WINGS OF DESIRE
One in four women with HIV may stop having sex after their diagnosis but that
doesn’t mean they will never love and experience sexual intimacy again,
consultant psychologist Dr Jenny Petrak tells Amanda Elliot
In Wim Wenders’ 1987 art house film Wings of Desire, two celestial angels,
cut off from love and sensation, hover over a divided Berlin dispensing comfort
to the lonely while yearning desperately for the experience of being human.
Though intended as comment on human alienation in a politically divided city,
the metaphor could equally apply to the many who assume a love and a sex life
is forever out of reach now they find out they are HIV positive.
Dr Jenny Petrak, head of clinical psychology, HIV and sexual health services
at Bart’s and the London Hospital, works with women, men and couples
whose sexual and emotional confidence has been shaken by an HIV diagnosis.
Petrak feels strongly that loss of sexual desire and enjoyment of sex in people
with HIV - and women in particular - is largely overlooked on the front line
of HIV care. Part of the reason, she says, is that busy HIV clinics are often
too tied up with bio-medical concerns to address people’s psycho-sexual
problems. And when sex does get mentioned during a consultation, it is too
often dealt with in the context of prevention.
“For men and women with HIV the issue of sexual relationships is a thorny
one. Prevention is the predominant message. ‘If you have sex use a condom
or abstain’. Sexual health should also include having healthy sexual
relationships and this is not being addressed.”
This is true also on the global HIV stage. At the Bangkok International Aids
Conference in 2004, HIV activist Shaun Mellor chided conference organisers
for failing to celebrate positive sexuality, diverse sexuality and sexual
rights. He urged them to: “put the sex back into the epidemic, beyond
just a route of transmission”. An online search of the many thousands
of abstracts presented at Bangkok proves his point.
Yet the problem of loss of desire among a significant proportion of people
living with HIV is a real one. Recent research conducted by Petrak and Bart’s
and the Royal London HIV clinics found that more than 40 per cent of women
with HIV had greatly reduced enjoyment of sex. And more than a quarter said
they hadn’t resumed sexual relationships after diagnosis.
An earlier study of HIV positive gay men published by the team in 2004 produced
similar results with 41 per cent per reporting loss of interest in sex and
up to 51 per cent experiencing erectile dysfunction.
Petrak said various studies had established an association between HIV and
loss of sexual enjoyment. A European study of 900 people living with HIV (20
per cent of them women) found an association with the length of time on antiretrovirals
- but this could not be pinned down to any particular drug or class of drugs.
The main predictors were age, depression and taking anti-depressants.
This study found rates of sexual dissatisfaction as high in women as in men.
But while HIV positive men experiencing sexual dysfunction (failing to get
an erection) can access a range of treatments (see PN 107) including the anti-impotence
pill Viagra (sidenafil) there are few such options for women.
Dr Pepe Catalan, consultant psychiatrist at the Chelsea and Westminster has
often said he sees few women, possibly because they are too shy, or too traumatised,
and probably because there is no equivalent to Viagra for women. In 2000,
researchers at Pfizer concluded that their drug Viagra did not work in women
experiencing lack of arousal - mainly because women’s sexual problems
were ‘too complex’.
In the US, Proctor and Gamble has developed a testosterone skin patch to stimulate
sexual arousal in women who have undergone an early menopause following a
hysterectomy. But experts advising the US Food and Drug Administration have
recommended the regulators decline an application to market the patch, even
though they accept it may well be able treat dysfunction in these women.
But Dr Petrak is sceptical of instant bio-medical solutions for women (and
men!) and the continuing reliance by the medical community on ‘out-dated’
models of female sexual dysfunction, such as failure to achieve orgasm during
penetrative sex. “Ask any woman about that one,” jokes Petrak.
“The sexuality of HIV positive women is often last in the list of priorities.
Their problems are not being picked up on the front line. That is why we are
doing these studies.”
Fear of infecting partners; association of sex with illness and fear of becoming
pregnant were among the many reasons women gave for their low sexual desire
and sexual enjoyment. “There are also natural adaptive factors that
may make some women experience a loss of desire, like after pregnancy and
the early years of child rearing.”
Those not in relationships said they feared disclosure would lead to rejection
by partners and stigmatisation.
On the upside, most of the women in the study reported being in established
relationships. More than a third had ended up in different partnerships after
their diagnosis citing non-HIV related issues as the reason for the split.
And most wore condoms. They also said the HIV status of their partners was
less important than “finding the right person”.
“The message is not all bad. A majority of these women will resume a
sexual life. But a significant proportion come to feel it is just not worth
it; that it will be too hard to find the right partner.
“Some women are absolutely firm in their belief that their sex life
is over. But I always suggest to them there is no need to make a decision;
set it aside, and keep a few doors open.”
During her consultations, Petrak says she aims to ‘broaden the context’
of sexual ‘problems’ and create an atmosphere where women and
men can talk openly about sex. She is an advocate of “sex-positive prevention”
within the context of a healthy sex life that promotes self-esteem. She also
suggests self-help techniques to women including a visit to Ssh, the women-only
sex shop in East London that sells vibrators, women’s sex toys and erotic
literature.
“The staff there are very helpful. It can be very liberating to visit.
It is about women giving themselves permission to enjoy sex. I’m not
advocating a return to 70s style sexual liberation but I am advocating choice,”
she adds.
