Where can you turn for help when illness wrecks sexual intimacy?

Where can you turn for help when illness wrecks sexual intimacy with your partner? It’s the side-effect even medics don’t want to talk about – and it happens to so many people… but is there an answer?

For Isabella Holmes, losing her ‘beautiful, long, dark hair’ was one of the hardest things to bear about cancer treatment.

‘My husband Mark and I met at school and my hair was the thing he loved about me,’ she says.

‘My identity as a woman and my sexuality was all tied up with my long hair and my red lips — that was who I was. When I told him I was planning to shave my head rather than wait for my hair to fall out during chemotherapy, I could see tears welling up in his eyes.’

In 2017, Isabella, 51, a clerical and social care assistant from Renfrewshire, discovered a ‘pea-sized’ lump in her left breast.

A mammogram and ultrasound were clear. Still worried, six months later she asked for a biopsy which her consultant agreed to. The lump turned out to be cancer.

For Isabella Holmes, losing her ‘beautiful, long, dark hair’ was one of the hardest things to bear about cancer treatment. ‘My husband Mark and I met at school and my hair was the thing he loved about me,’ she says

She had surgery to remove the lump — plus six sessions of chemotherapy and 19 of radiotherapy — followed by surgery to have her ovaries removed to stop oestrogen production and reduce the risk of cancer returning.

She then began the hormone therapy drug exemestane, which interferes with the body’s ability to make oestrogen. As soon as treatment started, and without warning, her libido fell off a cliff.

‘Overnight I was freight-trained into the menopause,’ she says. ‘I was a 47-year-old woman and I’d wake up every day in the body of an 80-year-old. I was in agony with my bones, which ached all the time. I had neuropathy — tingling and numbness in my hands — a side-effect of chemotherapy. I felt bashed and broken. I thought: is this what I’m fighting cancer for?’

While she says Mark was understandably ‘devastated and angry’ that her tumour wasn’t picked up earlier, the only time Isabella cried was during treatment, when she looked at herself in the mirror in a wig shop.

‘It felt as if my femininity was disappearing before my eyes,’ she says. ‘And I could see that I was disappearing before Mark’s eyes, too. Physically, emotionally, sexually, I wasn’t the same.’

Even when run ragged with work and home life — they have three children aged 25, 18 and 16 — Isabella and Mark, who works for air traffic control, had always had a good sex life.

‘We enjoyed sex and always found time for it, and my hair was part of that,’ she says. ‘I just couldn’t imagine myself having sex with no hair, and Mark looking at this bald head.

‘We got around it by having sex in the dark and I imagined in my mind that I still had hair and I was still sexy, even when I wasn’t feeling it. It was important to both of us that we carried on having sex because during those few moments of intimacy with your partner, you can escape the minefield of worry and emotion that cancer brings.’

Isabella understood there might be sexual problems during cancer treatment — she heard from other women about disappearing libido and vaginal dryness caused by lack of oestrogen — but had no discussions with breast cancer nurses about it and wasn’t prepared for how fast the changes hit her.

‘As soon as treatment started, all my sexual feelings were gone,’ she says. ‘That nice feeling you get when you look at your husband. I didn’t have it.

‘Mark and I talked about it and I asked him to keep on initiating sex because I didn’t want to lose that part of our life. I enjoyed it once we got going but I was not ever going to come on to him because the feelings weren’t there any more.’

She was given a folder of information leaflets, one of which included a section on intimacy that wasn’t helpful. ‘Mark and I are lucky as we’ve always found it easy to talk about these things, but it wasn’t on anyone else’s radar,’ she says.

‘I know other women who have been through cancer treatment never had sex again.

‘I think on some level I was giving cancer two fingers. I thought: you’re taking everything from me — but you’re not having this.’

Isabella’s story is far from unique. It seems for those living with chronic disease, post-treatment sex remains something of a taboo subject. Any kind of serious illness ‘has the potential to change who you are as a sexual person’, says Caroline Lovett, senior psychosexual therapist at The Royal Marsden Hospital in London — a rare role in NHS hospitals, and in her case funded by The Royal Marsden Cancer Charity.

‘While clinicians are fantastic at treating disease, where people are at sexually is the bit that gets forgotten.’

Lovett, whose patients range in age from young adult to 87, says: ‘They feel disconnected from the sexual side of themselves.

‘One of my patients said, “When I have these sessions, it reminds me I’m alive . . .” Sex is like a life force but we need to reconnect with it after illness and find different ways of approaching it.’

Sexual activity is not only about reconnecting relationships (releasing chemicals such as oxytocin that help strengthen relationships as well as increasing feelings of our self-worth), there are other, direct health benefits.

