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Why has my herpes got worse?

If you have had the virus for a while, we expect you will have symptoms less often and more mildly. But we do get people calling our helpline who ask “Why have my herpes episodes got more frequent, now?” This is a fairly common question.

Typically, the caller will tell the helpliner something like this: “I’ve had it for 8 years now. After the first year or so, I hardly got any symptoms. Maybe once or twice a year. Now, this year, for about the last six months, have had breakout after breakout. Why? And what can I do about it?”

The good news

We can tell the caller that the good news is that their body clearly knows how to control the virus. After all it has done so for years…  There are a few people who do get recurrences at the same level as in that first outbreak and for them, there is the option of taking antiviral pills. These are taken either daily or by zapping it each time it starts up.

So, since the caller’s immune system used to be able to control the virus, why isn’t it doing it now?

The not so good news

Something has clearly changed in what your body is being asked to do. There is only so much it can achieve in a day and when it is, for instance, fighting a cold or fever, your body concentrates on that and stops bothering to make the proteins that control herpes the simplex virus. The result is we get an outbreak/episode: and these are commonly called a ‘cold’ or a ‘fever’ blister.

What tasks are requiring your body’s attention that are more important than stopping blisters on your skin? See if any of these factors could be affecting you:

You need your muscles to be in good shape to ‘fight off a sabre-toothed tiger/bring down the mammoth for dinner.’  This means that when we, modern humans, demand our bodies to build better muscles so that you can take part in a marathon, this is a more important task for your body than controlling virus.

You need to deal with the effects of too much alcohol, smoking, or other things that we know are bad for us.

You need to deal with the negative effects of lack of sleep. Perhaps the twins are keeping you awake with their teething miseries…

Perhaps you have changed your diet and are not getting the required nutrients. One person who had changed to a vegan diet found that when he really worked at getting the protein his body needed, the recurrences returned to ‘normal.’

Stress could also contribute to more recurrences. Has your job changed? Is your family stressing you out?

Or perhaps you are in a new romantic situation. We know that thinking about the virus can trigger recurrences in some people. It did that in me in the early days. So maybe the worry about when and how to mention it, or whether or not to take suppression treatment, is raising your cortisol levels and triggering the recurrences. 

More of the good news

If you can work out what has changed, you could return your body to the ’good state’ in was in before. 

Published 6/2/2024

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Why don’t I have my herpes on face and genitals?

A common question by callers on our helpline (0845 123 2305) is often “Why didn’t I catch herpes on my face and genitals? We did oral sex as well as regular sex. So surely I should have seen symptoms in both places instead of only on my genitals.”  

We have not found any medical papers on this topic, although “having herpes on genitals as well as face” is something that is mentioned in reported case histories of individual patients.

Two possible reasons that I have thought up:

Continue reading Why don’t I have my herpes on face and genitals?
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Two-for-one! A story about sex lives

The biggest perk of this job by far is making a difference in people’s lives and giving people the tools to reclaim their confidence and their sex lives. Occasionally, people who call us in a state of anxiety about telling a partner ring us back to let us know how it went (something we encourage, we love a happy ending) but for the first time yesterday I had a two-for-one.

Continue reading Two-for-one! A story about sex lives
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How herpes got its stigma

“It is easier to fool people than to convince them that they have been fooled.” – Mark Twain

You can download a PDF of this article.

An article by Nigel Scott

For anyone in the twenty first century it is hard to believe that there was a time when ‘herpes’ was not a stigmatised and feared condition. But this is true. Less than forty years ago genital herpes was largely ignored. Newly diagnosed patients were not made to feel that a common skin condition had just ended their chance of having future relationships.  Doctors knew that they were simply dealing with the manifestation of the common facial cold sore on a different site and they treated it appropriately. In the early 1980s things changed. How and why did this happen?  

Continue reading How herpes got its stigma
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Stigma: who benefits?

By Cameron Poole

Since stupidity, division, snobbery and general unpleasantness continue to thrive among us humans, one might argue that stigma doesn’t need challenging. It fits very well into modern society sitting comfortably somewhere between babyishness and insecurity as a normal human behaviour.

