Whenever Sue Jacobs, a 56-year-old hairdresser from Chiswick, met with friends for coffee or a meal, it would always be punctuated by her constant need to rush to the toilet. This she describes as ‘something I simply put up with for many years’, explaining that:
“after I had a drink, I’d need to go three or four times within an hour. I’m not the sort of person who gets embarrassed easily and I wasn’t going to stop going out and doing the things I enjoyed. But it does have an impact on your life.”
For a long time, Sue didn’t recognise that she was dealing with an incontinence problem, instead believing that she simply needed to go far more often than other people. Dr Shirin Irani, consultant gynecologist at Heartlands Hospital in Birmingham believes this is a common attitude among women living with incontinence – an attitude largely born out of an unwillingness to acknowledge and accept they may have incontinence issues, explaining that:
“There is an embarrassment which can stop women seeking help and also a sense it’s part of a woman’s lot.”
In her late 40s, the problem became more pressing and was only once she’d turned 50 that she finally saw her GP, who prescribed drugs to block the signals which tell bladder muscles to contract. She recalls:
“These didn’t help and I wasn’t offered any other treatment. You feel it’s something you have to live with.”
Usually bladder retraining exercises, combined with medication – that block the nerve impulses telling the bladder to contract – is enough to alleviate cases of incontinence for the majority of female sufferers. But some, like Sue, need further intervention. When she returned to her GP, she was referred to consultant urologist Jeremy Ockrim at University College Hospital, who is a practitioner of a new treatment called Sacral Neuromodulation and Botox injections for incontinence.
The Botox treatment involves the chemical being injected into the sides of the bladder to relax muscles, thus stopping contractions. ‘It has been helpful for many patients, but it isn’t perfect,’ says Mr Ockrim, who explains that:
“Patients need repeat injections every six to nine months and symptoms may return gradually. There is also a 20 per cent risk of paralysing the bladder muscles, which means the patient will need a catheter to pass urine.”
With the Sacral Neuromodulation treatment, a thin wire with a small needle on is implanted in the sacral nerves. An electrical current is then delivered through it, which enables the brain to inhibit unwanted signals from the bladder. This technique effectively suppresses the sudden contractions and the need to rush to the toilet. Patients trial a modulator for three weeks and can choose to have a permanent implant if it works – which is exactly what Sue decided, having noticed dramatic changes soon after the procedure:
“The effect was immediate… two hours after it was switched on, I hadn’t gone to the toilet once.”
She returned to hospital to have a permanent modulator – the size of a £2 coin – implanted under the tissue and skin of her lower back. While Sacral Neuromodulation has been approved by NICE since 2004, only 100 or so women have benefitted from the treatment in the UK – a major factor most likely being the cost.
The stimulator itself costs £8,500 and overall treatment is £12,000. Mr Ockrim, who has treated nearly 60 patients with sacral neuromodulation believes:
“It’s a large initial expense, but comparable with a lifetime of Botox injections…We should consider the social and personal cost for women with incontinence. They go out less, take time off work or even stop working.”