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Shared Stories of Interest in HPV to know that your not alone.

About Tiffany, Only 26

“I was single when I got the diagnosis, and I wondered how I could face dating again. Would I be thought of as promiscuous? Would I be seen as careless in terms of contraception? Would it put future partners off me?

What I didn’t realise was that this way of thinking was internalised slut-shaming. It was difficult to know how and when to have a conversation with a male partner because there was so little advice out there on how to do it. My rst thought was; ‘what if I date someone, I pass it to them, we then break up and he passes it to another woman, and it causes her health issues?”

We want to see

More information and resources for those who are diagnosed on what it means to have HPV, for example on how to communicate with new and current partners.

Health professionals can play an important role in increasing the understanding and supporting patients. Being aware of the different patient experiences is central to this. Over two thirds wanted information about the virus from their healthcare professional.

Mercedes, 30

“At the colposcopy, my nurse explained a bit more about HPV, and told me for the rst time that condoms don’t necessarily protect you. She also mentioned that the amount of partners I had or my partner had made it more likely to come into contact with it. This made me feel really dirty, like I’d contracted something horrible or that something was wrong with me. I think that people should bear in mind peoples’ feelings when you talk about it. It doesn’t matter how many people you’ve been with, you can come into contact with the virus at any point. The number of partners isn’t really relevant.”

We want to see

Greater sharing of, and listening to, the patient experience so that healthcare professionals are equipped to deal with the wide range of questions and concerns their patients may bring.

Dinah, 29

Seeing HPV on a letter was scary, it was something I knew little about, so I asked my GP. They said that it was an STI and was contracted by any penetrative activity and that it can sometimes develop into precancerous cells or cancer. That was the extent of the conversation.

I’d only ever had 2 partners in my life, had always been safe and I felt like I now had a sexually transmitted disease and that I was somehow responsible for myself having cancer. It made me feel dirty and was almost worse than the cancer. I didn’t know when I had contracted, and didn’t know if I was at risk of passing it on or getting it again.

I’d have liked the GP to have been clearer about what it actually is. That actually most people will get it at some point in their life and that it will normally clear itself. That I was not responsible for what was now happening to me and that I hadn’t done anything wrong.”

There is a lot of stigma surrounding it and reports of feeling dirty and ashamed are common.

Cassandra, 41

“There is a stigma with cervical cancer that it is a sexually transmitted disease, or it might even be just because it’s ‘down there’. People don’t always talk about cervical cancer in the same way that you might talk about breast cancer, for example. My husband booked me a spa day when I went into remission. I explained to the sta that I couldn’t have a certain treatment because of my cancer treatment. The woman replied ‘oh you poor thing, what kind of cancer?’

When I replied ‘cervical’, she said ‘cervical – where did you get that from?’ I got straight o the massage table and walked

out in tears.”

Kristen, 44

When I told my partner of my HPV diagnosis, needing his support and love, I instead heard back: “that’s an STD. I’ve not given you that. Who gave you that?” In the back of my mind I was wondering if he had given it to me too, but the truth is I was going through the toughest time of my life… and yet my partner and I were arguing about whether one of us had cheated. It shouldn’t be the case that the rst time you hear about what it means to live with it is when you’re being diagnosed with cancer, and face being blindsided by both of these things. It would have been that bit easier if I hadn’t had to contend with the stigma throughout my experience with cancer. It’s still hard to talk about. When people ask what cancer I have it can be hard to say. If I had felt able to be open, I might have been able to talk to people who understood what I was going through and share the burden.”

We want to see

HPV normalised with the STI label taken away. This will remove some of the blame and shame attached to a diagnosis.

Stigma can make accessing screening and receiving results far harder. HPV cannot be prevented, treated, or detected in the same way as other STIs and calling it an STI can just increase taboos and fears.

There are many gaps in the research and our understanding about it, which makes answering patients’ questions hard. Persistency, retransmission and dormancy are just some areas where question marks still remain.

Madeleine, 61

I’ve been married for 40 years and can’t bear the thought of passing  it onto my husband or asking to use a condom at this point. It means that our intimacy has totally stopped, but I just couldn’t risk it.

It does make me feel vulnerable, knowing that it is staying in my body. What upsets me most is the lack of information. Why can’t I ght it? How long have I had it? It does feel like the virus is swept under the carpet. It causes a lot of anxiety which is always in the background and, for me, is never going to go away.

I’m never going to know if I’ve fought it o, because I’m now too old to be invited back for smear tests. I am considering paying privately to have a HPV Variant test kit handy. It would be a lot to do, with the cost and because where I live means travelling miles to a hospital, but for me it would be worth it for my own peace of mind.”