Stories of infection and requests for help

“I was single when I got the diagnosis on an HPV Test, and I wondered how I could face dating again. What would people think now they know I got an STD Home Panel Test that is positive, that I am promiscuous or 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 wasn’t easy to know how and when to converse with a male partner because there was so little advice on how to do it. My first thought was, ‘What if I date someone, I pass HPV 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 have an STD diagnosis on what it means to have it. For example, we want to know how to communicate with new and current partners about the STD Lab exam.

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

Mercedes, 30

“At the colposcopy, my nurse explained a bit more about HPV and told me for the first 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 dirty, like I’d contracted something horrible or that something was wrong with me. I think that people should bear in mind people’s feelings when they 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 who got an STD Full Profile isn’t relevant.”

We want to see greater sharing of and listening to the patient experience so that healthcare professionals can 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. Any penetrative activity contracted it. It can also 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 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 it 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 HPV is and how to get an STD Urine test for it. Most people will get it eventually, and it will normally clear itself. I was not responsible for what was happening to me and 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 HPV Type and 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 staff 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 to the massage table and walked out in tears.”

Kristen, 44

When I told my partner of my STD Home 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 first time you hear about what it means to live with HPV is when you’re being diagnosed with cancer and face being blindsided by both of these things. It would have been a 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 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. Prevention, treatment, and detection are different from other STIs. Calling it an STI can increase taboos and fears.

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

Madeleine, 61

I’ve been married for 40 years and can’t bear the thought of passing HPV on to my husband. I also did not want to ask to use a condom at this point. It means that our intimacy has stopped, but I couldn’t risk it.

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

I don’t know if I’ve fought it over because I’m now too old to be invited back for smear and STD Swab tests. I am considering paying privately to have an HPV DNA Report. It would be a lot to do, especially with the cost. Due to where I live, I travel miles to a hospital. It is worth it for my peace of mind.

Tiffany, 26: A Diagnosis