HPV Stigma Leads to Shame for Women with Diagnosis

Dr Sheena Meredith

January 17, 2022

Negative experiences of those receiving a diagnosis of cervical cell changes following screening have been highlighted in a new report from charity Jo’s Cervical Cancer Trust.

Around 220,000 of the total screened population of about 3.5 million are diagnosed with such changes every year. For many, the link with the human papillomavirus (HPV) leads to guilt, confusion, anger or concerns about relationships and infidelity, according to a survey of 1086 women conducted on behalf of the Trust in July 2021.

Over 70% of survey respondents recalled having an HPV diagnosis, of whom 34% said it made them anxious or worried, and 35% spoke of shame, embarrassment or feeling dirty. Over a quarter of those surveyed said they felt ashamed when diagnosed with cell changes, and this was particularly pronounced in younger age groups: 40% of 25-29 year olds versus 8% of 60-64s. A fifth (21%) said they felt isolated following their diagnosis, with many not wanting to tell others.

Whilst there has been growing attention given to cervical cancer prevention over the past few years, this “often appears to stop at cervical screening, with the experiences and needs of those getting an unexpected screening result and accessing colposcopy covered far less”, the report said.

"While many have a positive experience following an unexpected result, through our support services we also hear from those who don’t have the information they need." Most women knew "little or nothing about cervical cell changes prior to being diagnosed", the report revealed, and they felt confused and scared as a result.

The authors acknowledge that a limitation of the research is that the data was self-reported and the respondents a self-selected group whose experiences may reflect "the more difficult and memorable". Whilst they were not representative of all who attend colposcopy, the findings mirror previous research on the topic as well as what the Trust sees in its support services.

Embarrassment Associated with Screening

Commenting on the report, Katharine Gale, chair of the women’s health forum at the Royal College of Nursing, told Medscape UK: "Cervical screening saves lives and the importance of regular screening and effective follow-up cannot be over-emphasised.

"We know, however, that there can be some embarrassment associated with screening which may put some off coming forward.

"There is a lot of support available, and women should not think they are alone in their concerns and embarrassment. Speaking about these is probably the most difficult step.

"Nursing staff understand this and are well placed to discuss any embarrassment or concerns with women to help reduce that stigma, improve uptake and save even more lives."

Dr Mark Lawton of the British Association for Sexual Health and HIV (BASHH) commented: "Following the role out of the HPV vaccination programme we continue to see reductions in both cervical cancer and those with cell changes.

"It is sad that the sexually-transmitted nature of HPV adds to the impact of the news of such changes. More education about HPV within schools and health settings would be welcome by BASHH to ensure uptake is maximised and stigma reduced.

"Regrettably there have been significant cuts to public health funding over the last decade. BASHH would urge the government to properly invest in high quality sexual health services and ensure this includes comprehensive education and support."

Call for More HPV Education and Guidance

The report, released to coincide with Cervical Cancer Prevention Week this week, also found considerable variation in care between hospitals and colposcopy teams, and Jo’s Trust is calling for more guidance and standardisation in areas such as provision of information and pain management, as well as greater recognition of fears women have that treatment may interfere with future pregnancy.

"Anxieties among this cohort are high, with some fears developing or increasing long after treatment has finished," the Trust said. 

It also called for far greater education and conversation about HPV to reduce the impact a diagnosis can bring. A spokesperson for the Trust told Medscape UK that as cervical screening has moved to primary HPV screening, so more women are finding out they have HPV.

"There’s a lot of misunderstanding around HPV and the HPV vaccination. This can lead to those who have had the vaccine thinking they are fully protected against HPV and cervical cancer and don’t need to attend cervical screening. Education about this should start when the vaccination is given is schools."

In addition: "GPs can play a role in helping reassure patients and signpost them to sources of support or information, in particular around HPV where lots of unhelpful stigmas and connotations exist."

Samantha Dixon, chief executive of Jo’s Trust, said in a statement: "It should not be the case that shame is connected to cervical screening results in 2022. HPV stigma is something that needs to be tackled and it’s up to all of us to remove the stigma attached to having a diagnosis. Far more needs to be done to ensure everyone attending screening is fully prepared for different results and has the information they need to deal with them, because cervical cancer prevention doesn’t stop at cervical screening."

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