Screening uptake has been low for some years. NHS England found three in 10 people eligible don’t go for their screening, even though this is the only way to know if you have HPV. Fears around discomfort during the screening and access issues are regularly cited as reasons people don’t go, despite it being potentially life-saving. It’s not all bad news though — a report shared by Public Health Scotland found no cases of cervical cancer have been detected in the first cohort of women given the HPV vaccine in Scotland in 2008. It was initially brought in just for girls aged 12 to 13 and only provided protection for selected strains. Now, boys can also access the vaccine and more strains are included in it. Though the data is a tad premature, as most of these women will be around 31 years old, it’s promising, and suggests if there are any future cases, the figures will be low. This doesn’t mean we can be lax about attending screenings though.
Dr Aziza Sesay, an expert in HPV and gynaecology, who works with the Eve Appeal, says the NHS hopes to eliminate cervical cancer by 2040 — but we aren’t there yet. “The HPV vaccine is amazing and so far it has been said to be 90% effective and its protection lasts at least 10 years, but it doesn’t cover all of the strains of HPV,” she says. “It’s still very important to attend regular cervical screening appointments when invited. Though the individual risk is much lower compared to not having the vaccine at all, the risk is not completely eliminated.”
Dr Sesay stresses it “can be picked up from the very first sexual encounter, regardless of gender or sexual orientation and it does not have to involve penetrative sex.” It’s often pinned as the “female infection”, as men aren’t tested for it even though they get it too. Last year, a survey by YouGov for the Eve Appeal found that only 5% of people have a good understanding of HPV. “If only 5% have a good understanding about HPV, it’s no wonder they would be quite worried or confused when receiving this diagnosis,” Dr Sesay adds. “This coupled with all the stigma, taboo and misinformation surrounding HPV, exacerbates these emotions.” Some people also worry about disclosing to any partners, but unlike other sexually transmitted viruses, you don’t have to share your HPV status — it’s up to you.
Now, being educated on the subject myself, I know much better than to feel any shame about my past sexual choices. Still, it often takes a lot of self education to get the reassurance that’s needed when faced with a letter that says you have HPV — this has been my experience, along with several R29 readers who are ready to share their stories with you. The more we talk, the better chance we have of removing the stigma around this common, genderless virus.
If you’ve been recently diagnosed and want to know more, Dr Sesay recommends using the free helplines for information from experts that are run by Jo’s Cervical Cancer Trust and the Eve Appeal. The details can be found on their websites.
*Names have been changed to protect identities.
After my first cervical cancer screening in 2021 (when I was 24 — almost 25), my results came via a letter from the NHS saying I was HPV positive, and they found abnormal cervical cells caused by HPV that needed further examination through a colposcopy (a test to take a closer look at your cervix that may include a biopsy). The letter came with a selection of leaflets, and the mention of cancer was written throughout which was very scary. Although the information explained that in almost all cases, it doesn’t turn into cancer, I still read the word cancer and automatically thought the worst and that I must have it. As it was my first cervical screening, too, I thought I could have had it for years and not known.
The anxiety of not knowing more was the worst part. To help with this I read pretty much everything online about the topic and watched videos on YouTube of people who had been through the same, so I knew what to expect, which really helped to take some of the stress away.
I ended up having the LLETZ procedure (as my abnormal cells were deemed high risk), in which a thin wire loop with an electrical current going through it is used to remove the high-risk cells. It only took five minutes and was fine, just uncomfortable. They numbed my cervix with injections so I didn’t feel a thing, but throughout the procedure my legs were trembling quite hard which would have been my body reacting to it. The nurses were lovely throughout.
Initially I was told I’d have to wait 20 weeks to get seen in my area, so I went as an out-patient to another hospital where I was seen the next week, making the entire process through to getting my results two months. I’d definitely recommend doing the same if you’re also given the same waiting time.
I wish I had known it’s actually a lot more common than I first thought. When I first got diagnosed, I didn’t know anyone who had been through it. But I’ve since met a lot of people who have been through similar experiences and some of my friends have also been diagnosed HPV positive, needed to go for a colposcopies or had cells removed. You’re not alone.
