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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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What You Get in the Autumn Magazine

Autumn 2020 – Sphere magazine (16 pages in A4 print version, and the e-version is large text single column for easy reading on your phone.)

Subscribe to have it sent to you by post or by email

Each magazine has pages of research and new facts about herpes simplex – treatments and herpes vaccines!

Cover of herpes magazine Autumn 2020
Cover of the HVA magazine with lots of herpes research news as well as personal stories.

Find out what happened when Nigel Scott came to work for the Herpes Viruses Association!

Dating coach, Nikoletta, has lots of advice for ladies – men will learn a thing or two, too.

Read about the ‘virtual’ sexual health conference and the video that Marian Nicholson made to tell doctors what they need to say to patients.

‘My Story’ from Kirsty – wonderful to read other people’s experience.

Get it sent to you by post or by email

Continue reading What You Get in the Autumn Magazine

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Telling doctors about herpes

Our patron, Professor Simon Barton, was asked to do a short talk telling doctors about genital herpes, for a conference in Bucharest. Or really, he was asked to record a short video for the IUSTI virtual conference (about 700 delegates in 46 countries). He invited Marian Nicholson, our director, and Ceri Evans, the senior health adviser from Hammersmith, to join him for this ‘lecture’. He took as the topic: how we support patients in UK.

This is what we made ( use passcode: v4EdP#.T )

https://us02web.zoom.us/rec/share/__VIEfbh3H9ORY338GbCX6E6F7y4eaa82yMXr_AKmkxo72DNkuHf1aetMDFNy5ki

Marian Ceri and Simon record a video for IUSTI

Like it?  Email any comments or any questions for Dr Simon, Ceri or Marian to [email protected]

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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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Vitamin D may help to improve resistance to Covid-19. Might it also help to reduce herpes symptoms?

Helpline callers often ask whether any food or vitamin can help improve resistance to herpes simplex and prevent symptoms. Despite many claims, no ‘magic’ food or vitamin is guaranteed to do this.

Now people are asking what they should eat to make sure they don’t catch Covid-19. Or if they do catch it, how they can have a milder case. Medical experts (Covid Symptoms Study) are giving the same response as us: there is no single answer.

One coronavirus expert suggested a diet that includes a wide range of foods, with brightly coloured fruit and veg, or best of all aim for a ‘Mediterranean diet’.  This is also our advice on how to reduce herpes simplex outbreaks.

As you will have seen in the news, people with serious underlying health conditions are most at risk of having a bad case of Covid-19. It is difficult, if not impossible to make a long-term health problem disappear, so what can be done? 

As you may know, people with serious underlying health conditions are more at risk from Covid-19. What can be done? 

Medical reports suggest that people with low vitamin D levels may be harder hit with Covid-19, although experts are not agreed on how much it matters and why.

We have previously written about “Vitamin D for herpes” in SPHERE 34-1. Vitamin D can be a useful supplement for immune function and to reduce outbreaks.

Dark skin? Over 65? Vitamin D is the supplement for you

You get it naturally by sitting in the sun, (but not overdoing it). For people with light skins this means around 20 minutes’ exposure between 10 am and 3 pm in the summer months. At other times of the year the sun isn’t strong enough to help much. Darker skinned people will need greater sun exposure to benefit. 

The NHS has long been advising that, amongst others, people over 65 and those with darker skin should be taking supplements of vitamin D.  Our director, Marian Nicholson, has! She takes the recommended dose of 10 mcg (400 i.u.) of vitamin D to lessen the chance of an outbreak. And it does not just help with herpes simplex, she rarely gets a cold. If she does, it is gone in a day or so.

In addition, the Department of Health and Social Care recommends a daily supplement containing 10 micrograms of vitamin D throughout the year if you:

•    are not often outdoors – for example, if you’re frail or housebound

•    are in an institution like a care home

•    usually wear clothes that cover up most of your skin when outdoors

•    you have dark skin – for example you have an African, African-       Caribbean or south Asian background.

