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Help to get my head around herpes. Start here:

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!

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…]

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” on 28th September.

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What You Got in the Spring Magazine

Spring 2019 – Sphere magazine (18 pages in print version, and the e-version is single column for easy reading.)

Get it sent to you by post or by email

Do you know what type of herpes you have and why it can be useful if you do? In the Spring Sphere, we give the lowdown on the types (HSV-1 and HSV-2).

In medical news, learn about an STI you might not have heard of – Mycoplasma Genitalium. It can cause fertility problems so it definitely shouldn’t be ignored. If you get a burning sensation when peeing – ask to be tested “for MGen.”

Also in medical news, read about CRISPr – molecular scissors that might be used to cut/kill virus. Is this the future of treatment? Also – there’s a new drug idea from China!

Read about our Woman’s Hour experience – Marian and two members were featured – from about minute 6.

Women – vulvas and more vulvas, proving that yours is normal.

Men – pimples and spots that are not herpes simplex. Learn the difference.

Being happy – a skill or a gift? Page 16 is a must-read!

Are you young? – we need you to advise us…

Daphne and Nancy discuss the ‘the day’ – next one 27th April.

> > >  continued below the advert:

‘My Story’ from Elaine is one of the most dramatic we have featured – you won’t want to miss it.

Timings and details of ‘THE DAY’ on April 27th – and remember to check events page: https://herpes.org.uk/events/

Save the date – 22nd June, 2-6pm

We will have a talk from a GUM doctor on “What I tell my patients” and from an inspirational speaker on “Getting your head around something” – she’s so good this is the third time we have invited her! This event is for members only – sign up now!

Continue reading What You Got in the Spring Magazine

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Media lies about herpes … as usual!

You may have seen articles in newspapers/online about ‘herpes in astronauts’. If you haven’t, don’t bother to search – they are uniformly misleading. Not just in Metro which you might expect, but even the Independent got it wrong. As we have written before, journalists only know about one type of herpes and assume the scientists are writing about genital herpes, whether they are or not!

Key Points:

As you might expect, any condition that reactivates when a body is under stress is likely to show up in astronauts. Now, after 60 years of men-in-space, scientists decided to measure the amounts of 4 different herpes viruses in saliva and urine. In about half the astronauts, they found shingles and two kinds of glandular fever present during space flight. In conclusion, it is useful for the astronauts to know that they should not kiss vulnerable people when they land, as the glandular fever-like viruses will continue to be present in saliva for up to a month after a long flight.

What the Frontiers in Microbiology, Feb 2019, reported:

“Currently, 47 out of the 89 (53%) astronauts from shuttle-flights and 14 out of 23 (61%) astronauts from ISS [longer] missions shed one or more herpes viruses in saliva/urine samples.”

There are 8 herpes viruses that humans may have, including chickenpox/ shingles (VZV) and several glandular fever-like illnesses EBV and CMV.

Continue reading Media lies about herpes … as usual!
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We talk on Woman’s Hour – BBC Radio 4

Jenny Murray and Jane Garvey host Woman's Hour
Marian Nicholson (HVA director) and two members, Jess and Sylvia, were interviewed for 20 minutes by Jane Garvey. This was for Friday 22nd February’s Woman’s hour. Then the editing reduced this to 12 minutes. This shows that they liked it, because originally we were told we’d only have 7 minutes!
Hear it on BBC Sounds – at the 6 minutes point. We did our best to destigmatise the issue. Sylvia and Jess were brilliant (thanks ladies) and talked about how their partners were OK with it. Marian talked about how very, very common it is. Listeners have told us the editor did a good job!
If you would talk about your experience to help get rid of the stigma, let us know. It could be in print media, on radio or even TV! Email [email protected]
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Laura’s letter to her younger self

Dear Laura,

I know exactly how you’re feeling. You’re 26, and you’ve just found out from the doctor that you have herpes. You’ve just burst out crying in front of the awkward-looking trainee GP. You feel like your whole world is over, you’re damaged goods and no-one will ever want to have sex with you again.  

You’re going to spend the next week in the flat, crying, downing wine and despairing at the terrible injustice – you only had sex with him one time! And you didn’t even really like him!

Well I’m pleased to say that ten years’ later, you’re doing great! Yes, at the beginning it was difficult, and maybe you did avoid some romantic encounters because you felt insecure about having to tell someone you had herpes. But then, about a year later, you met Steve – such a great guy. You waited until you’d been out a few times, and you were about to get near to having sex, and then sort of blurted it out. And he was absolutely fine about it! You ended up dating for almost a year, and then after that you went on to have three more really happy relationships. No tears, no rejection – everyone you told basically shrugged their shoulders and never mentioned it again. 

Married now

Then you met the person that you would end up marrying. You were really nervous, because you knew she was someone special. Spent the whole meal trying to eat your dinner and follow the conversation, with heart pumping at deafening volume. Well that was an anti-climax – again -just a shoulder shrug and ‘oh, I don’t know much about it but I’m not bothered at all’. Cut to 5 years later, and we’re still going strong.