I didn’t have the HPV vaccine when it was offered at school. I was scared of needles at the time and because they were doing the vaccinations with everyone else there to see, and I was worried about embarrassing myself in front of my classmates. Also, there was little to no talk of HPV in sex education classes. There had been some discussion about me going to the doctor to have the jab done instead, but I remember there being media coverage of a girl who apparently died after having the vaccine — and that was it, I was too anxious to have it done at all.
I regret this massively. I would encourage any young women who are worried about it to go and get it done, as you can have it up until age 25 for free on the NHS on a catch-up programme. Giving in to my anxieties when I was younger has created a much more stressful situation for myself now, and one that could even end up damaging to my health.
Two years ago I got diagnosed with HPV. I have generalised anxiety and this can sometimes be triggered by things around my health. I discussed it with my boyfriend (we were in quite a new relationship at the time) as I thought he ought to know. Since the diagnosis I’ve had annual smear tests, both of which have come back as still showing HPV but no cell changes. The last time I went I was told that I’d need to have a smear in a year’s time again, and if it’s still showing up that the HPV hasn’t cleared then I’ll need to go to a specialist as a precaution just to check everything’s okay.
It has helped having really lovely nurses doing my smears who have answered any questions I had — much better than searching on the internet for the worst–case scenarios!
In autumn 2020, I saw I had genital warts one day when shaving. I completely freaked out and had a look on Google to figure out what they were, and how to get rid of them. It was pretty obvious to me that they were a result of HPV [two of the 100+ strains of HPV are linked to warts]. A cervical screening later on confirmed my suspicions were correct.
I was very ashamed of the warts and thought that I would absolutely not have sex again until they were gone. I was also quite angry, because I think I know who passed on the virus to me. I know that they say HPV can be dormant in your body for years, but my immune system is weak, and I’d had sex with one person just a month before the warts appeared. It was, bluntly, the absolute WORST shag of my life. Also, I always have protected sex, so I was confused how I got it. After doing some research I read that HPV is transmittable skin to skin, even with a condom. None of this was my fault, it was just bad luck.
As for next steps, I got some drops from a doctor to apply on the warts until they went away (which they did in about two weeks after I started the treatment). I then had a colposcopy a month later to check on the abnormal cells. The following year, they found it had cleared.
As I wasn’t young enough to be offered the vaccine at school when it launched, at 19, I had asked for a catch up course. The doctor should have said yes, as you can catch up for free before 25, but he sent me away. I wish I had pushed back, as maybe I wouldn’t have caught HPV.
I was shaken up when I learned I had high risk HPV. I had CIN3, which is the worst stage of abnormal cells you can have. It all happened very quickly — before I had the colposcopy I was already told I’d need LLETZ to remove the abnormal cells a week later. The colposcopy was just to confirm that. My now-husband had mouth cancer some years before this, so the potential of me having cancer too was terrifying, especially as I found out you can have HPV in the throat so his cancer could have been caused by that — but we’ll never know for sure.
Also, I’d had the vaccine at school, so I was very chill about the risk of HPV before. After being diagnosed, I shared what happened (including that I’m fine now) with my friends to encourage them to go to their screenings. I feel like we’re taught a lot about chlamydia and things like that, but not HPV.
During the LLETZ, I had local anaesthetic to numb the pain and was warned there could be bleeding for up to six weeks and I couldn’t have sex in that time either. There wasn’t any aftercare. Also, I had to have my coil removed first, as you can’t have this in for the procedure. Six months later, I had a follow up and it confirmed the LLETZ worked as all my abnormal cells were gone.
I had never considered the possibility of getting HPV. It was scary because I am one of the oldest of my year group so I was the first to have the screening among my friends, so I didn’t know what to do with the result.
I had a colposcopy as they found cell changes [after a cervical screening] which was a weird experience. I finally could speak to a medical professional during this procedure, so I tried to ask my questions but they weren’t able to answer them which was disappointing. I was then signed up automatically for more frequent screenings, and the next year it came back again positive for HPV. My biggest worry was that I found absolutely no information about what happens if you have it for more than two years. This wasn’t mentioned on official leaflets I got, nor could I find the answer when Googling. In the end a friend who is a journalist reporting on women’s health told me that you just live with it and get regular checks until something changes.
