Program: Shedding the shame of herpes

Ellie
I think it's really important to talk about the fact that herpes is extremely common.

Marlene
I was really uncomfortable and I was thinking, what is wrong with me? I went to the toilet and had a look and the smallest of smallest little tiny blisters.

Paige
I didn't know much about it, to be honest.

Ellie
I think herpes has got a particular stigma attached to it.

Marlene
She said you do have an STD and shock horror when someone says that to you.

Paige
You're just filled with that sense of like shame and disgust.

Marlene
I think we need to empower people about the knowledge of it and what it is and it's not as horrible as everyone thinks.

Yumi
Picture this, you've just met someone new and you've got that excited, bubbly, horny feeling in your tummy every time you think of them. There's that yearning of unresolved sexual tension. And then before you get to roll around naked together, you have to tell them that you have an incurable STI. Genital herpes. Herpes simplex virus or STI is a disease that can be transmitted to any person. STI or herpes for short is one of the most common STIs. About one in six Australians have the herpes simplex virus. So if you don't have it, it's very likely that someone you know or have even slept with does. But even though your bestie, your sister, that gang of chicks at the gym, your hairdresser and even your mum could well have herpes, it's not like we're openly chatting about it over our matcha lattes. So why is it still so hard to talk about herpes and tell sexual partners that you have it? I'm Yumi Stynes, ladies, we need to talk about shedding the shame of herpes.

Paige
I lay down on the stretcher thing and then she kind of was doing her thing and it was so painful and she was being so kind and genuine.

Yumi
This is Paige. She's 29 years old and she's lying on one of those cold paper covered beds in a GP's office trying to get to the bottom of the hectic pain in her bottom regions. It's her third doctor's appointment in a week.

Paige
You know, she was swabbing and things and, you know, she said to me, I think it's herpes. And that was the first time that I'd even heard that but also even thought that it could be an STI. I just burst out crying from just shock and just also like, I think grief, to be honest.

Yumi
The first time Paige realised something was up downstairs was roughly a week earlier.

Paige
I was sort of just noticing I was a bit tired. Like it felt a bit like COVID, if I'm perfectly honest. I was like, oh, maybe it's just fatigue and I'll just get over it. But then, yeah, I started to notice like some kind of itchiness in my vaginal region, kind of towards honestly like my anus. I was so scared of looking myself, I think, that whole week. Why were you scared to look at your own vulva? That is a great question. I think in lots of ways, like I haven't really looked at my vulva properly since. I mean, I do and I don't, but like I used to look at it when I was a kid. I used to do this really random thing when I was six, which I called chicken skin, where I noticed that the inside of the labia minora looks a bit like raw chicken skin. And so what I would do is I would run out and I would squat down probably with no clothes on in front of my family and like with my legs apart and then shout and hold them apart and go, chicken skin.

Yumi
OK, so you're no stranger to looking at your vulva.

Paige
Yeah, but then something happened over the years and then I just like became so sort of like, oh my God, can't do that. But I also think it was like maybe a bit of health anxiety or illness anxiety.

Yumi
In that week of GP visits, Paige was treated for bacterial vaginosis and for a UTI. But when antibiotics for both of those things didn't work, she found herself back at the doctors.

Paige
I couldn't walk. Like I was I was actually really struggling at that point physically.

Yumi
Paige saw a different GP this time and this one actually had a good look at her chicken skin and took some swabs. But before even sending the swabs away for testing, the doc told Paige she had herpes.

Paige
Then she prescribed antivirals and I was a bit like, oh my God. And I just burst out crying like when she told me that from just shock and just also like I think grief, to be honest.

Yumi
Paige, can you tell me about the grief? Like what what is that feeling that sent you into an eruption of tears? What are the thoughts that are going through your head at that time?

Paige
I think it was because I didn't know much about it, to be honest. And also I hate to say it, but like I think I would have had this sort of connotation with an STI. You tell yourself, oh, it's OK for other people. Yeah. But then when it's you, you're just filled with that sense of like shame and disgust.

