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The emotional impact of HPV

Posted on: Friday, 12th February 2021 by Hannah Dwyer, Support Services Officer

Hannah Dwyer is a Support Services Officer at Jo’s Cervical Cancer Trust, where she works on the Helpline and other services. In this blog, she shares her experience of the impact of HPV on service users. 

The majority of our calls have an HPV theme. The volume of calls about it has risen a lot because cervical screening has changed across most of the UK. It now looks for high-risk types of the virus first – the cell sample only goes to cytology if HPV shows up. So we’re seeing a lot of service users who are finding out they have HPV, which they wouldn’t have known in the past. This is actually great news because it means testing is more accurate, but it does bring up a lot of anxiety. 

“Much of the anxiety is down to a lack of knowledge about how HPV progresses.”

Worries about HPV and it progressing

HPV can be worrying because there isn’t much they can do to fight off the virus. If they smoke, quitting can help. But other than that, patients simply have to wait 12 months for their follow-up to find out whether they’ve cleared the virus. Unlike many other viruses, there are no symptoms. So your patients have no way of knowing what’s going on in their bodies, whether they still have the virus and whether it’s doing any harm. That can provoke a lot of anxiety. Some of our callers say they feel as though they have a ticking time bomb inside them, and that their life is on hold for a year. If they have had cell changes in the past, they may be particularly anxious, as they might be worried the cell changes will come back.

 Much of the anxiety is down to a lack of knowledge about how HPV progresses. We talk about ‘high risk’ types of HPV and that can sound alarming. But the risk is just about the potential for it leading to cell changes. It doesn’t mean it definitely will. Active HPV doesn’t automatically cause cell changes. Many women and people with a cervix clear it before it gets to that stage. 

Even when HPV does cause changes, it is a long process that can take many years – even decades. Knowing that cell changes are not cervical cancer, and that they can be monitored or treated, can be very helpful for patients. It’s helpful to remind patients that going for cervical screening means they are being monitored, which is the best way of preventing any problems. I say to callers, ‘Yes, I can understand how frustrating and worrying it would be, and anyone would probably feel the same. But the good thing is cervical screening means that part of your body is being monitored. We could be concerned about lots of other parts of the body but would only go for help when we had symptoms as there’s no annual screening. By going for screening, you’re helping to look after your cervical health.’

Stigma and sex lives

Yes, HPV can be sexually transmitted – but we don’t consider it an STI. Instead, we refer to it as a genital skin-to-skin virus for many reasons. It isn’t checked for in a sexual health clinic. We can’t prevent or treat it, and men can’t be tested for it. It has nothing to do with promiscuity. You could contract HPV from your first sexual experience and we’re all more likely than not to have it at some point – 8 in 10 of us are affected at some stage. Explaining all this can help break down the stigma some patients feel.

We get lots of questions about sex lives. Patients often ask if they have to tell current and previous partners – the answer is no. Sometimes they are worried about passing it onto a partner. One question we’re asked a lot is whether a couple can pass it backwards and forwards between them. The honest answer to that is that we don’t have enough research to talk about reinfection, but what we do have suggests it can happen. The best thing to do is give as much information as you can and point them towards the FAQs on our website

Concern that a partner’s been unfaithful

When someone in a long-term relationship tests positive for HPV after years of clear smear tests, they may understandably worry this is a sign that their partner has been unfaithful. We receive a lot of calls about this. I always explain to callers that HPV can lie dormant for many years and we don’t know if and why it becomes active. So getting an HPV result doesn’t mean your partner’s been unfaithful. 

Of course you never know how a caller will take the information. I try to help people to feel supported and as though I’m on their side. But there will always be someone who goes away, still worried. I tell them we can call back or they can ring us back when they want. Remember you can point your patients towards our Helpline on 0808 802 8000 or HPV information if you can’t answer all their questions. 

"I say to callers, ‘Yes, I can understand how frustrating and worrying it would be, and anyone would probably feel the same. But the good thing is cervical screening means that part of your body is being monitored.’"

For more information about where to direct your patients, visit jostrust.org.uk/support We also have more information to help you support patients worried about HPV at jostrust.org.uk/professionals/hpv

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