I have lots of European friends, and they seem to deal with female health issues differently to my friends in the UK. They seem way more clued up and aware. When I spoke to them, they were surprised at how little I knew around HPV, and helped ease my anxiety. There seems to be a big cultural difference there.
The diagnosis letter I received didn’t give much information, so I had to research this myself. More information should be given to people from the outset, especially as I had the HPV vaccine when I was in school so I didn’t think this would affect me in my adult years. I work in mental health and even I was anxious. Based on the limited information I got and how you can’t always be sure that what you read on the internet is true, fear was there. Even the NHS website is quite limited.
I never discussed it with anyone. It was daunting to not know how and why I’d got it, so I kept it to myself. I was told I’d now need to have annual screenings, instead of every three years, but that no further intervention was needed. I was just waiting for the next screening to see if it had gone from my body.
I think it would be better if someone calls you to explain the HPV process and to give you more guidance, explain the next steps, and put your mind at rest.
I spiralled when I got the letter [stating a HPV diagnosis]. I had no information on what an abnormal cervical cancer screening meant so that meant I thought of the worst outcome.
I still felt very in the dark about what having HPV meant when I had my colposcopy. The nurses in the office tried to make me feel better by telling me that they had also had it before, but the lack of information was the leading reason for my anxiety.
Among my friends, we never discussed HPV or STIs so I didn’t feel like I could talk to them. I had been vaccinated against HPV at a young age and talked about it with my mum at the time, but I still didn’t feel comfortable talking to her about it when I actually got diagnosed years later. I only talked to my partner at the time.
I felt a lot of shame if I’m honest. I had been single the previous year and had slept with a handful of guys and it felt like I was now suffering the consequences of my actions. I felt very dirty, though I know that’s just the stigma and disinformation talking. I was in therapy at the time and my therapist helped me cope with this. I still feel some shame about it and I don’t tend to talk about it unless a friend brings up their own experience, but reading Reddit threads has helped me see it’s so common.
I wish I would have known that HPV and the small risk of cancer is very treatable if caught early. It doesn’t mean that you are dirty and it doesn’t mean that you are a bad person for getting it. I wish I had gotten a better education about HPV because it would have eased my anxiety from the very beginning. I lost a lot of sleep and now I know that that didn’t have to be the case.
After panicking, I spent time trying to find a way to phrase the news to my boyfriend so I could provide him with information that would not make him worry either. I felt gross and like I’d done something wrong, and that my health was in danger.
I felt a lot of shame, presuming that some probably meaningless unprotected encounter in my past had given me this thing that had no treatment really freaked me out. It killed my sex drive which hasn’t really recovered even though the HPV is gone now (as I found out the next year in another screening). That’s where most of my most difficult feelings came from, my body being affected by another person and a spur of the moment decision.
I also felt frustrated that my boyfriend couldn’t get tested — did I give it to him, or did I get it from him? If we have sex, will I catch it again? [It’s impossible to know who gave it to who, or if both parties even have it, and there is very little information available on the possibility of catching it again]. Even though I tried to reassure myself it’s really common, I was googling every minor symptom I had that year, wasting a lot of my time and causing worry because there’s not much trustworthy information out there. It was like a fog of websites.
I still feel pretty in the dark about it all.
My first smear test in 2019 brought up HPV. I was a little bit ashamed and confused to think I had the [HPV vaccine] injections but still had the HPV diagnosis years later.
I was invited to have a screening the year after to check if the HPV was still there, which it was. This went on for three consecutive years before having a colposcopy. After receiving the colposcopy results, the HPV had cleared, and I have now gone back to having a smear every three years.
My friendship group are quite open and can talk to each other about this stuff. I had a close friend who went through pretty much the exact same experience as me, so that and googling helped me see it’s really common and nothing to be ashamed of as a young woman. If only I’d known this from the outset, and that it doesn’t mean cancer… It would have saved a lot of anxiety around the diagnosis.
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