Why genital herpes does not mean the end of your sex life

A herpes diagnosis was not what Paige was expecting to hear from her doctor after a week of fatigue and some itching around her vulva.

"I just burst out crying, from just shock and I think grief," says the 29-year-old from Melbourne/Naarm, who asked us not to use her real name.

"I think it was because I didn't know much about it … and also, I hate to say it, but … you tell yourself it's OK for other people.

What did make Paige feel better was the response she got when first sharing the news.

"I walked through the doors [at home] and two of my housemates are there.

"And I say to them, 'You know what it is, it's herpes'. And the first thing they do is say 'Oh, I have that too.'"

Genital herpes is one of the most common STIs: between 12 and 15 per cent of people in Australia have it.

And lots of people with herpes are asymptomatic, so don't even know they carry the virus.

But despite being quite common, many of us still find it extremely hard to talk about. And people worry it means the end of their sex life.

ABC podcast Ladies, We Need to Talk finds out what it is like to be diagnosed with herpes, how to disclose it to a sexual partner, and why it's not something that defines you.

What is herpes?

Genital herpes is generally caused by herpes simplex virus (HSV) type 2, explains Ellie Freedman, a sexual health physician with expertise in STIs.

But the more common HSV-1, known as oral herpes or cold sores, can also lead to genital herpes through oral sex.

Up to 80 per cent of people in Australia have HSV-1.

"Both of them cause blistering and ulceration pain," Dr Freedman says.

Genital herpes normally causes ulcers and sores around the vulva and penis.

"It can also cause sores around anywhere in the anogenital region [the anus and the external genitalia]," Dr Freedman says.

A "real hallmark" of herpes is that it can have recurrent outbreaks, she explains. That is because the virus lives in the nerve cells, establishing a dormant infection for life.

It's mainly spread through skin-to-skin contact during sex, and because many people don't even know they have it, they don't always take the proper precautions.

"The thing about herpes is, the kind of kicker with both type 1 and type 2, is that most people who have herpes shed virus when they do not 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."

Outbreaks lessen over time

Dr Freedman says when people first contract herpes, they may experience flu-like symptoms as well as the blisters.

"In a first episode of herpes, those blisters or ulcers will tend to be widespread … over the area they're affecting.

"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 recurrences in the first year after diagnosis."

The first outbreak is always the worst, says Dr Freedman.

"In time, as your body's immune system gets better at dealing with the virus, most people's symptoms will burn out by themselves."

Disclosing you have genital herpes

A diagnosis of herpes can be "really unpleasant and devastating", says Dr Freedman.

"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."

She says patients will often say they never want to have sex again, or feel they won't be able to.

"And then all those questions about what do I tell people? Do I have to tell people? Am I putting other people at risk?"

Dr Freedman says that "Hi, I have herpes" doesn't need to be something you open with when meeting a potential sexual partner.

But you do have a duty to disclose infections or take reasonable precautions to protect others, Dr Freedman says..

"Whether that's a sexually transmissible infection or other infections."

If you have an obvious outbreak of herpes, Dr Freedman says you should be disclosing that, or you probably shouldn't be having sex with people.

"If you haven't got an obvious outbreak, but you haven't disclosed the person that you've got herpes, you should be … using condoms."

Dental dams can also help stop the spread during oral sex.

Paige hasn't had sex with anyone since her herpes diagnosis. But she has an idea of how she would handle disclosing when the time comes.

"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 spoon or something.''"

Contracting herpes while in a relationship

Marlene says she was not prepared for a herpes diagnosis at 50.

The now 53-year-old, who asked we don't share her surname, lives in regional Queensland. Before her diagnosis, Marlene had been seeing someone new after the end of her marriage.

A few months into the relationship, she noticed a bit of bleeding during intercourse.

Marlene underwent some testing and says a herpes diagnosis was a shock, given she hadn't noticed any blisters.

Her first breakout came about four months after being diagnosed.

"It hurt. It's painful. It swells up. It aches."

Marlene broke the news to the man she was dating in his kitchen.

"I said 'I found out I've got an STD … I don't know where I've got it from, though."

Marlene says he asked if it was painful, and what caused it. She said stress can be one trigger.

"And he said, well, we best not let you get stressed."

Herpes doesn't define you

While there is no cure for the herpes virus, it can be managed with medications.

Marlene keeps antivirals handy for when she knows an outbreak is coming.

"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."

Dr Freedman says herpes shouldn't have a "really big impact" on your sex life.

She says a lot of the stigma around herpes is because people don't know much about it, but there is good treatment available, even if there is no cure.

"We should be advising everybody to be using condoms if you are having sex with someone and you don't know whether you or they have an STI.

"If you are using condoms every time you have sex, you are really reducing your risk of passing it on."

Paige says there shouldn't be so much shame around herpes.

"It's actually really common. No-one chooses to have this.

"And it's also the least interesting thing about me."