U.S. scientists have found that having sex once or twice a week produces 30 per cent higher levels of immunoglobulin A, which boosts your body’s immune system. An active sex life may even lower your risk of heart attack and stroke — a study of almost 1,000 men published in the BMJ in 1997 found that deaths from coronary heart disease were 50 per cent higher over ten years in the group who had infrequent orgasms.

While heart attack patients often worry that having sex could trigger another episode, research over a 22-year period published in The American Journal of Medicine in 2019 showed that heart attack survivors who had sex more than once a week were 27 per cent less likely to die prematurely compared with those who did not have sex at all.

Studies have also shown that women who remain sexually active before and after the menopause — which can be accelerated by cancer treatment, for instance — may not feel the side-effects of reduced oestrogen so acutely.

While research from Nottingham University, published in the British Journal of Urology International in 2009, found that sex more than ten times a month has a small, preventative effect against prostate cancer in men over 50.

And yet NHS England’s most recent cancer quality of life survey, a questionnaire sent to 66,000 cancer patients asked about self-care, mobility, pain, anxiety and depression after cancer treatment, but didn’t mention sexual dysfunction.

Dr Frances Goodhart, a consultant psychologist and author of The Cancer Survivor’s Companion, says: ‘Talking about sex and relationships is difficult for all of us — especially for people recovering from cancer, when pleasure has become of secondary importance to survival. But for doctors and nurses, too, there’s an awkwardness around enquiring about something that is so private.

‘There may be all kinds of preconceptions. If you’re over a certain age, clinicians may make the assumption that sex is no longer part of your life — and patients of all ages are often embarrassed to express their sexual needs.

‘Sometimes they’re unable to talk about it because they feel so unattractive, they don’t feel worthy of having sex, particularly if they’ve had treatment that affects their sexual organs.’

According to a survey by the cancer charity Macmillan, around six in ten men treated for prostate cancer up to five years previously are unable to have a full sex life as they are unable to get an erection, with a further 11 per cent reporting difficulties with having or maintaining an erection.

And half of men and a quarter of women who received radiotherapy to their pelvic area reported issues with maintaining a sexual relationship, with the effects persisting up to at least 11 years after treatment.

Mark Wells was diagnosed aged 17 with Crohn’s, an autoimmune disease which causes inflammation of the digestive system and affects one in every 650 people in the UK. Every year around 17,100 will need stoma surgery

‘When people are unwell, whether it’s a chronic condition or undergoing surgery, they often feel disconnected from their bodies as a source of pleasure because they’ve become a problem — they’ve let them down and need to be fixed,’ adds Dr Catherine Hood, a specialist in sexual dysfunction at St Pancras Hospital, part of Camden and Islington NHS Trust.

‘Surgery can change the way bits of your body feel, sensations change, some parts are more sensitive, others hurt . . . Things that were pleasurable before may not be now. And it’s OK to feel sad about that.’

And also not to feel ‘bad’ about not having sex, suggests Lovett. She points out that in our sexualised society it can feel shameful not to be having sex.

‘But the truth is, the vast majority of people struggle sexually at some point in their lives.

‘For women who’ve had mastectomies, or had their wombs and ovaries removed and whose hormone levels are affected as a result — or men who can no longer get an erection owing to some cancer medication and treatment for conditions like prostate cancer — things are going to be different now.’

But ‘different’, she says, ‘doesn’t always mean worse’. When meeting a new patient, she’ll often say, ‘I want you to unlearn everything you’ve learned about what it is to be a sexual person and start with a clean sheet.’

‘It’s a gentle journey discussing all the things we’re frightened of,’ she says. ‘Human beings are innately programmed to have sex. It’s a key element to our wellbeing and happiness.

‘But people worry about pain, about their partners not fancying them because their bodies have changed, and things not working. It’s important to remember that sex happens in the brain. Tickling the back of the ears sends a lovely message all the way through the nervous system into a big bundle of nerves in our brain and we’ll get a beautiful hit of dopamine.’

‘It’s all about communication,’ says Frances Goodhart. ‘The opportunity for miscommunication between partners is rife. Your partner may be afraid of expressing their own needs when you have been through so much. You may misinterpret that as “You don’t find me attractive”.

‘It’s a minefield and the only way out is to talk openly about what has happened and re-build intimacy slowly, beginning with something as simple as holding hands.’

A study by Macmillan in 2013 found that talking to a potential new partner about a long-term illness can be even harder. If you have scars or other visible changes to your body, Dr Goodhart suggests a prepared script so you are not suddenly put on the spot.

Mark Wells, 35, from Nottingham, who works in financial analytics, marked surgery to remove his colon with a tattoo of a phoenix on his chest ‘to provide a talking point on dates’, so that he’s then able to bring the conversation round to the colostomy bag just below his navel.

