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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 this article on stigma as a PDF if you wish.)

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?

The history of the genital herpes stigma dates back a mere 30 years. Before then, the condition, which was first named by the Ancient Greeks, was well known to doctors – but it was not invested with the terror it commands today and the word herpes barely registered with the public.

Continue reading How herpes got its stigma

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Sun on Sunday – 29-4-2012: ‘I’ve had sex with eight men even though I know I’ve got herpes’

Student, 19, puts lovers in peril

By JENNIFER TIPPETT   Published: 29th April 2012

With comments on each point, by the Herpes Viruses Association, in red:
A RECKLESS teenager told by doctors that she had one of the worst cases of herpes they had ever seen has confessed to bedding EIGHT lovers since she was diagnosed.
But she told them all and used condoms and avoided sex after an outbreak.  This is far more than people who have had facial cold sores do – and genital herpes is a cold sore in a different place.

Astonishingly, misguided Marquita Church, 19, thinks it’s her right to sleep around without taking precautions.

The student said: “The majority of guys ask to NOT use a condom — so I don’t feel bad.  That is their choice after she has informed them.  If she has no symptoms they are taking a very low risk.

“Most don’t ask about my sexual history and if they do, they don’t care. It’s their responsibility as much as mine.  Correct.

“I love sex so I’ve slept with eight men since my diagnosis without protection.”

Again – that is their choice.  Nobody expects people who have had a facial cold sore to use ‘protection’ every time they kiss someone.

Scarily, she added: “It’s probably silly and reckless, but life is too short to give up things you love — and I love sex.”

Marquita, from Newquay, Cornwall, caught herpes from one of her many partners three years ago when she was just 16.

She still carries the virus and can pass it on through sex — especially if she is suffering a flare-up of symptoms at the time.  Except that she makes a point of saying that she is not having sex when she has flare-ups.

Marquita, who became sexually active at 14 and is on the Pill, told how doctors diagnosed a severe case of herpes when she was taken ill — just two months after being treated for chlamydia.

She woke one morning with a stinging red rash all over her genital area and legs. By the end of the day the entire area was covered in blisters.

She added: “Two days later I had a sky-high temperature, I couldn’t wee and my bladder was swollen. I felt so unwell.”

Marquita’s worried parents took her to hospital, where a doctor recognised herpes — and said the sores had become infected.

The teenager recalled: “He told me it was one of the worst cases he had ever seen. It had spread to my bladder, bowels, digestive tract and even my throat.

This is bad luck: a few people get bad primary symptoms and 80% get no symptoms or only very slight symptoms.

“He told me the herpes virus would be in my system for life and that I can pass it on to anyone I have sex with. He also said that I was most infectious when the symptoms show and for six weeks afterwards.”

This is incorrect.  The risk of transmission will be very low from about four days after skin heals following an outbreak.  Six weeks is quite wrong.  Saying that the virus is ‘incurable’ or life long’ is a scare tactic that dates back to the original antiviral drug marketing campaign in the 1980s.  Chickenpox, glandular fever and even thrush are also ‘incurable’ and ‘life long’ but nobody talks about them in this negative and prejudicial way.

When she was allowed home from hospital a few days later, her parents were silent.

She said: “They were clearly disappointed and I felt bad. I couldn’t imagine ever having sex again. I felt cheap and dirty.”

That didn’t last long.

Three months later Marquita — who says she is allergic to ordinary latex condoms — was back having unprotected sex.

She said: “I got my libido back and managed to get with my conquest at a party. The non-latex condoms are just too expensive so I didn’t bother being careful. At the crucial moment, I asked him whether he minded not using one and he said no.

“That was when I realised most guys don’t care and I slipped back into my old habits.”

Again, this is their informed choice and they are running a very low risk.  The risk for them would be higher if they had sex with an undiagnosed partner with minor symptoms – and there are far more of them.  Marquita is being responsible. 

Marquita’s symptoms have flared up a few times and she says she then avoids sex for six weeks.  See above – this is longer than necessary.

But she revealed: “Since being diagnosed, I have slept with eight men and nobody has ever come back and said I’ve given it to them. I have always given the men the opportunity to say no.  So what is the problem?

“For most guys, it seems that sex with me is worth the risk.”