Yumi
The day of the diagnosis, Paige wandered home in a daze.

Paige
And I walk through the doors and two of my housemates are there and I'm just kind of like so just shocked and just sad. And I say to them, you know what it is? It's herpes. And the first thing they do is they go, oh, I have that too. Oh. And oh my God, that was the best thing that they could have done. I felt less alone. It feels like I've got a little community of herpes survivors now.

Ellie
So there's herpes simplex virus type one and herpes simplex virus type two.

Yumi
This is Dr Ellie Freedman. She's a sexual health physician and STI expert.

Ellie
So both of them cause blistering and ulceration pain and they live in the nerves and come back. So they recur. That's one of the things about them that's a real hallmark.

Yumi
So herpes simplex virus type one is sometimes known as oral herpes and it's a type of herpes and is generally the one responsible for your cold sores. You know, the ones that you get when you really run down or right before an important job interview.

Ellie
And it is incredibly common. So we know just from blood testing that 70 to 80 percent of people in Australia have seen that virus.

Yumi
Just to confuse things a bit, herpes simplex type one can also cause genital herpes, but genital herpes is generally caused by herpes simplex virus type two.

Ellie
It normally causes ulcers and sores around the vulva in women and around the penis in men. It can also cause sores around anywhere in the anogenital region.

Yumi
When you say it's on men, it's on their penises. I thought it was nested in their pubes.

Ellie
It can be. So herpes is passed through skin to skin contact. The more thin the skin is, so it's that really kind of delicate thin genital skin that tends to allow the virus to pass from skin to skin.

Yumi
That's why women with our lovely, delicate vulvas are more susceptible to symptomatic herpes than blokes. Genital herpes or HSV2, while not as common as HSV1, does affect a large proportion of the sexually active population.

Ellie
So we know that type two herpes, 12 to 15 percent of the Australian population has got antibodies to herpes.

Yumi
Dr Ellie says lots of people with herpes are asymptomatic and so don't even know they have it. So how are almost one in six of us getting herpes?

Ellie
So it's spread commonly through sex and that can be oral genital sex, so oral sex, or it can be through genital spread. And the thing about herpes is the kind of kicker with both type one and type two is that most people who have herpes shed virus when they don't have symptoms. Some people never have symptoms and they still shed virus. And even people who do get episodes of herpes or occurrences of herpes will be shedding virus between those. So that cold sore in your mouth might have been caused by your auntie giving you a kiss and she may never have had a cold sore in her life, but she could have just shed the virus and given it to you. So most people don't give people the virus knowingly. It's a really important message. They're common viruses and they get spread within the population really easily.

Yumi
Okay, you're blowing my mind here, Dr Ellie, because I thought it had to be like visible sores, weeping, angry and red and itchy for it to be contagious.

Ellie
Unfortunately not. So those sores, if you have sores on the mouth in oral herpes or sores around the genitals in genital herpes, those sores are full of virus. So absolutely, if someone has got herpes sores, they're extremely infectious. But if people who have herpes swab themselves between outbreaks, we know that they're shedding herpes at different times. So it's a really difficult one because we can't ever really say to people, if you haven't got a sore, you're not infectious or if you cover things up, you're not infectious. How is it diagnosed? If I see a patient and they come in and they've got painful sores around their genitals, the commonest cause of those painful sores around the genitals is herpes. We would treat someone straight away with antivirals, especially if it's the first episode of herpes, but we also take a test from the sores, if there are sores there, and we're looking for herpes virus on those swab tests.

Yumi
Dr Ellie says that a doctor won't usually take a blood test for herpes because all it will show is that you've been exposed to the virus at some point in your life.

Ellie
But if I've got a couple and one definitely has herpes and the other one isn't sure, that might be a situation in which it would be useful to do a blood test because then we know what we're dealing with. I'd much rather treat the disease or the infection, what we see as its own thing and use the blood test really to help me understand if you haven't got the antibodies, that you might be at risk of getting it from your partner if your partner is getting outbreaks. Can

Yumi
you just give us an overview, particularly for those early outbreaks, of what the symptoms are?