Stigma is primarily defined as A mark of disgrace associated with a particular circumstance, quality, or person’. It does not say if the mark of disgrace in question is in any way justified or rational.

The human condition

Perhaps one of the biggest flaws of the human condition is this silly need to separate ourselves from others so as to feel superior. It is something we may all have been guilty of at some point or another. It makes us feel better at the expense of others, and in the purest examples it provides comfort to those with little to feel proud about themselves.

Continue reading Stigma: who benefits?
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Cold Sore Paradox Exposes Absurdity of Herpes Stigma – by Anne (guest blogger)

The drop in the number of people who have caught a cold sore in childhood has led to an increase in genital herpes type 1 (and an increase in symptomatic – noticeable – cases of type 2 as well). Yet while few would view a cold sore on the lips as a problem, the exact same sore on the genitals is perceived as distressing by some. This inconsistency makes no sense. And it shines a spotlight on how ridiculous it is to spend even a moment’s thought on herpes simplex, wherever it may be.

When my first boyfriend’s cold sore on his lips was passed onto my genitals, it was definitely not the way I had imagined my first month of sexual activity to turn out. Nevertheless, I soon decided it didn’t make any sense to care about this. Even the shocking amount of disinformation and unhelpful pieces of advice I found on the internet did not change my mind. Amid all the nonsense, I also found some important bits of information that helped me dismiss the idea that I should think about this in any other way thank the way that my boyfriend thinks about the type 1 herpes on his face. Frankly, one wouldn’t think one would need an argument for that. However, remembering how desperate I was to find some lines on the obvious truth that this does not matter, let me explain anyway, for anyone needing confirmation of this self-evidence.

Firstly, the majority of people have herpes simplex, type 1. This means that they already have immunity against this virus and cannot get it on their genitals. If you have genital herpes type 1, there is a good chance your partner is immune to catching it.

Secondly, even if your partner does not yet have type 1, it makes no sense fretting over the site of your type 1. The majority of people could give someone genital herpes. If anything, they are even more likely to do so. Herpes type 1 does not like the genital region and is less likely to recur there, than when it is on the lips. Asymptomatic shedding is also lower than when on the lips, and is rare after the first year. Assuming that people have oral as well as vaginal sex, people with cold sores are more likely to give someone genital herpes type 1 than the people who know they have it on their genitals.

Knowing this, I have never felt the need to share the fact I have this wildly common virus with anyone. Doing so would have been absurd. No one ‘discloses’ that they get facial cold sores. It has not affected my relationships, or my sex life. That is not to say that you shouldn’t talk about it with a significant other if you feel like it  – but it is nonsensical to feel like you should.

As you can see, worrying about HSV-1 transmission is senseless. Beyond that, it begs the question why some people are so focused on whether or not a virus will be caught on one site rather than the other. The obsession with not getting cold sores on your genitals while being fine with them on your face is strange. Cold sores are a minor skin irritation, and I’m not sure why anyone would prefer them in one place rather than the other. The herpes stigma is ridiculous. It’s time to debunk it.

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Pointless to ask about Love Islanders’ herpes

Most people don’t know that they have genital herpes. [1]

So, asking Love Island contestants about their herpes status is pointless. Herpes is common – for most it is a minor, undiagnosed skin condition.

You can see the full page of information here.

As I was creating the media release, I found myself thinking: are the doctors advising Love Island producers so ignorant about herpes that they don’t know that most people with it are unaware of it? (We know that for people with a bad primary infection, or frequent recurrences, that this is a surprise – but it is a fact that: most don’t have anything noticeable.) If we accept that the doctors do know, then perhaps the questions they ask contestants are to protect the producers and not really to find out who has/has not got herpes:

25. Do you currently have a cold sore or genital ulcer?

26. Have you ever had cold sores or genital ulcers or been diagnosed with genital herpes?

27. Have you ever taken medication for cold sores or genital ulcers?

By asking these questions, they are performing ‘due diligence.’ The questions will pick up one person in three who has the virus, and who has been diagnosed. But it won’t pick up the two out of three with the virus who get symptoms, but these are too mild to have been diagnosed. So it will not prevent transmission from the people who don’t realise the ‘little thing’ they have on their skin is herpes.

