it is crucial that we find ways like this to make screening easier and protect women from what is a largely preventable cancer.
I saw some hilarious responses to the news. I replied to a friend’s story asking if she had to use her own speculum, that the kits probably provide everything needed in them.
For me, this recent news has given me the space to think about how I feel. In the 8/9 months since my all-clear celebration in the brief respite of lockdown restrictions, I’ve not thought too much about it. I’ve ping-ponged my way through the last year, just focusing on getting through one day to another as the sameness consumes us.
Sometimes, I find myself what if-fing. What if I’d had the HPV jab? What if I’d just booked my smear when it first came in? What if those six months could’ve saved me the last 4/5 years of worry, stress, and cervix? And I just have to stop; I am lucky. I am in the clear. I am finally able to move on, to move forward. Tiny humans are finally on my radar and are making their way onto the 2-4 year plan, so dwelling on shoulda/woulda/coulda isn’t going to help me.
I truly hope this trial is a success. I hope the three million people in England alone who’ve not had a smear in the last three and a half years get access to this scheme. I hope it gets rolled out across the entire UK.
This isn’t a cautionary tale or a warning, or an attempt at scaremongering you into going for a smear. This is the testimony of someone who’s made it out the other side and wishes she’d known what she was getting into. This is the review of someone who’s bounced from biopsy to biopsy over the past 4/5 years. I rate it 0 stars. Do not recommend.
So, if this at-home testing proves to be a success, and it saves just one other person going through what I did, I am here for it.
If this is something you’re worried about or going through, please feel free to drop me a DM on Instagram, I can only give you my experience, but I’m always here to listen.
Written by Saloni Chamberlain
Hi, I'm Saloni, loni to most! A native Londoner, I've recently relocated with my partner and our two cats to sunny Weston-super-Mare! I work as a freelance writer and I think I'm generally quite funny. My favourite word is plethora, I've never said it out loud but it's just so fancy written down.
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