Why you must discuss sex with your doctor
Illness can affect your love life but patients (and doctors) are often too shy to mention it
SEX IS far from the taboo subject it once was — except for people living with a serious illness. Their sexuality is often ignored, with few healthcare professionals willing or able to discuss how an illness or treatment might affect their sex life and relationship.
Indeed, doctors in most specialties, from orthopaedics to oncology and even gynaecology, very rarely approach the subject directly with patients, according to a major review of studies entitled Why Don’t Healthcare Professionals Talk About Sex?
The reasons included ‘fear of opening up a can of worms’ to worries about causing offence.
Only 6 per cent of GPs initiated discussions about patients’ sex lives because they didn’t want to appear nosy. Some admitted the subject made them feel uncomfortable.
‘If you have a life-threatening disease, the focus is on treatment to keep you alive,’ explains Jo Coker, from the College of Sexual and Relationship Therapists.
‘Yet you might have all kinds of anxieties about whether your partner still finds you attractive and if your libido will return.’
Furthermore, a healthy sex life has wider implications. Ms Coker says: ‘We know that if people are happy and supported in their relationship, and that includes having some kind of physical intimacy, their physical health is likely to improve as well.’
The failure of healthcare professionals to talk about sex places the onus on the patient — yet most people find it very difficult to discuss worries about sex during routine medical appointments, Ms Coker adds.
‘They worry that the doctor might disapprove, or they feel de-sexed by illness and somehow not entitled to a sex life.
‘Women whose partners experience erectile dysfunction after surgery for prostate cancer rarely complain about their sex lives. They may feel there’s something slightly distasteful about admitting to wanting sex.’
THE failure to consider the effect of treatment on patients’ sex lives is illustrated by the experiences of Alex Cowan. She was diagnosed with the degenerative neurological disease MS when she was 25.
By the time she was 39 she was unable to stand or walk. When she developed incontinence, her consultant suggested having a catheter implanted from her bladder to an external bag which could then be emptied.
‘The outcome of the procedure was totally liberating because I knew I wouldn’t have to worry,’ says Alex, now 51, from London.
But there was also a downside: the surgeon had placed the catheter tube low over the pubic bone — he had assumed Alex would want it below her bikini line — and it made her feel self-conscious and uncomfortable about her sex life.
‘I was a young married woman of 39, yet at no point did anyone discuss with me how the catheter would impact on my sex life or my body image,’ she says.
It was four years before Alex found the courage to broach the subject with her surgeon: ‘Partly out of embarrassment, partly because I knew it would involve more surgery to have it moved higher up.
‘I finally said: “Funnily enough, I prefer sex to sunbathing.” And the surgeon apologised and re-sited it.
‘That was a very big deal for me because it took months to get over the first op and I dreaded feeling so exhausted and ill again.’
Prompted by her experiences, Alex wrote a book, The Sexual Respect Toolkit, with psychologist Susan Quilliam, to help GPs and other health professionals bring up the issues of sex and sexuality with patients.
‘People with disabling diseases aren’t considered by the medical profession as viable, covetable sexual partners and that has the devastating effect of making you feel sexually undesirable when you’re at your most vulnerable,’ says Alex. ‘ Your sexuality is an intrinsic part of being a human being, and when it’s ignored you feel somehow less human.’
Sex and illness may be a taboo subject but it is one that affects countless lives.
The cancer charity Macmillan’s report Cured But At What Cost?, published in 2013, found that while about half of those people diagnosed with cancer today will live for 10 years after diagnosis, a quarter (some 500,000 people) live with distressing problems such as urinary or bowel incontinence, crippling fatigue and sexual difficulties for years after their treatment has finished.
‘The sense of your body as a private, sensual, intact and functioning object is damaged by being investigated and treated by strangers,’ says Dr Frances Goodhart, author of The Cancer Survivor’s Companion.
‘Regaining yourself as a sexual being can be very challenging.’
Changes in weight and muscle tone and function (such as erectile dysfunction in men), and scars, can all affect the physical act, but also have a huge impact on the patient’s perception of themselves as a desirable sexual partner.
‘Chronic illness also changes how you see each other,’ adds Dr Goodhart. ‘The partner who has to help you on the loo may not easily change roles back into a loving sexual partner. Awkwardness about talking then leads to avoidance and a downward spiral.’
Alex Cowan describes a recent period of depression when she realised how much her body shape was changing.
‘My body is different to how it was when I took movement for granted and I had this crisis over whether I was still attractive.’
So what helped? ‘I had to look at my sex life in a totally different way,’ she says.
‘Spontaneity before I had MS might have been three minutes. It’s now more like three days.’ She adds: ‘It’s really important to move on and find different ways of feeling satisfied.’
Alex feels communication with her husband is probably the key part of their sex life now. ‘It has been hugely enriching,’ she says. ‘But there’s a lot of fear involved: you’re worried your partner will be disgusted by how you look.’
People in long-term relationships, where sex has become routine, can find it hardest of all to talk to their partner.
‘ During the acute phase of diagnosis and treatment, people often manage by suppressing their feelings, and for some there is a reluctance to go back to having sex because it involves extreme vulnerability,’ says Dr Catherine Hood, a psychosexual specialist based in London.
‘Picking your sex life up again with scars or disfigurements means you have to mourn the loss of your former carefree self, and that takes time.’
And, she adds, millions of people live with chronic conditions that are not life-threatening but nonetheless have an impact on their confidence and their sex life.
‘With conditions such as irritable bowel syndrome, people habitually avoid intimacy because they feel bloated and uncomfortable, or are terrified of breaking wind. The main thing is to lower distress by opening up communication and helping people adapt.’
Most therapists will suggest using sex aids, including special cushions and lubricants.
Samantha Evans, a former nurse, founded the website Jo Divine after realising that patients found it difficult to talk to healthcare professioanls. ‘Many find it easier to talk to us on the phone about their sexual problems,’ she says.
All experts agree that the most important thing is not to suffer in silence. ‘Please don’t struggle on alone,’ says Dr Goodhart. ‘A referral to a qualified psychosexual therapist can save relationships.’