Do you have a story to tell about syphilis?

Sharing stories helps you and helps others.

Do you have a story to tell about infection? Maybe you were diagnosed with syphilis and can help other people know more about what it was like?  Are you a researcher, policy maker or educator with something to say about syphilis tests? Do you know about STD testing? Or are you a health worker who has checked, diagnosed or treated syphilis? Get in touch to share your story.

Rianna (London)

Our sexual health services across the country have changed how they deliver healthcare since COVID began. During this time, I’ve worked as a Sexual Health Advisor for an integrated sexual health service in East London. I’ve noticed a recent increase in patients testing positive for syphilis during pregnancy. Frequently, patients test positive via antenatal clinics and end up being referred to our service for treatment.

I am also seeing that a lot of women don’t know that if you get it during pregnancy, the infection can cause serious problems, including miscarriage or stillbirth. If it remains untreated during pregnancy, then babies can be born with it – a severe and often life-threatening infection in infants.

For some of the women, this exam happens to be the first and only STD Profile test they’ve ever had, so naturally, the result can come as a shock. For other women who have had sexual health screens in the past and have received negative results, a positive diagnosis can also come as a surprise. 

However, whatever the situation, my job is always to provide the patients I see with information. I explain the routes of transmission and symptoms. I encourage and support them to inform their recent sexual partners to get checked and treated. Honestly, I suggest treatment and explain their responsibilities for future STD home testing to protect themselves and their partners.

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Billie (London)

When Billie got a call from a friend he’d had a threeway with, he was advised to go and get treated.

A few weeks ago, I went on a three-way trip with a friend, Carlos, and his partner. He called me to say he was positive. He’d been for his regular HIV appointment and had asked the doctor to look at a sore on his penis.

The doctor said she was pretty sure it was syphilis, took some tests, and started him on treatment straight away. When Carlos called me from the clinic to tell me, he said the doctor advised me to come in to be checked. Just to be sure.

The treatment

Carlos mentioned that the treatment he’d just had was uncomfortable. But I wasn’t ready for what waited for me at the clinic! The doctor took an STD blood checkup and then advised me to get treated anyway before waiting for the results to return. 

Because I was going away for work later that month, I decided to have the treatment. The nurse asked me to take my trousers down and get on the couch. The poor nurse! I’ve never sworn so much during a medical appointment! Just as I got off the couch and started buttoning up my jeans, the nurse told me to get back on the couch because there was another injection to do.

A week later, I got a call to say that the syphilis blood exam had come back negative. I don’t regret being treated. I know if I’d waited and it had developed, the treatment would have involved more injections. 

I’m also glad that Carlos told me he could’ve waited to see if his results came back positive. But he trusted me to make my own decisions with my health.

Jamie 

I’ve had it a couple of times. The very first time I had it, I found out through a routine check that I didn’t have any symptoms. I was relatively aware of sexual health and the symptoms of STIs. In the past, I was already diagnosed with HIV, so it wasn’t a huge thing for me.

I saw it as something that affected people in olden times. My only association with it was that it killed monarchs. I felt like it didn’t come up as much as other STIs. I felt like HIV was always at the forefront of sexual health for queer men. But it wasn’t talked about as much.

Previously, I had a negative experience at a sexual health screening years ago where a nurse made me feel alienated. She didn’t recognise my symptoms, and I was being blamed for the return of gonorrhoea in the UK because I said I didn’t know where it came from. I think she was homophobic, seeing my sex life as a cultural issue. At the time, I was only sleeping with one person. I was treated even though they didn’t check me, which is different now because there are fears of antibiotic resistance.

The stigma

I had an issue where I couldn’t hear properly as if someone had their hand over my ear. I went to my GP, who rinsed it out. No change. Nothing. Around the same time, I had an HIV appointment. I came into contact with syphilis, and I told the HIV doctor that I also had impaired hearing in one ear. She looked at me, concerned, and, sSyphilishilis can cause deafness”. My world collapsed. It turns out that after she spoke to a colleague, I went back to the GP. That deafness was a symptom of very advanced, but what I had was very advanced ear wax.

I don’t know why it gets such a bad rep. People don’t talk about it much. It was treated, and it cleared up very quickly.

Phil

In Phil’s Story, he discusses the first time he had it. And the difficulty in disclosing his diagnosis to his partners.

‍I last had it was about three years ago when I developed a rash on my upper body that wouldn’t go away. I visited my GP, thinking it was something like a skin problem. After examining me for a while, she suggested that I go and have an STD lab test as it might be syphilis. I thought she must have been mistaken as I had not experienced the common earlier symptom of a sore on my genitals (called a chancre sore), but I booked in for a exam at 56 Dean St in London right away. 

When I got to the clinic, they looked at my rash and did some weird reflex exams, and they were pretty certain that it was it. They treated me for it while I was there. The treatment was a rather large injection into my bum cheek, which left it numb for quite some time. 

After the treatment

This was the first time I’d had it, and I didn’t know too much about it. It felt like it was something you only heard about in some BBC period drama. That was a similar reaction when I told those I needed to about it, too. Because of this I admit I felt quite uncomfortable with it, it seemed to have a bit more stigma than other more commonly spoken about STIs. I think this has a lot to do with how it can develop in the later stages of the disease. 

While at the clinic, they gave me a leaflet about an STD service to tell my partners, but I thought I would be fine telling them myself. This was a bit of a chaotic time of my life, which involved regular group sex. I couldn’t narrow it down enough to one or two people, so I had to message a handful of people. This task dawned on me when I messaged the first guy, who immediately denied that he would have it and said that I shouldn’t message him again. Crikey! I messaged the others, and it was a mixed reaction; some were acting as if they were too pure to get an STD, but the others were more understanding.

I guess I had expected everyone to be understanding, especially as there was a good chance I could have got it from any one of them. The bad reactions just added to my anxiety around having it, and because of this, I didn’t discuss it with my friends through that same fear.