Ellie
Yeah. If you have a first episode of herpes, a new infection, the virus is meeting your body for the first time and your body hasn't got any immunity to it, no antibodies. So some people, when they first get herpes, can be quite unwell. You can have a flu-like illness, fever, headache, feeling generally really run down and crappy. Some people have pain peeing because it can actually affect the nerves around the sacrum, around the area that you pee from.

Yumi
Dr. Ellie says that all those icky symptoms typically come as a warning, ting, that the blisters aren't too far behind.

Ellie
In a first episode of herpes, those blisters or ulcers will tend to be widespread. So just not widespread over your whole body. It's not like having chickenpox, which is also a herpes virus or measles, but you will get sores kind of widespread over the area they're affecting, so over the genitals generally in herpes type 2. And those ulcers in a first episode can keep cropping.

Yumi
It's like a painful whack-a-mole. Those little buggers just keep

Ellie
popping up. So you could have a first little few blisters and then a few more, and that can go on for a few days. Then for most people with type 2 herpes, especially after that first episode, you're likely to get three or four occurrences in the first year after diagnosis.

Yumi
You might be listening to this and freaking out, but Dr. Ellie says there is some good news.

Ellie
If I see those poor people who are having a really nasty first outbreak, it will never be that bad again. It will never be like that again. So what you're saying is it'll never be as bad as that first one? It'll never be as bad as the first episode. It tends to just be a recurrence of those little blisters and ulcers, often with a lot of tingling. And in time, as your body's immune system gets better at dealing with the virus, most people's symptoms will burn out by themselves.

Yumi
Despite the fact that physical symptoms of herpes reduce over time, the stigma lingers.

Ellie
I think a first diagnosis of herpes is really unpleasant and devastating. I think the stigma is really upsetting for most people. And because the herpes virus is so common, these are often young people at the beginning of their sexual career. They may not be in a long-term relationship. There's a lot of things to navigate when you're a young person having sex anyway. And being told that you've got a disease that everyone's heard of, that most people don't know very much about, is really challenging.

Yumi
Of course, it's not just young people getting herpes. Women in the middle management stage of their sexual careers are also getting it. Meet Marlene.

Marlene
She said, you do have an STD and shock horror when someone says that to you. Because you know, I was 50 and not really prepared for that in my life.

Yumi
When we speak to Marlene, she's in rural Queensland working on a mine site, hence the bird noise.

Marlene
In the middle of bumfuck nowhere.

Yumi
Oh my God, I used to live there. Before her diagnosis, Marlene had been separated for six months from her husband before meeting a real gem of a guy. A few months in with the new bloke, Marlene noticed a bit of bleeding during intercourse.

Marlene
I went back and saw my women's health clinic at the hospital and she had a look and she said, oh, you've got a little polyp. She said, how about we whip that out? And she said, I'll do a test. She said, well, we're there, let's do an STD test. And I thought, yeah, okay, let's do that. I went back for the results of what the polyp was. It was gone on, of course, but she said, oh, by the way, you've got herpes. She must have seen my face was a bit shocked. She said, look, have you had a breakout? I said, no, not that I know of. I didn't even realise.

Yumi
Marlene, before the doctor told you that you had herpes, what did you know about it?

Marlene
Very little, actually. I had never had like a cold sore. I was always very weary of people who could have herpes or the virus and wouldn't use coffee cups. Had my own coffee cup at work. Yeah, right. Was quite anal with it, actually.

Yumi
Marlene's doctor gave her a script for antivirals.

Marlene
She said, as soon as you get a breakout, she said, get onto these, they'll sort it out for you.

Yumi
Marlene's first breakout happened about four months after being diagnosed with herpes.

