5/20/2019 'In pain all the time': will there ever be a cure for chronic, life-changing UTIs?

chronic, life-changing UTIs? | Society | The Guardian

'In pain all the time': will there ever be a cure for
chronic, life changing UTIs?
Urinary tract infections are painful but usually short lived. For thousands of women and children
though, the problem can last years. Is relief in sight?

Sarah Boseley and Hannah Devlin

P
oppy was travelling the world when it began. It started in Malaysia and got worse in
Australia. The student had the infection for a few weeks before she saw a doctor and
was given a quick hit of broad-spectrum antibiotics. They didn’t work.

“I went on getting worse,” she says. “I was not in any city long enough to do a full
culture and wait for the right antibiotics.”

Finally, after a month, she was given treatment that helped, but it was a temporary respite.
Fifteen years later, Poppy (not her real name) is still often in pain. The infection was an attack of
cystitis, a common acute urinary tract infection (UTI). Back in the UK, her condition became
chronic. “I got stuck in a cycle of infection.”

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Most people – and most doctors – think of UTIs as nasty but short-lived. It is unclear how they are
contracted, but according to the NHS “most cases are thought to occur when bacteria that live
harmlessly in the bowel or on the skin get into the bladder through the urethra (the tube that
carries urine out of your body)”. The standard test is for bacteria in a urine sample. The standard
treatment is three to five days of antibiotics. A one-off acute attack can be cleared very quickly.
But there are thousands of women whose experience is very different. They cannot get well. They
have chronic infection that dominates their lives. They spend months and years in and out of GP
practices and hospitals, having tests and treatments that sometimes exacerbate the problem. And
to make it so much worse, they feel they are not taken seriously.

Prof James Malone-Lee.

“One male consultant said maybe I was washing too zealously. Male GPs asked why I was crying.
I’m crying because I’m in pain and I’m scared and no one seems to know what’s wrong,” says
Poppy.

“I don’t understand how we can do heart transplants and land on the moon and not kill the
bacteria in my bladder.”

“It’s a scandal,” agrees Jade Henderson, 27, who lives in Durham and experienced a number of
acute UTIs before hers became chronic in February 2017. “I was hardly leaving the house because
I was constantly feeling I needed the toilet. Some women have really bad pain. Mine was more of
a constant discomfort where I couldn’t put my mind to anything apart from feeling I needed to go
to the toilet.”

She was unable to work, suffering stress and anxiety. “I was in a long-term relationship at the
time. A guy I’d been with for five years. It had an impact on my sex life and that relationship broke
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down. There were other factors. But that probably played a part.

“The mental effect was awful because I was constantly going to the doctor’s and my GP was none
the wiser. I was getting urine samples sent away that were coming back normal. I saw urologists
in the NHS who rolled their eyes and told me there was nothing wrong.”

Like many others, she searched for help online because GPs and urologists diagnose conditions
that seem to be labels for an unfixable problem – painful bladder syndrome or interstitial cystitis.
There is no offer of a cure. Many of these women – and it is usually women although not solely –
converse in Facebook support groups and talk of a clinic at the Whittington hospital in north
London and a consultant – Prof James Malone-Lee, who has pioneered a different approach.

Malone-Lee recently retired from the NHS, but his research, his private practice and the handful
of doctors who have adopted his thinking, continue the work. The gold-standard UTI test, used
since the 1950s, is no good for a chronic UTI, he says, because it does not detect bacteria hidden in
the bladder’s lining. In a recent study, Dr Jennifer Rohn, principal investigator of the chronic UTI
group at the Royal Free hospital and University College London, found that the test “failed
spectacularly” when compared with DNA analysis, which picked up infections the standard test
missed every time.

Malone-Lee put it even more strongly. “For decades, patients suffering appalling symptoms have
been betrayed by a urine test that isn’t fit for purpose,” he said in December.

Some in the medical establishment are anxious about his treatment, because he gives women
months or even years of antibiotics. But a published review of outcomes for 624 women treated
over 10 years at the Luts (lower urinary tract symptoms) clinic at Hornsey central health centre
showed that they got better, just one had a serious side-effect and that there were no instances of
antimicrobial resistance. That one case of a serious side-effect resulted in the clinic being closed
down for some months. A research paper subsequently found the other patients got worse during
the closure.