Marquita, who says she has had 25 sexual partners, is dismissive of the problems herpes could cause if she gets pregnant.

There is an increased risk of miscarriage — and if she has a flare-up at the time of birth she would need a Caesarean to avoid a risk of the baby going blind.

This is incorrect.  There is no increased risk of miscarriage for women who catch the infection during pregnancy [recent statement by the Royal College of Obstetrics and Gynaecology].  A Caesarean is only routine when the mother has been newly infected at term.  Most women with genital herpes give birth naturally even if there are symptoms at the time of birth because the baby is protected by antibodies that are passed from the mother while the foetus is still in the womb.  

 She said: “I don’t worry about that yet. If it turns out I can’t have kids, I’ll deal with it. There are other options — surrogate mums, fostering, adopting. I am not going to stress about it yet.”

Marquita now has a boyfriend who she has been seeing for three months. She claimed: “It doesn’t bother him — but we practise safe sex to protect him.”

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Why aspirin may help to prevent recurrences

From SPHERE 19/3, December 2004  – you can download a PDF here.

An old tip is validated

One of the tips that the Herpes Viruses Association has long recommended to prevent recurrences is to take a low dose of aspirin daily. This was originally suggested to the HVA by Dr John Oates, who advised us in the early days of the charity – and wrote a book about herpes simplex (now out of print). His explanation for its use was that aspirin lowers the prostaglandins that cause inflammation and should reduce the severity of symptoms. Many members over the years have found this advice helpful.

We often suggest that taking half an aspirin a day for a couple of weeks before a holiday or honeymoon may be worth trying.

Two members have reported that after being prescribed low daily dose of aspirin for a different
medical problem, all their herpes simplex recurrences have stopped.

New inflammation hypothesis

Now an Open University student has provided further evidence to support the aspirin idea. Project manager Gary Smith has been studying the phenomena of inflammation and has questioned received wisdom on the reason for it. Up to now, most doctors and scientists have believed that when an infection starts to attack the body, inflammation is part of the immune response’s attempt to contain the infection. Gary’s theory is quite different. “The inflammation is not the body trying to fight the infection, it is actually the virus or bacteria deliberately causing inflammation in order to hide from the immune system,” he said.

Next time try aspirin

This means that inflammation is unhelpful and our immune systems work better without it. The theory is attracting attention from medical researchers worldwide. Which brings us back to our long-standing advice about aspirin. This old and popular drug is renowned for its ability to reduce inflammation. So next time you have a recurrence, or think you are about to have one, be sure to take a regular dose of aspirin. It should reduce inflammation so that your immune system has an easier time clearing up the infection.

Notes:
Consult a doctor before taking any over-the-counter medication long-term.  Aspirin should not be given to children under 16 because there is a low risk it can cause Reye’s syndrome.  Adults should be cautious about taking aspirin if they have stomach problems.

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Genital herpes – the answers

by Dr Laura Waters, a GU doctor at the Chelsea & Westminster
On Saturday 17th September [2005], Dr Laura Waters gave us a talk on ‘Herpes simplex –transmission and prevention’ supported by a ‘PowerPoint’ presentation. She covered herpes simplex from diagnosis, through symptoms (with photos!), treatment and transmission.

Incidence

  • At sexual health (GUM) clinics, more than 80% of people attending (not for herpes simplex) have antibodies to herpes simplex type 1.
  • 50% of new cases of genital infection are caused by herpes simplex type 1.
  • 20% of sexually active adults have herpes simplex type 2.
  • Most of these people with herpes simplex are unaware of it:
  • One in four will have clinical symptoms significant enough that s/he seeks diagnosis and
    treatment;
  • Two in four will recognise their symptoms after a counselling session describing all the
    variations they might have;
  • One in four has no recognisable symptoms – however even s/he has symptoms eventually.

Typical symptoms

It starts with flu-like illness and then blisters develop, burst and heal.  However some patients may have symptoms that are more like:

  • recurrent cystitis
  • thrush
  • eczema
  • sweat rash
  • flu

[Patients may also experience herpes simplex as: a little cut, a sore place, an itchy place or an infected hair follicle.]

Dr Waters told us that when doctors diagnose by appearance only [no swab test results] then they are likely to be wrong two thirds of the time!