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My experience with HSV1

Maria (not our director Marian) sends us “My experience with HSV1” in the hopes it will help people:

I was diagnosed with herpes simplex type 1 on my vulva in early 2012 when I was 23 years old. I had an inflamed lump ‘down below’ and I went to see my local nurse who in turn referred me to a sexual health clinic in London. They reassured me that it did not ‘look like herpes’ and they swabbed the affected area. Ten days later I got a call to say that I had tested positive for herpes simplex type 1.

I immediately thought my life was over despite the girl on the phone being very reassuring telling me that it was “just the cold sore virus.” She sensed my apprehension and invited me in for a chat. Of course, in my frantic state I searched the internet looking for something that could give me more reassurance. There was little to be found other than how to “disclose” to a partner.

To this day the word disclose really irritates me. Nobody “discloses” cold sores when they are on the face. I actually ended up in my situation because of a harmless cold sore.

I met someone

When I met my now fiancé, I casually asked him did he get cold sores on his face. I felt relieved when he said he did from time to time. I was a year going out with him before I told him where exactly my cold sore had been. Why? Because medically he didn’t need to know and quite frankly, it was not his or anyone’s business where on my body I had hsv1. When I did tell him its location, he honestly didn’t bat an eyelid.

To confirm this approach was okay I spoke to an infectious disease consultant who said it was perfectly acceptable to tell a partner you have the cold sore virus in your system. There is no need to go into specifics. [Editor: there is no requirement to talk about any STI or HIV, unless the other person asks you about these. It is not a legal requirement to offer the information.] I have never had another outbreak apart from my initial one. And that really was only minor.

This is something I feel very strongly about. It breaks my heart that I spent so much time feeling guilty and ashamed just because by the grace of God this virus happened to be on my vulva instead of my lips. I didn’t do anything wrong. All I did was experience having oral sex and there aren’t too many people out there who haven’t done that. According to WHO “In 2016, an estimated 3.7 billion peopled under the age of 50, or 67% of the population, had HSV-1 infection (oral or genital).”

There are more people with this virus than without. I am sick of sensationalism in the news. It’s not fair on people and it needs to stop. It is time for people to get the facts. This should not be a burden when in fact it’s a part of life that happens to most of us whether we know about it or not. As a society we have broken stigmas in the past. It can be done again.

Editor adds: Maria’s experience of HSV1 is common. You could say that type 1 doesn’t “like” the genital region, because it rarely recurs there. You can see transmission details for oral sex here.

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Does anyone else feel guilty for having herpes?

Don’t beat yourself up for having caught genital herpes.

I was talking to a woman on the helpline. She said felt guilty for having herpes. She told me that she was metaphorically beating herself up for catching it. At a young age – and via sex she didn’t want anyway – she found she had caught this. (In fact, she was 19 – young for some, not for others.) She said that she had had more relationships, but they never lasted long, although the men concerned reassured her that it was not to do with her herpes.  Now she felt that having genital herpes was a punishment… She added that she was depressed as well. 

This is what I told her, during the course of the conversation: 

By the age of 15 one third of humans have at least one herpes simplex virus – having it ‘young’ is quite normal. Obviously, at this age most of these cases will be facial cold sores and perhaps surprisingly only 1 in three people are even aware they have it. (Two out of three have such mild symptoms, that they are not diagnosed.)

According to a study published in the British Medical Journal, some people think they started having sex too soon –  although 60% of women and 75% of men think the time was about right. Some people catch herpes from their first sexual partner, regardless of whether this was ‘too soon’ or not. That’s life, that’s chance. You don’t need to feel guilty for having herpes. Depending on the number of partners, it is something that may happen when people are quite young.  All it takes is one experience of skin-to-skin contact (with the affected part with friction) to contract the infection, and having it does not reflect negatively upon personal cleanliness or morality.