Mark was diagnosed aged 17 with Crohn’s, an autoimmune disease which causes inflammation of the digestive system and affects one in every 650 people in the UK. Every year around 17,100 will need stoma surgery. For years, Mark had frequent bouts of pain and diarrhoea and would often pass blood. ‘It was always a secret,’ he says. ‘It’s a really embarrassing illness.’

He was prescribed immunosuppressants and steroids — but nothing worked for more than a few months.

In 2009, when he was just 22, he had a proctocolectomy, where the colon is removed and the small intestine diverted through a small hole or stoma in the abdomen. Waste is then collected in a bag, which needs to be emptied several times a day. ‘I was so embarrassed and ashamed of it,’ he says. ‘I didn’t even want my family to see it.’

Breaking up with his long-term girlfriend in 2016 was extraordinarily tough. ‘I depended on her a lot for emotional support,’ he says. ‘And she was the only person who’d seen me naked with my stoma.

‘Suddenly being single, I felt I needed to improve my body to compensate for this “ugly” thing, so I started going to the gym. I got a tattoo as a way of sparking conversation about my surgery, and began to figure out how to get back into dating.’

The first girl he slept with post-surgery was a nurse. ‘I was incredibly anxious she wouldn’t find me attractive — that was all going on in my mind. My confidence was so low.

‘The next girl was really lovely. She said: “I like a good back-story”, which helped because I was very pessimistic about anyone fancying me again.

‘I went through a phase of smashing through the fears —travelling on my own and doing some modelling — which helped me feel empowered and freed from the shackles of this disease. But I still feel I have to compensate aesthetically. I have to be extra fit and I have super-high standards and expectations of myself.’

Mark mentions the charity Purple Wings, which helps people with stomas regain confidence through funding treats and outings. ‘The first thing we talk about at annual fundraisers is sex,’ he laughs. ‘Just getting it all out in the open and being a bit lighter about it really helps.’

On average, patients at the Royal Marsden have ten sessions with Caroline Lovett, but availability of NHS sex therapists varies across the country. All are registered with CORST (the College of Sexual and Relationship Therapists) and your GP should be able to advise on what provision there is in your area.

The Royal Marsden’s programme of psychological and emotional support is funded by The Royal Marsden Cancer Charity. To donate, visit royalmarsden.org/donate and crohnsandcolitis.org.uk.

Under the microscope

Comedian Barry Humphries, 88, answers our health quiz

Can you run up the stairs?

I can, although I have to sit down for a while afterwards. But I’m no fan of exercise and yet, over the New Year and in anticipation of my one-man tour, I did gently get myself in trim by walking every day. In truth, it was only for about half a mile.

Ever dieted?

Three years ago, I was paid by Jenny Craig to go on a weight-loss programme, which meant cutting out all carbs. I lost 15 kg (2 st 5 lb), although five of those have since crept back on. I feel much better for being lighter.

How have you coped in the pandemic?

I’ve been fine but then I’m blessed with a cheerful disposition. As a boy, my parents used to call me Sunny Sam. I do get a bit despondent, though, if a review isn’t quite glowing enough.

Pop any pills?

I take something to counteract my slightly elevated blood pressure, and fish oil tablets because I was told they were good for the brain.

Any vices?

My wife, Lizzie, is a superb cook, producing meals the like of which you couldn’t get in the best West End restaurants. One way and another, she makes sure I get my five a day. And I love fudge.

Any family ailments?

My father had a bad heart and died playing golf aged 68. My younger sister, Barbara, has angina and one of my brothers, Christopher, has a pacemaker.

But I’m OK. I’m punctilious about having regular medical checks. I recently had a colonoscopy. They showed me on a screen what was going on in there. It looked like a visit to the caves, although, happily, there were no tourists.

Had anything removed?

About 12 years ago, in Melbourne to see my daughters, I was doubled over with stomach pains. They gave me a wheelchair at the airport and put me in a lift, which then got stuck for several hours.

Finally, they repaired it and I caught the last plane home to Sydney, still in agony. At the hospital they said my appendix had burst some time earlier and it had to be removed: I was told subsequently I’d been within 20 minutes of dying.

Any other ailments?

I was recently diagnosed with Extramammary Paget’s disease, a chronic eczema and a form of skin cancer on my left testicle. My doctor said, memorably: ‘The scrotum is very forgiving.’ He cut away the affected skin, which didn’t hurt at all, although the ointment I had to use afterwards burnt a lot.

What keeps you awake?

Anxiety. I always have anxious moments before performing, although I’m fine once I’m on stage.

Like to live forever?

I intend to.

Tour details: manbehindthemask.co.uk.

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