‘My doc told m I just h to liv with m chron UTIS Ctor me ad e my ic ’
Chronic urinary tract infections are only now getting the attention they deserve, but sufferers feel the condition is still widely misunderstood, hears
As Lucille Whiting lay in bed unable to move, her bladder burnt with searing pain. “It felt as though it was on fire,” she says. “I couldn’t stand or sit and was unable to sleep.”
Lucille, 40 had suffered from urinary tract infections (UTIS) on and off since she was 18, but in 2017 one struck which wouldn’t clear, leaving her in agony for several months.
“Nothing was working and I didn’t know what to do,” says Lucille, who lives in Suffolk with her engineer husband John, 43, and their five children.
Extremely common, UTIS are bacterial infections of the bladder which usually clear with a short course of antibiotics. But an estimated 1.5 million people in the UK – mostly women – suffer from chronic UTIS, which are classed as those that occur more than three times in 12 months or twice in six months. And some sufferers find that they don’t respond to antibiotics at all, leaving them with untreatable infections for months or even years.
“Many thousands of women are told the pain they’re suffering is imaginary, or just a women’s problem they’ll have to learn to live with,” says Carolyn Andrew, co-director of CUTIC (the Chronic Urinary Tract Infection Campaign).
“This is partly because traditional tests such as dipsticks and urine analysis only look for the bacteria e-coli.”
E. coli comes from the digestive tract and was once thought to be the only cause of UTIS.
The late Professor James Malone-lee, who was the inspiration for the founding of CUTIC, was amongst the first to point out that current testing is ineffective.
He wrote, “Many urine infections are caused by mixed colonies of bacteria, which can infect the lining of the bladder and become fastidious and extremely difficult to treat by conventional methods.”
Malone-lee, emeritus professor of medicine at UCL until his death in February, spent over 30 years working in the field and was one of the first to recognise the existence of chronic urinary tract infections.
He fought for patients who were told they had no infection and could not be treated, or that their symptoms were caused by stress or were imaginary. It is a frustration Lucille knows all too well, having begun suffering from recurring UTIS at the age of 18.
“I’d go to the doctor and get a short course of antibiotics, but within a week of finishing the an would come bac jewellery design com), who belie that she moved band’s work and GPS, as well as u treat her recurri
“I was being h they were sweet
Over the year tions into the de was told it was s women ‘just hav “But the pain is
“I went self-em work alongside employee you c sick.”
Meanwhile, th working. Amoxi nitrofurantoin n
ntibiotics, the infection
ck again,” says the ner (sophia-alexander. eves part of the problem is
around with her husd had a series of different using walk-in centres to
ing UTIS. handed antibiotics like
ts,” she says. rs, she asked for investigaebilitating condition, but something that some ve to learn to live with’.
unrelenting,” she says. mployed and managed to
my condition. If you’re an an’t just keep phoning in infections.
Then five years ago, Lucille had a particularly bad infection. “By this time I finally had a good GP. He never brushed it off or said it was a women’s problem.”
Lucille was referred for a cystoscopy which found Hunner’s lesions, distinctive areas of inflammation, in her bladder wall. She was referred to a specialist clinic and prescribed long-term antibiotics as well as urinary antiseptics. “It has been life-changing,” she says.
Helen Lucas, a fellow chronic UTI sufferer, developed a UTI in 2020 and immediately went to her GP, but three rounds of short-course antibiotics failed to clear up the problem.
“I was in agony,” she says. “I went from being a gym fanatic who ran half marathons, to someone who couldn’t even get out of bed.”
She asked for a second opinion from another GP, who diagnosed her as having a uterine prolapse.
“It was during the first lockdown and they wouldn’t examine me, so I don’t know how they’d know I had a prolapse,” she says.
She paid for a consultation with a private urologist, who ran a series of scans including an MRI and inserted a camera into her bladder under general anaesthetic. Unfortunately, the tests were inconclusive and showed only bladder inflammation.
Helen was bedridden for three months. “I felt so disillusioned and didn’t know where to turn,” she says.
While searching her symptoms online she found CUTIC’S website and asked to be referred to the LUTS clinic, an experimental lower-urinary tract clinic based at Whittington Hospital in London. They prescribe a first generation, narrow spectrum antibiotic in the highest dose tolerated by the patient, as well as antibacterial agent methenamine hippurate, which they say effectively turns the urine into a disinfectant.
“It was a huge relief that somebody was finally listening,” says Helen, whose condition is now manageable.
“I can exercise and walk and see my friends – I’m uncomfortable but I’m not in pain,” she says. “I just wish I’d been treated sooner as the infection might not have been so bad.”
Yet Helen counts herself as one of the lucky ones, as it only took 10 months to get to the bottom of her issues. “When people hear you’re on long term antibiotics, they shake their head at you and look disapproving,” she says.
“I wish more people knew about this condition so people didn’t have to suffer for months or years before being believed.”
I was handed antibiotics like they were sweets but the pain was unrelenting