Henderson is typical of the women treated at the clinic. “Until I found the professor, I just felt
alone and wondered would I ever get better? Would I ever get back to a normal life?” she says.

What does she mean when she calls it a scandal? “The tests that the NHS use as gold standard
miss 50% of infections,” she says. “The fact that this condition’s not recognised by the NHS, not
really. It is so very, very common.” People with chronic UTIs become expert patients. More expert,
they believe, than their doctors.

She knows of many fellow sufferers through her Facebook group, but happens across them in her
everyday life, too, which makes her think it is far more usual than people realise. “I was dating a
guy and told him about the problems I’d had with my bladder and he said he’d got a female friend
who had been off work for about nine months with her bladder. She was really poorly, on
morphine. Anyway, he put me in touch with her and she ended up going to see the professor. This
was about seven months ago. She’s getting a lot better. She had ulcers in her bladder – but the
antibiotics seem to be working a treat.

“There are clearly so many women out there and even specialist urologists have no knowledge of
it at all. It’s trying to change beliefs that have been instilled into doctors for so many years.”

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She likens Malone-Lee to “a one-man band trying to educate all these urologists and GPs. It’s
going to take time. Many women are being fobbed off.”

UTIs are commonly thought to be an affliction of mostly elderly people. But there are many young
women who suffer chronic infection – and even children.

Alice was just three years old when she developed a UTI, possibly from a swimming pool, says her
mother, Alison Taylor, who lives in Oxford. “We went to the GP. She was given a course of
antibiotics and it did clear the infection, but, 36 hours later, the symptoms were back with a
vengeance.”

Alice had pain in her lower abdomen. “She wasn’t able to sleep. She was running every five
minutes to the loo,” says her mother. It was distressing. “When they are tiny, you feel very
responsible for them.”

Jade Henderson.

They kept going to the GP. Urine tests came back negative. “It was heartbreaking. I was
desperately hoping the cultures would show something and she could be prescribed antibiotics
and it would all go away,” says Taylor. But they showed “mixed growth” or “insufficient growth”,
which were classified as negative results.

One time, when Alice was distressed, her mother called the NHS’s 111 medical helpline. “The call
handler told me it was just the symptoms of a urinary tract infection and the GP would prescribe a
course of antibiotics and everything would be all right. I just felt sick because I knew that was not
the case.”

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They were referred to hospital, where scans and more tests all came back negative. “We spoke to
one consultant who said: ‘We think she has painful bladder syndrome. Even presented with all
the classic symptoms of an infection, we were being told she doesn’t have an infection. It was so
worrying and so frustrating,” Taylor says.

“The paediatric urologists were “lovely” and “wonderful”, but fixed in their assumptions. “They
put so much false faith in the tests. It was like talking to a brick wall.

“It was just a terrible time,” continues Taylor. “I felt so vulnerable and incredibly worried.”

She found references online to D-mannose powder, which small studies have suggested may help
prevent infection. “It was just a simple sugar. I thought it was worth trying. We didn’t have
anything to lose,” she says.

Meanwhile, she had found a GP who specialised in chronic UTIs, who sent Alice’s urine to a
private lab where it was cultured longer and was found to have an E-coli infection. Taylor was
reluctant to have her daughter on a long course of antibiotics and the D-mannose seemed to be
working, so they decided to wait. Alice was fine for three years. When the symptoms returned,
and various short-course antibiotics didn’t work, she was referred to Malone-Lee.

Alice, now six, was missing school, says Taylor. “It impacts on every area of a child’s life. She was
incredibly anxious and depressed. When her symptoms were really bad she said to me: ‘Mummy,
I don’t want to live like this.’”

Malone-Lee saw her within days and started her on long-term antibiotics, warning that it would
take time, but after nine months of treatment, she has made a full recovery. “Her quality of life is
back. She is a totally different individual,” says Taylor, who now helps support other parents.
Through this involvment, she says she has heard of children being prescribed morphine to control
the pain. “What is happening is appalling,” she says.