Serological testing [blood test for herpes simplex antibodies]

The test is not used to diagnose herpes simplex as it takes 8 to 12 weeks for the antibodies to be formed.  So this test cannot be done during the first illness.
Partners of people who know they have herpes simplex can have this test at Chelsea & Westminster Hospital: if the partner tests positive then s/he cannot catch it again and they do not have to take care with prevention. [You will not reinfect the partner you caught it from, on any part of his/her body.]  According to 200 patients at Leeds GUM questioned by Fairley and Monteiro (1997), 92 per cent expect to be tested for herpes simplex when they go for a check-up. The reasons that the serological test is not part of a check-up are:

  • the test is only 95% accurate and is less accurate in people who are unlikely to be infected (and conversely more accurate in people who have been more at risk)
  • as a result of the this inaccuracy, medical staff are unsure how to explain the results to patients
  • tests cost around £25.00
  • a proportion of people don’t want to know (if they are not getting symptoms, they cannot protect partners anyway)

Types 1 and 2

The virus remains latent [asleep] in the sensory nerve ganglion [junction box] near the spine at the level where infection occurred. Recurrent symptoms occur in the area served by that ganglion.

Frequency of genital recurrences

  • Type 1 recurs on average 0.08 times a month in the first year, in other words: once a year
  • Type 2 recurs on average 0.34 times a month in the first year, i.e. 4 times a year.

Treatment

Aciclovir is the most commonly used antiviral therapy. It can be taken just when you have an outbreak, or on a regular basis to prevent outbreaks.  When lecturing to doctors, Dr Waters explains to them that it can be used:

  • to control symptoms
  • where there is complicated disease [such as urine retention, or erythema multiforme*]
  • when the patient has relationship concerns i.e. in a new relationship
  • where patients have multiple partners
  • to reduce transmission
  • to prevent an outbreak when giving birth – however C-sections are not necessary even if there is a recurrence at term.

Aciclovir has been under surveillance for 13 years and has shown no health implications. When a person stops taking it, they should expect a rebound outbreak 4-5 days later.

A trial followed 1484 couples, where the partners were all at risk of contracting herpes simplex. In the course of a year, taking antiviral drugs every day lowered the risk of infecting the partner from 3.6% risk to 1.9% risk. The drug used was Valtrex as this drug is still under patent. However herpes specialists are confident that taking aciclovir would give the same result. [This is relevant to patients as Valtrex costs the NHS five times more than aciclovir, so doctors are more likely to prescribe aciclovir.] No trial will be done with aciclovir as this is now a generic drug, so that no one drug company would make a large profit from this drug.

Asymptomatic shedding

Over the course of 6 months, women rubbing a swab around their genitals twice a day were found to have virus present on 6% of days without drugs and on 0.4% of days if they were taking antiviral pills.
Asymptomatic shedding occurs less over time: 10% in first year – less in following years. It occurs less in people with fewer symptoms [and more in people with more symptoms.]

Solution

Dr Waters wound up her talk by telling us that the solution to herpes simplex will be a vaccine still to be developed, that would prevent it being caught in the first place. Tests are proceeding on young women. [This vaccine did not work out and has been shelved.] She did not expect new drugs to be available in the near future but hoped that existing drugs and tests would be used more extensively.

She ended by pointing out that destigmatising herpes simplex would be the ultimate solution.

Report compiled from Dr Waters talk by Marian Nicholson

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Dr George Kinghorn’s talk, 2002: “An Update on Herpes Simplex”

Dr Kinghorn is the consultant in genitourinary medicine at the Royal Hallamshire Hospital, Sheffield. He is very interested in the herpes simplex virus and is a member of the Herpes Simplex Virus Advisory Panel, which is a sub-group of the prestigious British Association for Sexual Health and HIV. He is also a member of the Independent Advisory Group for Sexual Health and HIV/AIDS which advises the government on sexual health services. Over the years, we have sent him some ‘difficult cases’ which he has been able to sort out with ease!

He gave the ‘annual talk’ to members of the Herpes Viruses Association in 2002. Afterwards, he answered our questions – read on Continue reading Dr George Kinghorn’s talk, 2002: “An Update on Herpes Simplex”