For millions of Britons it is a secret they dare not discuss. A problem they put up with, silently, often for decades.
Incontinence will affect 40 per cent of women, and one in ten men at some point in their lives.
And it’s not simply an embarrassing inconvenience: it can leave sufferers near-housebound for fear of having ‘an accident’.
Others are forced to shell out hundreds of pounds on special pads and underwear to get through their lives.
Sheila Cakebread, 73, from Godalming, Surrey discovered several of her friends were being treated with Botox for years for their incontinence, to great effect
Elizabeth Silver, 66, from Tonbridge, Kent, who is doubly incontinent, has been told by doctors in Tonbridge, Kent, that there is nothing more they can do – though her sister has had good results being treated by Botox
It’s not surprising many of those blighted by the problem report high levels of distress, anxiety and depression. Worse still, it seems that when many pluck up the courage to seek medical help, little is forthcoming.
Last week, The Mail on Sunday published details of a damning report that highlighted the failure of NHS services across the country to treat patients with urinary incontinence.
Some wait up to ten years just to get a diagnosis, the report from the Pelvic Floor Society found, while cutting-edge therapies – such as Botox and electrical stimulation devices that target the nerves in the bladder and bowel – are offered to just a tiny fraction of patients.
We asked our readers to let us know if they, too, had struggled to get treatment – and we were inundated with responses.
Many of the stories were heart-breaking, describing years of managing the problem at home, feeling too ashamed to ask for help.
One 83-year-old wrote: ‘I really thought no one else suffered like me and was convinced nothing could be done. I’m too embarrassed to say I’ve lost control “down there”.’
She, along with many others, admitted they rarely leave the house, and have their lives on hold because of their condition.
Others, having summoned the courage to finally contact a GP, or get a referral to a specialist, felt they had been dismissed. Many were told simply to soldier on, that there was nothing that could be done. Women were told, starkly: ‘Well, you had children. What do you expect?’
Most were told to do exercises, known as kegels, to no avail.
Many women suffering from urinary incontinence are told there is nothing that can be done
Kegels involve clenching and relaxing the pelvic-floor muscles, which cradle the bladder and are integral to our ability to ‘hold on’. To have any effect, ten minutes of kegels must be done three times a day, for up to six months, and then continued once a day for life. Studies show most people, unsurprisingly, simply give up.
And kegels will not work in every case. They can help with stress incontinence, where the pelvic-floor muscles are weakened or damaged from injury of childbirth.
In those with another form, urge incontinence, they can also have some effect. In these patients, the nerves of the bladder are overactive, causing an uncontrollable need to urinate.
But some people have an over-active pelvic floor, where the muscles are already too tight, and over-exercising them with kegels could make problems worse. It causes muscle fatigue and weakness, which leads to more accidents.
Many incontinence sufferers are afraid to leave the house out of fear of suffering an accident
There are drugs that can help with all types, but these may have serious downsides. Some, called anticholinergics, stop the bladder contracting but can cause forgetfulness and drowsiness. Another class of drug, known as beta-3 sympathomimetics, makes the bladder relax but can cause dizziness and nausea.
‘I was prescribed a medication that gave me acute indigestion,’ wrote one 71-year-old reader, who asked to remain anonymous. ‘I went back to the doctor, who said “Oh, sorry to hear that”, and that was it. No alternatives offered. No advice given. I can’t even walk upstairs without having an accident.’
Few patients were offered other treatments, although there are numerous options.
Obstetrician and gynaecologist Dr Clive Spence-Jones, a pelvic-floor specialist, said the current approach was inadequate.
‘Telling people to just do their kegels and to put up with it isn’t acceptable,’ he said. ‘And to tell them there’s nothing more that can be done is awful.
‘We know lots of people have been struggling for years through embarrassment before they’ll see a doctor, and being dismissed or badly advised will knock them back psychologically and physically.
‘But there are also other things for patients to try, which should be offered, depending on the type of incontinence they have.’
In one third of patients, standard drug treatments fail.
It’s vital, when at this point, that patients and their doctors keep trying to find a solution, Dr Spence-Jones said.
Botox injections for urge incontinence are highly successful, reducing incontinence in three-quarters of patients, with effects lasting up to a year before a top-up is needed.
Botox contains a medical form of a toxin that paralyses muscles, reducing the spasms that cause leaks. The procedure can be done under general or local anaesthetic and involves inserting a thin metal tube containing a camera into the urethra. Through the tube, doctors inject Botox into up to 15 sites around the bladder.
Other options include implanting sacral-nerve stimulators, which send electrical pulses to nerves in the tailbone, regulating the bladder or bowel muscles. But too few centres offer these treatments, and many general urologists and gynaecologists have no experience of them.
For Annemarie Mitchell, 77, the problem has continued for more than 40 years – and she is still waiting for a solution after several doctors advised her to ‘soldier on’ and keep performing her kegels.
One reader wrote: ‘It completely changes your life. The clinic is well run and the nurses feel more like a friend, so no embarrassment’
The retired flight attendant from Clevedon, Somerset, began suffering from leaks after the birth of her second child, and had taken to wearing sanitary pads designed for periods. ‘They largely dealt with the problem, but on flights the crew would joke that I was always the first into the toilet after take-off,’ she said. ‘I did my pelvic-floor exercises – I always have done – and they seemed to help.’
But in 2016, Annemarie began having embarrassing accidents, which soaked through her pads. ‘Suddenly, they weren’t enough. I couldn’t drink a coffee when I was out without desperately needing the toilet, I couldn’t have wine with a meal and had to start focusing on where the nearest loo was at all times. I can’t wear trousers with a zip or buttons, anything that doesn’t unfasten easily and quickly.
