Why are so many seriously ill women misdiagnosed with IBS GPs mix it with endometriosis, Crohn's and even cancer…



02:54 GMT, 20 March 2012

'I wasted six months fruitlessly treating IBS, when I had bowel cancer,' said Lisa Moss

'I wasted six months fruitlessly treating IBS, when I had bowel cancer,' said Lisa Moss

Like most people, Lisa Moss trusted her GP’s opinion implicitly.

Despite concerns about sudden tummy pain, diarrhoea and wind, she was relieved when she was told it was nothing more serious than the common gut problem, Irritable Bowel Syndrome (IBS).

‘I learned there is no cure for IBS nor do they really know the cause, but nevertheless I walked out of the surgery feeling reassured.

'At least it wasn’t cancer or anything sinister,’ says Lisa, 49.

was given medication for the diarrhoea, and advised to cut back on
fibre, exercise more and reduce possible triggers such as stress.’

the medication helped, the pains continued.

And Lisa, who was 47 at the
time, found blood in her stools and lost a stone in a few months,
despite eating well.

She went back to her GP twice and was told the bleeding was caused by piles, and the weight loss was due to the stress.

was told to persevere with the IBS treatments,’ says Lisa, a part-time
hair salon assistant who lives with her husband Nick, 55, and two sons
in Southampton.

It was
only when Lisa passed a blood clot, a couple of months later in June
2010, that she was sent for a colonoscopy, a procedure where the entire
bowel is examined via a tiny tube with a camera on the end.

‘They could insert the tube only 17cm into my intestine before they hit a tumour,’ says Lisa.

‘And from that point onwards, everything snowballed.’

A week later, doctors confirmed it was cancerous. Cancer was also found in two lymph nodes.

‘Three weeks later, the lower section of my bowel was removed and I had six months of chemotherapy, ending a year ago,’ says Lisa.

‘I’m having three-monthly check-ups but am not out of the woods yet.

'I wasted six months fruitlessly treating IBS, when I had bowel cancer. How did they miss it’

It is a shocking story but, unfortunately, not unique.

While there are no figures for how many have been misdiagnosed, a staggering 10 to 20 per cent of bowel cancer patients may be initially told their problem is IBS

While there are no figures for how many have been misdiagnosed, a staggering 10 to 20 per cent of bowel cancer patients may be initially told their problem is IBS

That’s because an IBS diagnosis can wrongly be given for a large range of conditions, including bowel and ovarian cancer, Crohn’s disease (a form of inflammatory bowel disease), endometriosis (where womb lining grows outside the womb) and even food allergies such as coeliac disease (an intolerance to the protein gluten).

Between 10 and 20 per cent of people experience IBS symptoms, and nine million Britons have been diagnosed, claims the charity IBS Network.

Twice as many women as men are affected.

While there are no figures for how many have been misdiagnosed, a staggering 10 to 20 per cent of bowel cancer patients may be initially told their problem is IBS, says Tariq Ismail, colorectal surgeon at University Hospital Birmingham and BMI Priory Hospital, Birmingham.

Another leading gastroenterologist, Anton Emmanuel at University College Hospital, London, says up to five per cent of the IBS cases he sees are misdiagnosed.

An IBS misdiagnosis is also common with endometriosis, with up to a fifth of patients affected, according to Ertan Saridogan, a trustee for the charity Endometriosis UK and consultant gynaecologist at University College Hospital.

‘IBS is a collection of symptoms rather than being a disease itself,’ says Peter Whorwell, professor of medicine and gastroenterology at the University of Manchester.

‘As a result, the symptoms — abdominal pain, a change in bowel habits, diarrhoea or constipation, bloating and wind — can occur in a host of other conditions.

‘This has led, in the past, to IBS being seen as a bit of a “dustbin” diagnosis, with doctors giving patients a name for their group of symptoms, but not really knowing what’s going on.

‘The effective treatment of IBS can also take time, and failure to respond could indicate the diagnosis is not correct and something else is being missed.

'If this happens with Crohn’s disease, for example, this is not necessarily a disaster — whereas, if cancer is overlooked, this could be a catastrophe.

‘Things are better since the National Institute for Health and Clinical Excellence (NICE) introduced guidelines in 2008 which help doctors to know which symptoms can be safely attributed to IBS.

'For instance, bloating in IBS varies and is worse in the evenings, whereas constant bloating can be a sign of ovarian cancer.

'The chances of more serious disease being overlooked are more unlikely now.’

But as Lisa’s story shows, people still fall through the net. Dr Steve Mowle, vice chairman of the Royal College of General Practitioners, says: ‘For doctors, the challenge is to differentiate between this common gut condition and something more serious.

‘GPs will typically see just one new case of bowel cancer a year. Along with “red flag” symptoms, probability is also important.

'Bowel cancer rarely affects anyone under 50. Knowledge of a family history is also vital in certain situations, particularly that of ovarian and bowel cancer. But there will always be exceptions.’

Helen Atherton, 36, spent 12 years believing she had IBS, when it was endometriosis.

This chronic condition causes heavy and painful periods.

Helen, an IT consultant from Jarrow, near Newcastle, says: I started to suffer excruciating stomach cramps and my bowel habits were all over the place; one minute constipation, the next, diarrhoea.

'My doctor was convinced it was IBS and gave me peppermint oil capsules to relax the bowel muscles.’

The medication made little difference, but on further trips to the GP Helen was told her problem was IBS. Eventually, she saw a gynaecologist privately.

‘He performed a laporoscopy (where a viewing tube is passed into the body to view the pelvis and lower abdomen) and diagnosed endometriosis,’ she says.

Helen was given hormone treatments and now keeps her symptoms under control with dietary changes, the occasional paracetamol and a TENS machine — a device thought to help tackle pain using tiny pulses of electricity.

‘Although things have improved, I find it hard to accept I was labelled as having IBS for so long,’ she says.

What can be done to prevent this One argument is GPs should be more proactive in referring patients for investigative tests. The reason they don’t is often financial.

But Dr Mowle says referrals are based on clinical need, not cost.

‘Some 99 per cent of patients who have symptoms associated with conditions such as bowel or ovarian cancer don’t have a cause to worry,’ he says.

‘If we did refer them, this would cause unnecessary anxiety. Additionally, many of these tests are invasive and not without risk.’

So to really minimise misdiagnosis, GPs and patients must work together, believes Dr Mowle.

‘Patients must let their GPs know what’s going on. Subtle changes to the bowels, pain during sex and the symptoms being cyclical as well as family history are important clues — they may be deemed embarrassing topics but patients know their health better than anyone else.’

Yet Lisa and Helen believe the onus should be on GPs.

‘In my view it’s the doctor’s responsibility to ask the right questions,’ says Lisa.

‘In hindsight, I should have mentioned my family history of cancer — my mum died of a tumour on the pancreas, one uncle had bladder cancer and another, bowel cancer — but it wasn’t something I thought of and I’m not alone in that.’

Helen feels equally strongly: ‘I could still be in excruciating pain if I hadn’t refused to give up and paid to see a consultant privately.

‘I was made to feel I was a bit of a hypochondriac, wasting my GP’s time. I spent a considerable part of my adult life trying to treat a diagnosis that was incorrect.’