Marlene
I was very uncomfortable. At that time, I was a postie, so I was riding a little Honda around and I was really uncomfortable and I was thinking, what is wrong with me? I went to the toilet and had a look and the smallest of smallest little tiny blisters, like in a small patch, you know, close to my lip but not on it, just near it. And it was not even the size of a little fingernail. It was so small, yet so mighty. It was like a burning sensation and a throb almost.

Yumi
So you had like one single sore or was it like a crown of sores around your clitoris?

Marlene
A little tiny cluster. A little tiny probably like pinhead little blisters, but only minuscule, really tiny. So you had to look for them? Yes. I put my glasses on too at the age of 50, I'll let you know.

Yumi
And tell me what did it feel like? What's the feeling? What's horrible mean? Is that like being?

Marlene
It's like painful. It's painful. It swells up. It aches. Because that's more sensitive than I think your actual, you know, lips on your mouth. Like those lips down there are way more sensitive.

Yumi
Let's face it. For people who've never had it, is it a constant burning feeling?

Marlene
No, just and if you go to the toilet and you wipe yourself, it's quite painful. Like it's like it's raw. And yet it's so small.

Yumi
Yeah. And you had to sit on a bike, on your postie bike for work. Did that exacerbate it, do you reckon?

Marlene
Yeah. Absolutely.

Yumi
Oh, you poor thing. That sucks. And then so alongside all of this, you've got a new boyfriend. Yeah. And he's a lovely man. He is a lovely man. So suddenly you're showing up with this cluster of blisters in your most private area. How did you tell him? How did you have this conversation with him?

Marlene
I said, I need to have a chat with you. He went, oh yeah, right. And I went down and saw him and we stood one side of the kitchen bench. He stood one side, I stood the other. And I said, I found out I've got an STD. And he goes, yeah, right. And I go, yeah. I said, it's herpes, you know. He goes, oh. I said, I don't know where I've got it from though. And he goes, oh, okay. Is it painful? And I said, yeah, it is. And then he said, well, what causes it? I said, well, stress can cause it. He said, well, we best not let you get stressed.

Yumi
Oh, is that really what he said?

Marc
Yeah.

Yumi
Oh, I know. Marlene was already armed with the antivirals from her doctor. So she started taking them straight away. These days, she knows when an outbreak is coming.

Marlene
I've got those with me all the time. They're in my car, they're in my toiletry bag. If I can know that they're there and I get on it straight away, I don't get a full breakout. Like, so I can feel it. If I have a look, then it's almost like a little red spot comes up first. Then the blisters will come out.

Ellie
The mainstay of treatment is an antiviral called acyclovir. This is Dr Ellie Freedman again. The way that it's normally given is that as soon as you start getting the tingling or the first outbreak, you start taking the acyclovir drug and you take that until the outbreak has finished. Some people who are getting frequent recurrences will take something called suppressive therapy, which is taking that acyclovir drug every day. And if you take it every day, we know two things. One is that you won't get an outbreak. And the second is you're very unlikely to be shedding virus while you're on the drug.

Yumi
Dr Ellie is hopeful there'll be a vaccine for herpes one day.

Ellie
We haven't had a successful one yet, but we should be able to because there are vaccines against other similar viruses like the Shingles vaccine. So there's no scientific reason why we shouldn't be able to come up with a vaccine against herpes.

Yumi
Maybe in our lifetime. I hope so. Tell me about what having herpes means for your sex life.

Ellie
First of all, having herpes shouldn't really have a big impact on your sex life. We should be advising everybody to be using condoms if you're having sex with someone and you don't know whether you or they have an STI.

Yumi
Sound advice.

Ellie
What I hear from my patients with herpes is that, especially when they're first diagnosed, they feel like they're never going to want to have sex again or be able to have sex again. And then all those questions about what do I tell people? Do I have to tell people? Am I putting other people at risk? So the advice for that is at some stage, if you're going to be in a long-term relationship with someone, I would definitely advise you discuss it and tell them. If you're using condoms every time you have sex, you're really reducing your risk of passing it on. And it shouldn't be the first thing you say to someone when they ask if they can buy you a drink. Hello, I'm Ellie. I have herpes. Yes, I'd like a vodka and tonic. We don't need to start with that. OK. The herpes doesn't define who you are.