It is unfortunate to catch herpes from your first partner, but not that uncommon. And you are unlikely to stay with your first partner… Many people have been unlucky in love. It is a charming fault to fall for people too easily. Of course, the subsequent break-up is painful – you can get your heart broken. But this is much better than being a hard-hearted. You never know if you will be able to swim if you never jump in the pool.

Having herpes is nobody’s fault. Don’t feel guilty about having herpes. If you have it genitally it means you’ve had some sort of sex. But that is expected of people over the age of consent.

Herpes does not cause depression

Depression is difficult. It’s nobody’s fault. It does not respect status or situation. And herpes simplex virus does not cause depression. It is what you think about the virus that can affect your mood. If you are really depressed don’t be afraid to seek help. It can be treated. With support and the right treatment you can feel normal again. My best friend is – at last – taking sertraline and she says “It’s great to wake up every morning, and not feel like doom is about to happen.” Our worst fears are seldom realised, but knowing that may not help when the ‘black dog’ affects you.

Lastly, don’t be judgmental. Never be hard on yourself for things that you’d forgive your friends for. Ask yourself for all the issues that you are beating yourself up over: “Would I blame a friend?!”

It is just bad luck if we catch it. No one deserves bad luck. Bad luck is not a punishment for anything. It happens. Children get leukaemia. Wonderful people are killed in car smashes. Super people catch a virus and there are far more devastating viruses than herpes. The HVA can help with your herpes concerns. Then you will be able to move on.  

Take this fact to heart and move on…
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Help to get my head around herpes:

Get your head around herpes! Have you just been diagnosed with genital herpes or have you had it for ages? How do you feel? Do you think it changes anything, or everything? I’m here to tell you that you might have the wrong idea.  

When I was diagnosed, I thought my dating life was over.  

I felt shame and guilt. I thought I was a bad person, so bad things had happened to me. I thought nobody would want me.  I wasted two years in my thirties… I could not have been more wrong.   

You might feel the same way now. If you do, read on and perhaps I will be able to persuade you to look at herpes differently.

Believe me: herpes simplex is way more common than you think. If you’ve been carrying around this deep dark secret for years – or only just caught it – know this: you are not alone!

Learning more helps!

By age 25, we know that one in ten have type 2. And because of oral sex, many of the 6 in ten with type 1 may have it genitally. In fact, more than half new diagnoses of genital herpes are caused by type 1. [ref 1] [ref. 2]

Over 85% of women between 35-54 have type 1 and lots of the type 1 is genital – and over 18% have type 2. In men the figures are 8% – 10% lower than in women. [Ref. Cunningham]

Most of these people are carriers of herpes and don’t even know they have it and may  pass it on when they have very mild, undiagnosed symptoms – an itchy spot or slight rash.

So, it’s time to clear up all the misconceptions about herpes. Read the full website… Herpes doesn’t have to be a life-long problem… It may just fade away.

Don’t allow shame and worry to eat away and sap your self-esteem and self-confidence around potential new partners. Confide in someone you trust – or talk to one of our helpline volunteers who all have it themselves. Speaking about it to others before you get to the point of talking to a new partner is good – it will normalise it for you.

So, what happens when you finally meet that special person? Sooner or later you may want to have to have a conversation about it. You don’t have to, but if you feel as though you should, then you won’t relax until you do. We have a leaflet, “Talking to a New Partner” that is packed with good advice and tips – free to new members.

We have done the research and we can tell you that fewer than one in five partners will be put off. In spite of the hype, most people won’t take herpes nearly as seriously as you do. [Research by HVA found that only 17% of potential partners rejected one of our members when s/he talks about this…]

Learn to talk about it

One way to think about it is to ask yourself how a person would behave if they got occasional facial cold sores. Would they even consider mentioning it at all? Would anyone expect them to?

Lots more is discussed in our event “First Day of the Rest of Your Life” . There is a Saturday devoted to this every three months.

The atrium where we meet twice a month.