A tale of two cervices
A tale of two cervices
Anonymous
“We can’t insure you”.
“You can’t give blood”.
These are two things I didn’t expect to hear last year, and with each of them I was completely baffled. How can a few cells on my cervix mean my mortgage is affected?
To answer that we go back to 2009, and the HPV vaccination, termed the ‘cervical cancer jab’, had just been introduced the year before. There was a snazzy ad campaign, with girls* wearing pink and purple stickers on their arms to show they’d had their vaccine. There was no doubt I would get mine, my family has always been very pro us having all the protection we can get. Although I didn’t fully understand the mechanics, I knew the jab could protect me from developing cancer, something which would sadly hit our own family in 2011, when my father battled the disease.
I was scared at first, and had to have two tries at getting the first of the three jabs, however, once I’d had that first one, which I barely felt, I was proud of myself, in that cold gym hall, surrounded by other girls and nurses. I was part of this big campaign, of those cool girls with stickers on their arms. Although we soon learnt not to put the sticker on the actual arm you got the jab in, lest someone came up to punch you directly on that spot (yay teenagers).
I didn’t give much thought to that vaccination again, except to encourage others to get theirs. When the letter inviting me to my cervical HPV screening came through my door at age 24 and six months, at first, I didn’t even connect the two. This is probably because of the clever marketing campaign that focused on cervical cancer protection, rather than protection against HPV. I think this was more for the parents who had lived through the HIV crisis, and had internalised the blame that was attributed to those contracting a virus through sex. There were still girls in my year who were not allowed to have the HPV vaccine, however, because their parents thought it would encourage them to have sex, much like how having the tetanus jab encourages people to rub open wounds on rusty nails in the garden.
The leaflet that came through my door with the letter was very informative, they said they’d test my smear first for HPV, and then if HPV is found, they’d test for abnormal cells. They gave the rates of the different outcomes from your screening, a neat flow diagram showed that of 100 people, 87 have an HPV negative result, and of those who are positive, only 4 are referred on to the colposcopy clinic (further testing). I was sure I would be in that 87%, after all, these statistics were for unvaccinated people surely? I was vaccinated in the first years of the HPV vaccine rollout, so I assumed the percentage of negative results would be much higher in years to come. You can see where this is going.
With unerring confidence, I attended my screening, which was straightforward and painless, chatting to the woman while she rubbed a cotton bud over my cervix, feeling informed by the process and the possible outcomes. A few weeks later I received my results: high risk HPV and abnormal cells. What? I had so many questions:
“Do I have cancer?”
“Did the vaccine not work?”
“Have I given this to my partner?”
“Do I need to tell past partners about this?”
They invited me to a colposcopy clinic. A colposcopy(1), not to be confused with a colonoscopy(2), as I frequently mispronounce it, is where someone looks at your cervix with a colposcope- a big camera, while they hold open your vagina with a speculum. I read up extensively on this procedure, and felt confident before going to my appointment. They would look at my cervix, take some pictures, and I could leave. They mentioned sometimes a biopsy is taken, but that this “is a mild scratch”. I didn’t expect them to take a biopsy. Indeed, I expected to go in and them say “actually there’s no abnormal cells, the smear test must have been wrong, sorry for wasting your time.”
But they did take a biopsy. They asked me to cough while they did it, and a small, sharp pain hit me, as I saw blood, magnified 100 times, fill the screen showing the colposcopes view. I felt lightheaded, sick, and suddenly hot all over, much like one time when I gave blood and they had to lie me upside down for 15 minutes. The nurses were lovely and made sure I was okay, but I was shocked, shaken, they said I wouldn’t feel it? They sat me in a little room full of leaflets and told me to wear pads for the blood, not to have sex or use tampons, and to wait a few weeks for my results. I got a biscuit and a cup of coffee, but still felt shaky driving home.
I waited the number of weeks they told me it would take for the results to arrive, and called when they had not been delivered. I was told by the receptionist that the biopsy results were back, but that she couldn’t tell me them. I had to wait for someone else to read them, and that person was on holiday. Two more weeks of waiting and they came though: CIN1. This means that approximately one third of the cells are abnormal, and isn’t usually any cause for alarm. They told me to go back for a smear in 12 months.
Back in the doctor’s office, another smear, another letter saying I had abnormal cells and I’d need to go to the colposcopy clinic.
This time was both better and worse. Worse because I knew what was coming, I was anxious, nervous, and afraid of what I would feel. Remembering how I was after the last time, I asked my partner to drive me, and wait in the reception for when it was finished. I didn’t feel faint this time, but I cried. I held the nurse’s hand and cried. I wasn’t sure why, maybe it was just the indignity of having my legs up and splayed apart while a woman with a huge telescope took a chunk out of me. Maybe it was the expectation of pain. It didn’t hurt as much, and I was led to a room of leaflets afterwards, where my partner met me and hugged me as I drank water and had a biscuit. Again, I was told, wear a pad for the blood, don’t have sex or use tampons, wait for your results. I went home and had a Baileys in bed.