‘You’re aware when you lose control – but you can’t stop it. I try to stay positive, but I get very depressed about it.’
She spoke to three private consultants – one gynaecologist and two urologists. They recommended a physiotherapist at £60 a time, which Annemarie turned down after realising kegels hadn’t made a difference. Prescribed drugs also didn’t work.
Annemarie gets through a pack of 32 disposable incontinence pants costing £28 every month – which means the issue is costing her more than £330 a year in these alone.
Even then, she wraps them in eight layers of toilet paper for extra protection. After a friend said Botox injections had been ‘her salvation’, Annemarie asked to be referred to an NHS incontinence clinic at Southmead Hospital in Bristol, where she had an appointment last month.
The nurses were helpful and positive, she said, and she is now waiting to find out whether a doctor will recommend Botox or sacral-nerve stimulators.
Bristol is one of a few centres, along with Southampton, Liverpool and parts of Berkshire, where readers say Botox is being offered.
Some incontinence patients have reported great improvements having being injected with Botox once every six months
One said it had given her a new lease of life. ‘I suffered for many years, being referred to physiotherapy after taking prescribed medication for approximately seven years, which made my life unbearable at times,’ she wrote. ‘We should not be ashamed and suffer from this condition when it can be remedied by a simple operation.’
Another reader praised the clinic at Liverpool Women’s Hospital, where she has a Botox injection every six months.
‘It completely changes your life,’ she wrote. ‘The clinic is well run and the nurses feel more like a friend, so no embarrassment.’
But others are facing a very different scenario. Margaret Doherty, 74, from Manchester, has been waiting months for a urology appointment after her bladder weakness worsened following a hysterectomy for uterine cancer.
‘I’ve got no idea when I’m likely to see a specialist,’ she wrote.
‘I have no feeling in my stomach area inside or outside, therefore pelvic-floor muscle exercises are pointless. I’d be more than willing to travel to Bristol.’
Elizabeth Silver, who is doubly incontinent, has been told by doctors in Tonbridge, Kent, that there is nothing more they can do.
The 64-year-old retired nurse, who had four large babies in quick succession in her 20s, was referred to a continence nurse and advised to carry out kegels after the problem worsened three years ago.
‘They didn’t do any good. I became anxious and depressed,’ she said. ‘I love walking but I can’t go anywhere if there’s no toilet.
‘I was once caught out wearing a pair of shorts and that was just the most awful, embarrassing thing. I end up just not going out.
‘I had a follow-up appointment two weeks ago and told the doctor the kegels weren’t doing anything.
‘They just said the exercises were to stop it getting worse, that I had slack muscles and there was nothing to be done – I just had to put up with it.
‘He said my condition was minor, but it doesn’t feel minor to me – it affects every part of my life.’
Her sister, who lives near Southampton, was given Botox for urge incontinence and found it ‘really helpful’, and Elizabeth now plans to ask her doctors to consider her for it. ‘In my career, I was taught not to question the doctors, so I haven’t questioned this – but I know I must,’ she said.
It’s a similar situation for Sheila Cakebread, 73, from Godalming, Surrey. Several friends in neighbouring Berkshire have been given Botox for years for their incontinence, to great effect.
‘It’s sorted their problem,’ she said. ‘My GP has been fantastic and written lots of letters, but she did say most patients suffering from this don’t get any sort of resolution.
‘That’s shocking. I’ve been passed from urology to gynaecology and back full circle since my issue began two years ago, and the consultants just don’t seem to be taking it seriously. It feels like they’re so indifferent, and don’t quite consider the psychological impact this has.
‘I’m not a little old lady in a rocking chair. I have an active social life. But it means always being well equipped, wearing pads and wondering if you’re going to wet yourself. What woman wants that?’
Part of the problem, Sheila said, is that because so few women discuss the issue, any failures by the service also go under the radar. ‘If we don’t talk about this, the situation will only continue,’ she said. ‘If it was a problem for men, something would be done. But this is largely a female problem.’
Another 64-year-old reader, who asked to remain anonymous, said she had given up after suffering from incontinence since the 1980s. ‘The lifestyle changes did not work, and the prescribed medication failed. At my last hospital appointment, in 2017, the consultant didn’t even look at my bladder diary and just referred me back to the GP for a further prescription – case closed.
‘My life is forever on hold, a handbag full of extra-plus pads and spare knickers. I can’t wear trousers or go on long walks. I can’t even walk two miles to buy a paper without an accident. It makes my life a misery.’
Dr Spence-Jones said part of the problem facing patients was that pelvic-floor services were not yet fully co-ordinated.
‘Services for cancer patients are streamlined to make sure that you wouldn’t have a general gynaecologist treating patients with gynaecological cancer. In the same way, we should not have general gynaecologists or urologists treating patients with pelvic-floor problems,’ he said. ‘We need more specialist centres.’
But experts have also urged women to come forward sooner.
Elaine Miller said it can take up to seven years for women to visit a clinic. ‘One in three women wet themselves, according to statistics, but the reality is it’s much more common than that because people don’t admit to it,’ she adds.
‘Even when women do engage in treatment, there’s evidence that they minimise the problem and the impact on their lives.’
During one clinic last week involving 25 patients, GP Dr Philippa Kaye said four had been women with incontinence problems. ‘It’s never normal to wet yourself, unless you’re a baby,’ she said. ‘Do not accept this as just part of the ageing process.
‘Botox isn’t a first-line treatment – you have to start with other things first. Alongside drugs, there are pessaries, and vaginal devices which can stop leaking can also be used. But to be told there’s nothing for women, if kegels don’t work, is shocking. We’ve got treatments for all of it.’