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Cervical screening results leading to shame

Mon, 14/06/2021 - 00:00

Charity worried low HPV awareness is increasing stigma in cervical screening

New research by Jo’s Cervical Cancer Trust shows that only half of those who have HPV (human Papillomavirus) on their cervical screening results know what it is. The number of service users coming to the charity has doubled over the last few years, in line with HPV primary screening being introduced through the UK. Users regularly report feeling confused, ashamed and terrified. 

Cervical cancer is rare with 3,200 diagnoses every year while HPV, the cause of the disease, is extremely common affecting 8 in 10 in their lifetime[1]. The body will normally clear the infection without it causing harm, however lack of awareness of the virus means almost everyone who is told they have HPV fears that they have cancer (over 8 in 10). 

The charity surveyed members of its community who have had HPV and found high numbers  reported feeling anxious (over 7 in 10) and ashamed (more than 4 in 10). 

Cervical screening in England, Scotland and Wales uses HPV primary screening which is a more sensitive and accurate test than the previous testing method of looking for cell changes. It helps find those at higher risk of cervical cancer earlier. As a result more women and people with a cervix are learning they have the virus.

Northern Ireland is yet to move and still uses cytology as the first test on samples.

The charity warns that unless HPV stigma and confusion is tackled, years of work to remove stigma in cervical screening risks being undone and thousands needlessly experience these feelings.

HPV has been the most popular topic on their expert clarification service for the last two years and 2nd most popular topic on their Helpline. The charity’s support services have also seen an increase in health anxiety relating to HPV.

Misconceptions around the nature of HPV, and its relation to sexually transmitted infections, can lead to concerns around promiscuity, infidelity and even relationship breakdown which Jo’s Cervical Cancer Trust regularly hear through their services. Almost 4 in 10 reported being worried about telling their partner (38%) and almost 2 in 10 worried that a partner had cheated (17%). Half of those surveyed were worried about sex and intimacy after learning they have HPV.

Focus groups and interviews carried out by the charity found that a HPV diagnosis can cause those affected to resort to drastic lifestyle changes to try to get rid of the virus, such as changing eating habits, cutting out alcohol, buying expensive supplements which are not proven to clear HPV, and avoiding sex. 

There is no HPV test for men, meaning that the emotional strain of a HPV diagnosis can fall to women. The charity wants to see an increase in education about HPV from an earlier age to reduce the impact across the life course. During Cervical Screening Awareness Week (14-20 June) it is encouraging conversation and sharing experiences about the virus in order to reduce isolation and anxiety. 

For those living with and beyond cervical cancer, the HPV diagnosis often prevails.

Sam Dixon, Chief Executive of Jo’s Cervical Cancer Trust:

“Increasing cervical screening attendance remains vital but we must not overlook the support that is often required after the test. HPV is so common and yet those affected tell us they often feel isolated. We regularly hear about anxiety, worry and even relationship break downs because of those three letters. Increasing HPV understanding must go hand in hand with cervical screening awareness so that everyone understands their results, and this very normal thing becomes normalised.” 

Dr Anita Mitra (aka the Gynae Geek), Academic Specialty Registrar in Obstetrics and Gynaecology, and Clinical Research Fellow:

“I often meet patients who are very scared to receive their cervical screening results telling them they have HPV. I always describe it as 'like the common cold that you get on your cervix; most of us are going to get it at some point, and most infections clear quickly on their own without causing long-term health problems.' However, if the HPV isn’t cleared it can cause cervical changes including cervical cancer. And that is why we check for HPV as part of the cervical screening test. It's also important to be clear that it isn't a sign of promiscuity, infidelity or poor hygiene. If you're worried, please talk to a healthcare professional so that we can address your concerns and answer any questions that you have.”

Laura Carter, 32, Manchester was diagnosed with HPV and cervical cell changes in May 2021:

“I was totally confused when I was diagnosed with HPV following a smear test, as previously I had always received normal results and hadn’t been sexually active in two years. When I looked into it, I cried all morning and just panicked as the first thing you see is cancer. I attended a follow up smear test one year later, which showed that I still had HPV and it had now caused cervical cell changes.  I had to have some difficult conversations with people who thought I’d been diagnosed because I wasn’t having safe sex which absolutely isn't the case and felt really judged. It really is an education piece. The fear and stigma around HPV stopped me from talking to people about what was happening to me when I needed support. But smear tests are so important, they save lives and we should talk about them as much as possible.”

Ends

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

Notes to editors

  • Research based on 857 responses to a survey between March 7 and April 12 2021, focus groups were held between May 12th and June 2nd 
  • Cervical Screening Awareness Week runs from 14th – 20th June 2021 by Jo’s Cervical Cancer Trust. More details are available at www.jostrust.org.uk/csaw 
  • 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

[1] https://www.jostrust.org.uk/information/hpv/hpv-cervical-cancer