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World Ditch HPV stigma to avoid the shame I felt, says MP

04:25  14 june  2021
04:25  14 june  2021 Source:   bbc.com

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She said stigma and confusion about the common virus must be broken down so that others do not experience the same thing. More women in the UK are being told they have it because of changes to the way smear tests work in recent years. Phillips says it should not put people off attending cervical Sharing her story with the BBC before Cervical Screening Awareness Week, she said : " I felt like it was my fault, that I had done something wrong, because I had HPV ." The MP for Birmingham Yardley, now 39, added: "It's sexually transmitted so there was always this sense that it was somehow my doing

" HPV is a new topic to lots of people and so there is lots of confusion around the virus which can lead to myths arising as well as feelings such as fear," explains Imogen Pinnell, Health Information Manager at Jo's Cervical Cancer Trust. There's no one to blame for an HPV diagnosis - it's a common virus , it can be passed on even through protected sex, and some types of cancer-causing HPV aren't covered by the vaccine. " I felt very alone and unable to talk to people about my cancer diagnosis, because of the stigma about HPV .

The Labour MP Jess Phillips has said she felt "shame and guilt" after being told she had HPV (human papillomavirus) in her 20s.

a woman wearing glasses and smiling at the camera © Reuters

She said stigma and confusion about the common virus must be broken down so that others do not experience the same thing.

More women in the UK are being told they have it because of changes to the way smear tests work in recent years.

Phillips says it should not put people off attending cervical screenings.

Most sexually active people will contract HPV, which is passed on through sexual contact, at some point.

In most cases, they do not know they have it, and it clears without treatment - but it can cause cell mutations that can ultimately develop into cervical cancer, and some other cancers.

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HPV is the most common STD in America, but we still aren’t talking about it. Part of it is the shame associated with the virus , and part of it is the lack of education. Not only do they often face disproportionate stigma , but also disproportionate responsibility. “ I feel women in general with sexual health are the canaries in the coal mine when it comes to heterosexual relationships,” says Jane. Women have (or are supposed to have, at least) an annual doctor’s visit to specifically monitor their sexual health, so they are often the first to know in a heterosexual relationship when there is an STI risk.

The sexually transmitted disease human papillomavirus ( HPV ) is really, really, ridiculously common. Around one in four Americans currently has HPV , and about 80 percent of people will get it in their lifetime—giving it the dubious honor of being the most common STD. Plus, if you're wondering whether to tell a guy, they can't even be tested for the virus , Abdur-Rahman explains. Those factors combined with the fact that HPV is often harmless means it's natural to wonder if telling is worth it, he says , and some doctors even say that depending on the specific circumstances, it OK not to.

Cervical cancer is by far the most common HPV-related disease, according to the WHO, and nearly all cases of cervical cancer can be attributed to HPV infection.

  • HPV puts 'strain' on sex and dating
  • 'Huge pressure' to catch up on missed smear tests

Ms Phillips was 22 when changes to cells in her cervix were detected. Her doctor told her she may not be able to have children because she also had endometriosis, a condition that means bodily tissue similar to the lining of the womb starts to grow in other parts of the body.

Sharing her story with the BBC before Cervical Screening Awareness Week, she said: "I felt like it was my fault, that I had done something wrong, because I had HPV."

The MP for Birmingham Yardley, now 39, added: "It's sexually transmitted so there was always this sense that it was somehow my doing and that I could have avoided this."

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Felt stigma , personality traits, and seizure freedom were not related to the DMS score. Conclusions Two-thirds of Korean adults with newly diagnosed epilepsy often or sometimes keep their epilepsy a secret. Our findings show that an HPV message containing specific de- stigmatising components may reduce public stigma towards high-risk HPV . Also, focusing solely on high-risk HPV in the context of cervical cancer helps to avoid the stigmatising effect of genital warts from tainting perceptions about high-risk HPV infection.

" I feel shame and embarrassment that I carry this 'taint'," says Ruby, 40. Mariana, 33, told me : " I was worried I ’d have regular breakouts and it would affect my sex life massively." The fact that the virus stays with you for life is a key reason why people have such a pessimistic view of it. Yet many find that after the initial outbreak, they do not suffer from further symptoms. "People worry because herpes is 'incurable'," says Dr Naomi Sutton, a consultant in sexual health and contributor on Channel 4’s The Sex Clinic.

Because she knew little about HPV, she said she did not know what to expect when she did become pregnant that year, and worried that it could affect her unborn child.

"It seems that relatively little has changed in regards to HPV - the level of knowledge, how it is viewed, and how it is spoken about," she said.

"I feel saddened that there are still so many women and people with a cervix, finding out they have HPV, feeling terrified about their future and possibly blaming themselves."

HPV and smear tests: The facts

  • Around 80% of sexually active adults will contract one of more than 200 strains of HPV at some point in their lives
  • Roughly 90% of infections go away by themselves within two years
  • About 73% of people invited for smear tests - anyone aged between 25 and 64 and registered as female at their GP surgery - attend
  • In the UK, 3,200 women get cervical cancer every year

Smear tests used to aim to detect cell changes. However, since 2018 in Wales, 2019 in England, and 2020 in Scotland, all tests have screened for HPV first.

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For years, I couldn’t say the word “sex” without blushing. In fact, most of the time, I referred to it as “going all the way.” I would even lower my voice when I said it. But when I fell in love with the guy who worked across the hall from me , all of that prim, Victorian era attitude went straight out the window. Once, we didn’t even manage to make it out of the office before we gave in to our impulses. (Apologies to my former boss, we totally cleaned up all the files afterward, I promise.) But the thing is, while I had finally allowed myself to indulge my sexual desire, I hadn’t yet shed the shame around it.

We have all felt shame at one time or another. Maybe we were teased for mispronouncing a common word or for how we looked in a bathing suit, or perhaps a loved one witnessed us telling a lie. Shame is the uncomfortable sensation we feel in the pit of our stomach when it seems we have no safe haven from the judging gaze of others. We feel small and bad about ourselves and wish we could vanish. Although shame is a universal emotion, how it affects mental health and behavior is not self-evident. Researchers have made good progress in addressing that question. Bad for Your Health.

That enables them to work out more accurately - and earlier on - who is at a higher risk of cervical cancer. It also means more women are being told they have HPV.

Ms Phillips stressed people should not be put off by the prospect of being told they have HPV and that talking about it more would stop people being "lumbered" with "emotional baggage".

"Anyone can get HPV and anyone can pass it on," she said. "The fact that it is mostly women dealing with the fall out is simply not fair."

Samantha Dixon, chief executive of Jo's Cervical Cancer Trust, said around one in four people invited for smear tests in the UK do not attend.

"Some might simply forget to book an appointment, and other barriers include trauma, pain, a busy lifestyle or a perceived lack of importance of the test," she said. "The Covid-19 pandemic has also presented another new barrier."

Ms Phillips said anyone struggling with a HPV diagnosis should not "feel ashamed".

"Please don't blame yourself," she said. "I want to make sure no-one feels as bad about this as I once did."

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