Malone-Lee says that by the time patients arrive at his clinic they have, on average, been suffering
from a chronic UTI for six-and-a-half years. “My experience in seeing new patients is always the
same. There’s a kind of panic inside me to get this right because it’s had such a terrible toll on
them,” he says. “They’re in pain all the time, they can’t have sex, their personal relationships are
an awful mess, they’re so unwell many of them can’t work, go on holiday, socialise ... They know
there’s something wrong, but keep being told there’s not. It’s frankly a nightmare.”

He says the flaws in current methods for diagnosis date back to some of the earliest research on
UTIs in the 1950s. It was thought, incorrectly, that the normal human bladder is completely
sterile. So if bacteria grew in a cultured urine sample it was thought to signal an underlying
infection. In an early paper, an arbitrary threshold was put forward as being indicative of a true
infection rather than contamination. And despite this threshold never having been properly
validated, it gradually became accepted.

For any given patient, it is difficult to pinpoint which particular microbe is causing the problem –
it may even be interactions between several. Nevertheless, Malone-Lee and his team have been
investigating possible candidates and what they discovered could help explain why UTIs can be
so hard to treat.

When they grew one bacterial species, called Enterococcus, in culture along with bladder cells, it
displayed a range of alarming tactics to evade treatment. The bugs were sometimes seen to
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burrow into cells and form “nests” on the interior. They would then go into hibernation,
sometimes for months at a time, during which time they would be invulnerable to attack by
antibiotics. At other times, bacterial colonies morphed into biofilms that glued themselves to the
outside of cells and, again, entered a temporarily dormant state.

The findings explained why short courses of treatment can be ineffective: while bugs that are
floating free in the bladder are killed off, a reservoir might remain inside cells or on the surface of
the bladder wall. As cells in the bladder wall are shed during the course of a natural life cycle, the
dormant bacteria is released, re-activating the infection.

The bladder wall completely regenerates over a period of about nine months. And some patients,
Malone-Lee argues, will only be rid of their infection by treating them for at least this long.

Instead of relying on culture tests, Malone-Lee’s lab developed a treatment regime informed by
the patients’ symptoms and also the presence of white blood cells in the urine, which are
normally indicative of an infection.

Typically patients are treated with antibiotics until the symptoms are gone and the white-blood-
cell count returns to normal. They are then monitored to see if signs of an infection reappear. If
they do, they are put back on the antibiotics. The average time for patients at the clinic to
completely come off drugs is about a year.

Some very senior clinicians support Malone-Lee’s work. Mark Slack, head of gynaecology at
Addenbrooke’s hospital in Cambridge, regularly sees patients debilitated by chronic UTIs,
describing the condition as a “major problem”. “In 20 years we haven’t advanced one inch from
where we were,” he says.

He is critical of those who dismiss patients’ problems as being primarily psychological – instead
saying having a UTI for long enough can impact a person’s psychological well being. He says he
has had patients who have been completely well, then get what seems to be a UTI and become
virtually disabled.

Nikesh Thiruchelvam, a consultant urologist also at Addenbrooke’s, has sent some of his patients
to Malone-Lee.“There are much more expensive but higher quality techniques for urine cultures
that are not used in clinical practice,” he says, describing the usual tests as “outdated”.

Malone-Lee’s published data “shows quite good results” says Thiruchelvam. But it is
retrospective and not a randomised trial. There is also the difficult issue of long-term antibiotics
at a time when the NHS is trying to use these vital drugs less to preserve their power against
bacterial resistance.

Yet there is a way forward: a clinical trial. He thinks the National Institute for Health Research,
part of the NHS, should commission one – and the patient groups should push for it to happen.

Cutic, the chronic urinary tract infection campaign, run by patients and families, is calling for
better testing and treatment for the half a million people in Britain it estimates are suffering from
chronic UTIs. They say the 10-year study on the efficacy of long-term antibiotics for the treatment
of chronic Luts was “very persuasive”.

Alison Taylor is one of those who believes the evidence is already clear.

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“The international research is supportive of Malone-Lee’s findings,” she says. “He is not a lone
voice at all.”

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