Research is now showing that people living with HIV experience double the amount of sexual dysfunction than the rest of the population.
Patrick James investigates...
If you can't get up, get down and if you can't get down, get out," was the amusing but harsh judgement by the famous 1980s model Lauren Heston.
 illustration by jordan travaglia |
Most men can joke about sexual performance, as long as the joke is not at their own expense, but much of the humour is a way of disguising real fears about the possibility of sexual dysfunction. And many people have serious difficulty talking about real or potential sexual problems, let alone seeking practical advice or help.
But a number of recent studies into the lives of people living with HIV have shown that both men and women living with the virus are experiencing levels of sexual dysfunction much higher than among the general population.
The problems range from erectile difficulties in men, to lubrication problems in women as well as issues with desire, arousal, orgasms and overall sexual satisfaction in both sexes. Many of the causes of these problems are well known, such as increasing age, stress, anxiety, depression, and excessive use of alcohol, cigarettes or other recreational drugs.
People have reported problems with impotence and loss of libido which may be the result of the effects of the HIV virus itself, the side-effects of treatments and the psychological problems of coping with an incurable disease.
Since the discovery of HAART (Highly Active Antiretroviral Therapy) in the mid-1990s, a decrease in mortality and return to health for most people with HIV has not, in fact, led to an improvement in sexual desire, let alone performance, despite people thinking more about having 'it'.
A report in the journal Aids in 1999 (Vol 13) estimated that the prevalence of sexual dysfunction in HIV positive men was around 33 per cent, which is double that of the general population.
Another study of 1,000 European adults living with HIV in 2000 found that 48 per cent of the men and women taking the protease inhibitor class of medications reported a drop in sexual interest. But the highest percentage of HIV positive people who reported some form of sexual dysfunction, a massive 70 per cent, was published in a French study last summer.
It's the personal stories from HIV positive people themselves which explain much more of the anguish of sexual problems that statistics and surveys can ever do.
Matt, a 48-year-old Londoner who has been living with the virus for the last 15 years, told me: "I'm HIV positive and my lover is negative. We hardly have sex at all these days and I've resorted to using Viagra to help because the HIV drugs and worries about infecting my boyfriend seem to have combined to wreck my libido."
David, in his early 50s, explained: "Over the last 10 years the lack of sex has depressed me more than living with HIV. It's completely wrecked my attempts to keep a steady relationship and I find myself even more lonely and isolated."
And 36-year-old Alan who is HIV negative but has a partner who has HIV, explained: "Since my lover's HIV diagnosis, sex has become a lot more difficult. HIV has opened a whole can of worms in our relationship."
Adrian, who is in his mid-40s, explained that depression was leading him to almost give up on sex and it was making him feel even more down:
"Some famous writer described getting older and being released from having a big sex drive as 'Being unchained from the wild horses' but my quality of life has gone through the floor. I know the HIV drugs are keeping me alive but what's the point when I'm grumpy and miserable all the time?"
Research has also shown that women who have HIV also experience severe problems with sex. A study among 82 HIV positive women this spring by a team at London's Bart's Hospital found that 28 per cent had no sexual partners since diagnosis, 84 per cent said they only had sex infrequently and actually avoided sex and 60 per cent said they had experienced sexual dysfunction.
Many women living long-term with HIV experience early menopause as a result of abnormal production of the female hormones progesterone and oestrogen. Sexual dysfunction among women also manifests itself in symptoms such as vaginal dryness, thrush or severe pre-menstrual syndrome (PMS).
Maureen, who has been living with HIV for 10 years and is now separated from her husband, says she has almost given up on sex:
"It's almost impossible trying to find a partner who accepts me as a sexual being. I've tried the internet, dating agencies and small ads without success. I seem to be destined just to live on my memories."
But help for positive people who are experiencing difficulties with sex and relationships is now available through many HIV clinics around the country.
Dr Jose Catalan heads the Psychological Medicine Unit of Europe's biggest HIV clinic at the Chelsea and Westminster Hospital and each year his team helps hundreds of HIV positive patients.
He describes how the psychological units attached to HIV clinics are now seeing large numbers of HIV positive men who are experiencing erection problems. Many of these are caused by the side effects of anti-HIV medications such as circulation problems and neuropathy, but others are a result of much deeper psychological reasons.
Dr Catalan does prescribe Viagra to patients with HIV who are suffering erectile problems, but this is combined with behaviour therapy sessions and advice about safer sex responsibilities.
And one patient at the clinic explained that having Viagra at home has helped:
"Just having Viagra in the cupboard in case I need it has helped me relax with sex again."
There are, however, some important pointers for people who take Viagra, with vital implications for health.
Those taking the protease inhibitor class of anti-HIV drugs, are advised to take a low dose of Viagra as the antiretrovirals reduce the metabolism of Viagra in the liver and can lead to dangers of low blood pressure, passing out or even worse. Viagra's manufacturers, Pfizer, advise that ritonavir and Viagra should never be taken together.
Another serious warning should go to people who take poppers (amyl or butyl nitrite) during sex after taking Viagra. There have been cases of people passing out with very low blood pressure and there have also been reported cases of deaths. Indeed, one infamous and sleazy South London sex club regularly has ambulances parked outside after busy Saturday afternoon sessions.
Another warning should go to people who are prescribed testosterone replacement therapy. This can work well at boosting libido and sexual confidence in the short term, but in the longer term, is actually counter-productive as it stops the body's natural production of the hormone as well as creating possible mood swings, unnatural hair growth and even shrinking testicles.
Other possible solutions are to review your medications, as many of the drugs we take for high blood pressure, depression, high cholesterol and high triglycerides can make sexual performance even worse.
An improved diet with less animal fat and more fresh fruit, vegetables and seafood helps, and regular exercise not only makes you feel and look better, but also gives you much more energy and potency in the sack.
Herbal remedies which give an energy boost and improve blood circulation include ginkgo and ginseng and 'natural' Viagras such as Yohimbine (see 'The natural viagras' in Pamper Yourself of Positive Nation, November 2002).
But the bottom line for anyone suffering from sexual problems as a result of living with HIV is that help is available. Don't be afraid to ask for it. And you certainly don't have to accept the curse of the droop and the depression and despair that it can create.
Some names in this article have been changed for reasons of confidentiality.
