Feelings of shame and smear uptake

Hello all :slight_smile:

Just came across this article which really does emphasise the fact we need greater education and more transparency with HPV. It’s so sad to read so many posts in this forum of people who feel dirty and ashamed because they are being told they have HPV, due to the change in smear screening a few years ago.

Also, worryingly, the article has highlighted that smear uptake is at its lowest in decades. Considering Wales is changing smears from three to five-yearly, this is even more concerning.

We really do need to talk to the people in our lives about the importance of smears, how HPV is now reported but that HPV itself is no big deal, and to remove the stigma. It’s no wonder that smear uptake is so low. Of course we don’t want to be told we have HPV, but the scenario of not knowing and having undiscovered cell abnormalities is so much worse. I freely talk to my family and friends about my smear results, colposcopy and treatment, as it really needs to be as normal as talking about having a cold.

https://www.independent.co.uk/life-style/women/cervical-cancer-women-ashamed-diagnosis-b1995489.html

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I do have one concern with this article though. It refers to women having smears. We do live in a society where not everyone who has a cervix identifies as a woman.

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Yup. When they told me I had hpv I feel dirty and doesn’t help that its classed has a std.
Even when I told my ex about the cancer and hpv, he said I must of been fucking around to get it and if iv passed it on to him.
There’s just to much shame around hpv.

Glad he’s your ex, Chunli.

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Hi emma187

I 100% agree about the need to talk to people in our lives about the importance of smears and about HPV.

Since my CC diagnosis in 2017 I’ve done a lot of awareness raising around this subject. I’ve had one to one conversations with quite a few hundreds of women (plus some men) and it’s very clear that those who have family/friends who mutually support one another with cervical screening are much more likely to be up to date with their smears. The conversation needs to be normalised.

I also consider that GPs should be doing more to support patients who are not up to date with smears. Unfortunately I hadn’t had a smear test for over 10 years when I was diagnosed with cc age 60y . During those 10 years a couple of GPs brought up the subject but dropped it when I got defensive saying I was low risk and didn’t need smears any more. It would have been much better if the GPs had taken a a couple of minutes to ask if I had any concerns about the test and then maybe there could have been a conversation about the extreme pain they caused me. I’ve only recently understood that my inability to cope with the pain was not about me being a wimp or a freak (as I thought) but due to menopause related vaginal atrophy which could have been remedied with topical oestrogen cream.

x

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Hi Jazza,

It’s so good that you’ve been raising awareness. If we all speak to, and encourage, at least one other person to have their smears and not to be alarmed by HPV, it would make a such difference!

The GP’s definitely need to do more, but I do understand that it is difficult for them, they are so very stretched. We seem to be told to have our smears to avoid cervical cancer, but we aren’t really told much about HPV and abnormalities. This week, I think it’s been Cervical Cancer Prevention week, and I’ve noticed a lot of news reports about smears. Hopefully this will encourage normality over having smears and the HPV diagnosis that most of us seem to have.

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Hi emma187

Something that I think could be a game changer is for the NHS to offer self sampling for HPV. According to what I’ve read large scale trials were started last year: https://www.england.nhs.uk/2021/02/nhs-gives-women-hpv-home-testing-kits-to-cut-cancer-deaths/

I think self sampling removes some of the barriers to getting a smear test and I think it’s likely that I would have engaged with the process. Hopefully some good information about HPV is included with the kit to help allay any fears.

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