The 1920s treatment that can beat the misery of CYSTITIS

Bladder infections such as cystitis are extremely common, yet many patients — typically women — end up being misdiagnosed. So they miss out on treatment that could help them and instead are left in agony, often for years, and undergo painful procedures they do not need, say campaigners.

Carolyn andrew’s story is typical. For eight months, she struggled with her symptoms — sometimes needing to pass urine up to six times an hour, with severe pain in her bladder — which doctors insisted were not caused by an infection, leaving her ‘desperate’ and ‘suicidal’.

Her problems began in august 2014 after a four-and-a-half hour, 300-mile car journey she and her husband Jack, 67, a retired engineering lecturer, made from their home in Bushey, Hertfordshire, to the edinburgh Festival. ‘We wanted to get there quickly, so I had to hold on for the loo,’ recalls Carolyn, 65, a retired college lecturer.

Not long afterwards, she noticed the characteristic symptoms of cystitis, a burning sensation when passing urine and pain in the bladder. Her symptoms worsened and she saw a GP who sent a urine sample to a laboratory, prescribing an antibiotic in the meantime.

But it made no difference and, two days later, the GP phoned her to say lab test results for an infection were negative.

Back home, Carolyn was tested by her GP four times, but each time, the test came back negative: she didn’t have an infection. Her symptoms persisted and four courses of different antibiotics failed to clear them.

‘By this stage, I also had a dull ache in my bladder and was needing the loo six times an hour,’ says Carolyn. ‘I just couldn’t get out of the house.’

It wasn’t until May 2015 when she saw a specialist — James Malonelee, an emeritus professor of medicine at University College london, who has revived an old approach to diagnosing cystitis from the Twenties — that she was finally diagnosed.

Yet by this time, Carolyn had been told she had long-term interstitial cystitis and had undergone a procedure to increase the capacity of the bladder by inflating it with fluid in a bid to reduce the frequency of urination. In Carolyn’s case, it made no difference.

She had also had a cystoscopy, where a camera is inserted into the bladder — this showed it was inflamed and she was prescribed medication to stop the bladder contracting abnormally.

She had to stop taking it after she suffered side-effects.

‘I’d lost a stone in weight in just over a month and isolated myself from friends and family and felt suicidal,’ she recalls.

She saw yet another GP who prescribed the antidepressant amitriptyline because it can stop the bladder’s muscles contracting.

‘It did reduce the frequency, but the pain got worse,’ says Carolyn.

YeT, once she was correctly diagnosed and on the right long-term antibiotics, Carolyn was pain-free within six days. Bar the odd flare up, she’s had no symptoms since.

Four million people a year in the UK suffer urinary tract infections, (UTIs), most commonly cystitis. The majority are women (their urethra is closer to the bottom, so is more prone to contamination).

Symptoms include burning or stinging pain when passing urine, frequent urination and a feeling of urgency, even when the bladder is empty. For most patients, a short course of antibiotics will sort it out within days. But, according to the Cystitis and Overactive Bladder Foundation, for 400,000 women like Carolyn it’s not so simple, and the painful symptoms don’t go away. Yet urine tests come back negative for an infection and they’re diagnosed instead with interstitial cystitis and overactive bladder (a problem that causes a sudden urge to urinate and is treated with drugs to relax the bladder).

Unlike other types of cystitis, there is no obvious infection.

But campaigners believe many women diagnosed with interstitial cystitis may actually have cystitis that is caused by bacteria.

The problem, they say, lies with urine dipstick tests, which miss up to 50 per cent of infections, or the mid-stream laboratory culture tests, which they believe miss about the same amount.

These infections tend to persist because they either aren’t treated early enough with antibiotics or the dosage or course is not high or long enough to kill off the bugs completely, so they survive and the infection becomes chronic.

‘Failures in the diagnosis of chronic urinary tract infections condemn many sufferers to a life of agony and painful, ineffective surgical interventions (such as cystoscopies, biopsies and bladder stretches)’, says alison Taylor, of the Chronic Urinary Tract Campaign, a patient-led pressure group. The issue was raised in parliament last week by Catherine West, labour MP for Hornsey and Wood Green.

The Minister for Public Health and Innovation Nicola Blackwood has agreed to discuss how this can be changed, and has asked the NICe (National Institute for Health and Care excellence) guideline surveillance committee to look at the research of Professor Malonelee, the expert who saw Carolyn.

PrOFeSSOr Malone-lee, who has a specialist bladder clinic in Hornsey, North london, uses a different type of urine test that involves a microscope to check a fresh sample.

This technique, introduced in the Twenties, was overtaken by testing of samples at a laboratory and, in the eighties, by dipstick tests.

The microscope method, he says, picks up undiagnosed UTIs.

He then treats patients with a long-term high dose of a low spectrum antibiotic (which targets fewer types of bacteria, but reduces the likelihood of antibiotic resistance) and which is stopped, then restarted. He also prescribes an antiseptic (Hiprex), which stops the growth of bacteria in urine.

It is a controversial approach, because the standard treatment recommended by NICe for acute UTIs is a three-day course of antibiotics for an uncomplicated infection and five to ten days for a complicated one.

For recurrent infections, if patients fail to respond to treatment, or further tests are negative, then a diagnosis of interstitial cystitis should be considered.

Professor Malone-lee told Good Health: ‘I’m seeing people in a desperate state — on average, they have been coping with a chronic urinary infection for six-and-a-half years before they get to see me.’

He says dipstick tests aren’t sensitive enough and lab cultures tests have thresholds that don’t pick up lower level infections.

GPs and consultants shouldn’t rely on tests, he adds, and should take a careful history and examine the patient. ‘I test fresh samples under a microscope and do a white blood cell count — this picks up many previously undiagnosed bacterial infections.

‘I accept that long-term courses of antibiotics are not ideal with the growing problem of antibiotic resistance, but we shouldn’t let this be used as an excuse to deny treatment to patients who need them.’

dr Brian Parsons, a urology fellow at Guy’s Hospital, agrees there is a case for a more accurate test, but adds: ‘I think microscope tests would probably be too timeconsuming for GPs to perform.’

The dipstick test takes seconds to perform, but microscopy takes five to ten minutes.

eighteen months on, Carolyn is still taking antibiotics, but hopes to come off them eventually.

She says: ‘Something needs to be done to stop thousands of women, and men and children, going through such agony.’