So perhaps it is time you tried vitamin D too? 

bottle of vitamin D pills and other pills...

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Herpes and corona virus: antiviral medication – will it help people with Covid-19 (Coronavirus)? And are people with herpes more susceptible?

The short answer is no – herpes antiviral medication will not help with flu. (This a question that we have been asked lately – of course!)

There are millions of different viruses in the world. The antiviral drugs that work to suppress herpes viruses have no impact on any of the other viruses. And this includes those that cause colds, flu and Covid-19. The antiviral medication for herpes simplex works against herpes varicella – chickenpox, but that’s it.

For more about the origins of herpes antiviral medication go to: https://herpes.org.uk/how-herpes-got-its-stigma/

Will taking antivirals make any difference to getting Covid-19?

Taking antiviral pills will make no difference to your immune response – the pills work only on the virus, not on human cells at all.

Susceptibility – should people with herpes worry more about Covid-19?

The short answer is no. (This is the other question that has come up a lot!)

At least two thirds of adults carry herpes simplex infections (facial cold sores and/or genital herpes) by age 25 – all over the world. Herpes simplex may cause symptoms in people when they are ill or stressed. But its effect on the immune system of otherwise healthy people is minimal and having herpes is not likely to make any difference to people who catch Covid-19.

People with other pre-existing conditions may be seriously affected by Covid-19. More information here: https://www.bbc.co.uk/news/health-51703892   

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Help research into herpes viruses

Help research into herpes! Have you had a diagnosis of herpes simplex type 2 – but no outbreaks in the last two years? Or perhaps you have had a positive blood test for herpes simplex type 2?

A researcher at Reading’s Royal Berkshire Hospital would like a sample of your blood.

A single “tiny tube” is all they need. They are comparing antibodies in people with type 2 who do, and who don’t, get outbreaks. This could be helpful in future vaccine research. It is hoped that a vaccine could be used to treat people with too many outbreaks in order to give a “functional cure”. (This means to “take away the symptoms“.)

Interested?  To help research: contact Dr Bret S. Palmer via e-mail at [email protected]  to find out more and how you can take part in the study. (IRAS Project ID: 260102)

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Trial seeks volunteers – for a new shingles vaccine

A shingles vaccine is offered to volunteers. Are over 50? And have you had shingles (herpes varicella)? If so, you might qualify for the trial to prove the effectiveness of the ‘other’ shingles vaccine. [Currently, the vaccine offered to people in their 70s is Zostavax. This is a single jab.]

This trial is about a two-jab shingles vaccine (immunisation). The manufacturer, GSK, is running a placebo-controlled trial. This means that you might get the real thing, or a sterile water (safe placebo) injection instead. You won’t know, and neither will the person who carries out the vaccination.

The trials are being run in Addlestone, Atherstone, Belfast, Bradford-on-Avon, Manchester, Nantwich, Poole and Trowbridge. More details on https://clinicaltrials.gov/ct2/show/NCT04091451?cond=Herpes&cntry=GB&draw=2&rank=6

Why it might interest you? A few people have reported that they have stopped having herpes simplex outbreaks after getting a shingles jab. We can’t guess why, but some found it so! arm getting shingles vaccine

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Herpes information

The HVA herpes information leaflet is called “True or False”. I took 200 to the Annual Conference of the Royal College of GPs in Liverpool 24-25th October. The delegates took 177 of them!

Herpes information leaflet on the stand

Liz Allen of the British Association of Skin Camouflage (left) Marian (right)

Doctors were glad to find materials to help their patients with all sorts of skin conditions. And the herpes information leaflet was appreciated. It offers treatment advice and also emotional support… Several doctors said things along the lines of “I didn’t know there was this kind of support for my patients and they can be very upset about it.” And a couple of doctors even thanked us for having the stand!!!

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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.