HPV diagnosis considered dirty and shameful finds new research

High numbers of women say having HPV would impact their mental health, confidence and sex life

Two in five say they wouldn’t have sex with someone with HPV

Calls to Jo’s Cervical Cancer Trust’s Helpline about HPV have risen 50% over the past year

As cervical screening across the UK moves to testing for human papillomavirus (HPV) first, new research  has uncovered worrying levels of stigma and misunderstanding around the virus. Despite eight out of ten people having HPV at some point in their lives , less than a quarter (22%) of women say they would date someone with HPV. If told they had the virus, one in five would feel embarrassed and one in ten dirty.

The new method of testing in cervical screening means many more women will be told they have HPV. Jo’s Cervical Cancer Trust is concerned that gaps in understanding could mean that what might be considered a simple HPV diagnosis could actually have a damaging effect on the lives of women. It is running its #SmearForSmear campaign during Cervical Cancer Prevention Week (20-26 January) to smear the myths and stigma about HPV and get the facts out.

In most cases HPV goes away by itself, without doing the body any harm. Sometimes it causes cells to change which, if not treated, could develop into cervical cancer. Testing for HPV is a more accurate test than cytology and is estimated to prevent almost 500 extra cervical cancers every year.

While HPV can be confusing, Jo’s Cervical Cancer Trust wants to reduce the shame and stigma associated with the common virus. Its new research found a third of women (33%) consider HPV a taboo topic and almost four in ten (39%) would not want anyone to know if they had it.

The charity warns that lack of understanding about HPV could lead to impulsive decisions or accusations which could have a life-long impact. Large numbers of women said a diagnosis would negatively impact their dating life (40%) or sex life (43%) and half (20% strongly agree or agree, 25% don’t know) would consider ending a relationship with someone who has HPV. Many would not want to have sex with (41%) or kiss (23%) someone with the virus highlighting confusion over how common the virus is and how it affects the body.

The psychological impact of a HPV diagnosis was pronounced, with over a third (37%) saying that being told they had the virus would affect their confidence and 35% that it would affect their mental health.

Kristen was 44 when she was diagnosed with stage 4b cervical cancer: “I knew nothing about HPV before I was diagnosed with cervical cancer. It was another layer of fear and confusion. At first, I felt really dirty and thought I had done something wrong. It put a strain on my relationship. My partner didn’t understand it either and initially I blamed him for giving it to me. Then it made me question past partners. I was also scared to be intimate with him for fear of the cancer coming back. I felt very alone and unable to talk to people about my cancer diagnosis, because of the stigma about HPV. I was ashamed. No one should feel like this, especially when you have the biggest fight ever against cancer.”

While the virus can live in the body for many years, often remaining undetected, people often assume infidelity. Over half (57%) say they might question if their partner had been unfaithful if they were told they had the virus and just 11% think people in long term relationships can get HPV. 

Robert Music, Chief Executive, Jo’s Cervical Cancer Trust said: “No one should feel ashamed about having HPV. We must normalise the virus to reduce the emotional impact of diagnosis and ensure people know where to get trustworthy information and support. This means stripping away the stigma and getting the facts out. Smear tests are the best protection against cervical cancer and we want women to understand what their results mean, instead of having to navigate myths.” 

The charity is concerned that calling HPV an STI is fuelling the emotional response to the virus and is encouraging a change in language. It is launching a new resource for health professionals on talking about HPV with patients. When asked what HPV is 9% said: STI, 23%: don’t know/never heard of it, 8%: herpes, 38%: a virus

Calls to the charity’s Helpline about HPV have already risen 50% over the past year. It is expecting this to significantly rise as more women are tested for HPV and is calling on health professionals to be prepared for increases in questions from patients and encouraging open conversation. 

Dr Philippa Kaye, GP: “HPV is complicated, but it’s so important that women understand what it means to have the virus, especially how common it actually is. We need to smear myths such as HPV being dirty or a reflection on someone’s sexual behaviour. Testing for HPV in cervical screening is a fantastic change which will save lives by preventing even more cervical cancers. So if you are overdue your cervical screening give your GP a call to get it booked in.”

Mercedes was diagnosed with high-grade cervical cell changes caused by HPV: “It was a really scary time. I never thought this could happen as I’d had the HPV vaccine. The way HPV is talked about made me feel as though I had an STI, despite condoms not protecting you from it, and despite how common it is. It made me feel dirty, like I’d contracted something horrible or that something was wrong with me.” 

While findings were similar across all ages, they were more pronounced among young women . 

Further findings:

• Only 54% know you can get HPV from protected sex
• 24% haven’t heard of HPV and just 16% think it’s common.
• 48% would be surprised if they were told they had HPV in smear test results with 48% unsure what HPV has to do with smear tests
• High numbers feel worried (35%), upset (24%) and scared (23%) when thinking about the virus
• Just 26% feel comfortable talking to their friends about HPV and 26% would feel awkward telling a doctor

 

Ends

For further comment, interviews or case studies please contact [email protected] or call 020 3096 8000 / 07772 290064

Notes to editors

Survey of 2,034 Women aged 18 and over. Collected between 9.12.19-12.12.19 by Censuswide on behalf of Jo's Cervical Cancer Trust

About Cervical Cancer Prevention Week and #SmearForSmear: Cervical Cancer Prevention Week runs from 20-26 January 2019. Jo’s Cervical Cancer Trust is running its #SmearForSmear campaign. The popular smear test awareness campaign has seen support from celebrities including Kate Beckinsale and Cara Delevingne. This year it aims to smear the myths and get the facts out about HPV and smear tests. It is asking people to share a lipstick smear, smear their own myth or share one of the campaign materials. For more information visit www.jostrust.org.uk/smearforsmear  

About Jo’s Cervical Cancer Trust: Jo’s Cervical Cancer Trust is the UK’s leading cervical cancer charity. It provides information and support to anyone affected and campaigns for excellence in cervical cancer treatment, care and prevention. Its national Helpline is free, confidential and on 0808 802 8000

HPV facts

• At some point in our lives, 8 out of 10 of us will get at least one type of HPV. In most cases the immune system will get rid of it. Around 90% of HPV infections clear within 2 years.
• HPV infections do not usually have any symptoms, so you may not even know you had it.
• HPV lives on our skin, so it is easy to get and difficult to completely protect against.
• There are over 200 types of HPV. About 40 HPV types affect the genital areas
• Most genital HPV types are low risk. They can cause conditions like genital warts
• About 13 HPV types are linked to HPV-related cancers, including cervical cancer. These types are called high-risk HPV.
• You are at risk of getting HPV from your first sexual contact, whatever that is – it doesn’t have to be penetrative sex 
• We can have HPV for a long time without knowing about it, so it is hard to know when we got HPV or who we got it from
• Cervical screening (a smear test) can find a high-risk HPV virus and changes early, before it develops into cancer.
• For more information: https://www.jostrust.org.uk/information/hpv