The results came back quicker this time: CIN2. That means two thirds of the cells are abnormal. It only goes up to CIN3 before the word ‘cancer’ starts appearing, so I was understandably worried. The letter said they would have a meeting to decide what to do next. I didn’t know when this meeting would be, only that I would hear about the result of it once it was done.
Around this time, my partner and I started looking for houses. This was a very exciting time, and we got a great mortgage broker who talked us through everything. “You’ll need to get life insurance” he said, “it’s simple enough” and gave us a number to call. We gave all our details to this service, who would look across hundreds of life insurance policies to find you the best one. They asked everything from details of our parents’ health, to how much we drank, and it came back with a very clear answer: no. Not because of my dad’s cancer, my partner’s bad back, or any history of mental health issues, no, the thing that was stopping us from getting insurance was these cells on my cervix. We tried again: through our banks, through comparison websites, even clicking on the adverts where they say they’ll insure anyone. All nos. I was stopping us from getting the best mortgage deal we could. What is ironic is many of these insurers didn’t provide cover for ‘matters of the womb’ anyway, including, yes you guessed it, cervical cancer.
This is where the worry really started, not so much because I was worried for my health, but the old misogynistic guilt of “if I hadn’t had sex, or had less sex, this wouldn’t be happening”. I knew deep down that this isn’t how it works, that over 80% of people get HPV, and you can’t blame yourself or anyone else for having it. But I did: I could be the reason we either didn’t get a mortgage, or had to spend more on one.
I wanted to do something good, something that meant I was useful to other people, so I looked to start giving blood again. I’d taken a break while I was on some medication that was incompatible, but now I could start again. I double checked the website before going, and there was nothing to say that abnormal cervical cells meant you couldn’t give. But when I arrived, the nurse looked down my form and saw ‘ongoing hospital evaluations’ was ticked. I explained the situation to her, how I had CIN2, and she told me the same as the insurance lenders: no. Her exact words were “we can’t take your blood because it might have cancer in it”, cheery. So now I was walking around, full of my cancerous blood, with my infected cervix full of abnormal cells; let’s just say I wasn’t feeling so hot right then.
My worry and anxiety slowly turned to anger, however. HPV causes cancer in men too, and yet there is no equivalent screening that men go through which denies them life insurance. I might have kids in a few years, will these cells stop me getting life insurance that could protect my kids if I get hit by a bus walking home from work? Why didn’t they give me more information about giving blood, and why I couldn’t? Why was I not offered a smear before age 24.5, what if it had been worse and it was too late by then? Why do none of my male friends, and a significant number of my female friends, have no idea what I am talking about what I mention smears, cervical cells, or colposcopies? Why did they tell me the biopsy wouldn’t hurt? Why was no pain relief offered?
On that last one I found an article that found that asking women to cough was just as effective as pain relief, I think I’d prefer to have the choice. Women report pain of between 6 and 10 during cervical biopsies, with a score over six showing a need for pain relief. In most places in the US, anaesthetic is used during cervical biopsies and IUD insertion, despite me not having it for either of these in the UK. My IUD insertion is to date the worst pain I’ve ever experienced.
Anyway, the decision came through, instead of treatment I should come for another colposcopy in six months, to see if the cells got better or worse. I started wondering if there would be anything left of my cervix after all these chunks have been taken out of it. This time they took two biopsies, and although I instinctively crossed my legs together when she mentioned the word biopsy, it went smoothly, not hurting at all this time. I got to have a closer look at my cervix on the screen after the biopsy. The blood didn’t look so scary this time, and she pointed out a large white patch on the top of my cervix, and explained that these were the abnormal cells, she used the term ‘pre-cancer’ which sounds scarier than it is. It looked like the pictures I’d seen online(3), and I was reassured that it didn’t look nearly as bad as the pictures of cancer. She told me I could choose to have the cells removed if I wanted, something I wasn’t aware I could ask for, but that she recommended waiting to get the results of the biopsies, and if the cells hadn’t progressed, to see if they went away on their own first, as treatment involves putting me to sleep (have a general anaesthetic), and damaging the cervix in the process. I didn’t need to sit in the leaflet room that time, and I wasn’t even offered biscuits, I just went home and had a nap. The results came through “indeterminate”: meaning another biopsy in six months.
We ended up getting a good mortgage deal without life insurance in the end, although I still worry about what will happen if I still have these cells when I have kids. I look back to that girl in the gym hall getting her first HPV jab, and I am so glad she mustered up the courage to have it. The HPV vaccine has been improved since then, offering protection against more strains, including the strain that causes genital warts. It is also offered to boys and men, and will hopefully reduce rates of cancer across the board. I am so grateful for the healthcare I have received, but also angry at the barriers women face in their gynaecological health. I have no doubt that if we were taking a chunk out of someone’s penis, they would not have been asked to merely cough.
*I use gendered language in this piece to reflect my own thoughts and experiences at the time. Men and non-binary people can of course have cervices, and not all women have a cervix.
(1) www.nhs.uk/conditions/colposcopy
(2) www.nhs.uk/conditions/colonoscopy/
(3) So many women don’t know what this, very significant, part of their body looks like. The Beautiful Cervix Project aims to educate people, and has galleries of images: www.beautifulcervix.com