So what I’d love to be able to do for you (and everyone who might be going through something similar) is give you a giant hug and tell you that IT WILL BE OK! You are the person who will be the most worried about things – not your future partners. They will choose you because they fancy you and love you – as you would for others, because why on earth would you not go out with someone because of a skin condition? How ridiculous! And if you do come across someone who judges you on the basis of that skin condition, do you want to waste your time with someone like that? There are so many good ones out there.

Honestly the hardest thing you’ll have to get over are your own feelings of shame and embarrassment – and you’re still working on it (that’s why I’m using a pseudonym here). But there are people like Marian and Nigel trying to break down that stigma, and in time maybe you’ll work up the courage to be 100% open.

But in the meantime dry your tears, and try not to worry too much about the future, because it’s a really really happy one.

Lots of love, you +10 

Xx

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Stop scaring mums-to-be

We say “Stop scaremongering baby deaths” 

Death from neonatal herpes is rare and screening mothers is unlikely to help.

The tragic deaths of several babies from neonatal herpes infections have been widely reported this year.[1] Despite scary headlines, it is rare for babies to be affected: nature has ensured that new-born babies are protected. Most medical professionals never see a case of a baby with herpes in their entire career.

Herpes is a highly unusual cause of neonatal death

Neonatal herpes infections are serious but rare. Total UK infant mortality from all causes is about one third of 1% in the first year. Death from herpes simplex infections affects 0.0016 of babies,[2] – a tiny proportion of these deaths.

Continue reading Stop scaring mums-to-be

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Thrush or herpes?

How should I treat thrush (candida), when I have genital herpes?

Thrush is also known as candidiasis or a yeast infection.

It is widely thought that that using a thrush cream to treat a yeast infection can make a genital herpes outbreak worse. So if you have both at once, it is best to use a pill (oral medication) to get rid of thrush: you can buy fluconazole pills (brand name Difflucan or Canesten) at the chemist or it can be prescribed by your doctor. One dose should be enough.Woman taking a thrush pill

First of all, it may be an idea to make sure that thrush is actually what you have. American studies show that two-thirds of women who buy over-the-counter thrush treatments don’t have a yeast infection at all.

Problems may also be caused by ‘jock itch’ – another itchy rash, often in the groin  Continue reading Thrush or herpes?

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We did oral and regular sex – could I have herpes on my face too?

It is surprising that people rarely catch it on the face as well as on the genitals! When you consider how often we do oral sex and ‘normal sex’ on the same night.

Cartoon woman points at her mouth
Is it a cold sore?

This is a common story/question that we get on the helpline/by email:
“I was diagnosed two months ago with genital herpes. I got it off my partner’s cold sore – yes, it is type 1 – and now I have something on my lip/in my mouth. [Described as a cut on lip, a lump in mouth, or an ulcer on tongue/gum]. Could this be facial herpes too – have I got a cold sore as well?”

The answer is No, that is not going to be a cold sore.

Why? When you get your first symptoms,  Continue reading We did oral and regular sex – could I have herpes on my face too?

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New cases of genital herpes

Each year, Public Health England publishes the number of new cases of genital herpes – and all STIs – diagnosed in clinics. (More will be diagnosed by GPs but these are not counted.)

This year, for the fifth year in a row, the total number of new cases of genital herpes has gone down: 32,737. And by the way, the total number of people accessing this STI clinics’ service continues to rise year on year.

In two groups, only, has the rate gone up a tiny bit: females in the 25-34 year age group, it is up slightly at 6,781 and for men and women over 66, a few more have been diagnosed each year – but only 200 men and 159 women!

The full list of all STIs (including genital herpes) is online.

But new cases of bacterial infections are up

For other conditions, the situation is more troubling: both syphilis and gonorrhoea are up. Both can be very serious if untreated, and gonorrhoea is getting almost impossible to treat as it becomes resistant to all antibiotics. (And there are no new antibiotics ‘in the pipeline’.) So use a condom with all new sexual partners until you have both been given the all-clear at a sexual health screening.

Remember that to get a diagnosis of herpes, you have to been seen immediately, while the spot is there.

The government has passed responsibility for sexual health services over to local government to commission (for the cheapest possible price). It has been noticed that almost everywhere services are getting less accessible. Services have moved out of hospitals into the community. But sometimes this means that people don’t know where to go. We hear people on the helpline telling us how hard it is to be seen, no appointment system, you have to wait ages.  At least in some places (e.g. Burrell Street, London) they give you numbered tickets and tell yo to come back in an hour or so.

If you are not satisfied – be heard!

If you want to comment, there is a template letter on this page. (Takes you to a different website) Or, more easily, you can sign the petition to maintain the sexual health services.

 

 

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Sexual health services – did you get good service?

Did you get into the sexual health clinic easily? Did they make you wait days?  The new commissioning system for sexual health services (GUM clinics) is via local authorities – it comes out of their public health budget. Sexual health is not paid for by the NHS any more.
Continue reading Sexual health services – did you get good service?