Yumi
What are the guidelines when it comes to disclosing a genital herpes diagnosis to, say, a partner or future partners?

Ellie
So the guidelines are that you have a duty to disclose infections, whether that's a sexually transmissible infection or other infections, or to take reasonable precautions to protect them. So that's why if you've got... You know you've got herpes, we would say if you've got an obvious outbreak, that you probably shouldn't be having sex with people, or you should be disclosing, you know, I've got an outbreak of herpes, do you still want to have sex with me? If you haven't got an obvious outbreak, but you haven't disclosed to the person that you've got herpes, you should be advising condom use or using condoms.

Yumi
Dr Ellie, why do you think there's such a stigma around genital herpes?

Ellie
Stigmas by their very definition are formed by prejudice and ignorance. And I think that if you say to people, you know, what's the worst thing you can think of, then herpes is up there. People's imaginations run riot, it becomes a byword for sexual promiscuity, or the worst thing that can happen is to have herpes. So I think that a lot of it is around myth and things that aren't true. But I also think a lot of it is around the fact that we have a good treatment, but we don't have a cure, and we don't have a vaccine, and it is associated with sex. And we like stigmatising anything to do with sex, really.

Yumi
Remember Paige, who had to take three trips to the doctor to get a herpes diagnosis?

Paige
I haven't had sex with anyone else since. I'm still kind of figuring it out, but I'm just going to be, like, open enough.

Yumi
Let's take it to you. Say you're dancing at a club. I don't know if people still do that, but let's just say you are. Yeah, oh, I still do that. And you meet someone and, like, you're vibing, and there's eye contact and there's chemistry, and they say, let's go back to my place. Yeah. When do you talk about herpes with someone new?

Paige
That is a great question, because I'm like, this has not happened yet, so I'm literally working it out on the fly. Um... I would say, like... Mmm... I'd want to be dancing with them, probably, like, kiss them as well. It might happen that we go to their place or they come to mine, and then, like, when we get into my room, it's like, oh, you know, just letting you know this is what I have. And then if they say, oh, I don't know if I can do that, I think then I have to hold myself in that power of going, OK, no worries, maybe, like, we can just, I don't know, spoon or something.

Yumi
Paige has come a long way since that day in the doctor's surgery.

Paige
It's so shrouded in shame, and yet it's actually really common. No-one chooses to have this if they don't want to have it. And it's also the least interesting thing about me. Well,

Yumi
God forbid your herpes diagnosis is the most interesting thing about you. Given that herpes is so common, whether you have it or are absolutely sure that you don't, take this as another useful reminder that we should be using condoms when having hetero sex, especially with short- or medium-term partners. And being experienced in middle management sex does not shield you from STIs. If you feel burning, tingling or genital pain, go to the doctor and ask for a swab for the herpes virus. They won't judge you. For a doctor, it's as common as one of us popping out to buy a packet of chips. Our chips are their herpes, right?

Yumi
And if you are recently diagnosed, antivirals are your friend. Get a prescription and have them ready to annihilate that virus at first tingle. You could also decide to go on them regularly as a proactive measure. Totally your choice. Ladies, you can have herpes and a fun, active and amazing sex life. One doesn't cancel the other out. And remember what Dr Ellie says, the first time is always the worst. If you like this show and wanna spread the word, kind of like spreading an STI, oh my God, is it too soon? Please tell your friends about us. Share it, spread the word. It makes a huge difference. Thank you, love you.

Yumi
This podcast was produced on the lands of the Gundungurra and Gadigal peoples. Ladies is mixed by Ann-Marie de Bettencourt. It's produced by Elsa Silberstein. Supervising producer is Tamar Cranswick and our executive producer is Alex Lollback. This series was created by Claudine Ryan.