Susannah Fraser knew exactly what the arrival of excruciating abdominal pain, bloody urine and fever meant.
The debilitating symptoms heralded the arrival of her next urinary tract infection (UTI) and marked the start of another six weeks of pain.
“It’s excruciating – a red-hot searing pain that burns through you,” says Susannah, 55, a communications manager and mum-of-two who lives in the West Midlands with her husband Neil, 58.
These infections, caused when bacteria enter the tube that carries urine out of the body, occurred every two or three months for six years.
They left Susannah on the couch in pain for days and needed regular sick leave from work. They also meant she and her family often missed outings with friends – a particularly brutal infection ruined a family holiday to Jersey.
Susannah Fraser, 55, would get a UTI every two or three months for six years, leaving her lying on the sofa in pain for days and needing regular sick leave from work
Around half of all UK women will have at least one UTI at some point. This can affect the bladder (known as cystitis), the urethra (the tube that carries urine out of the body) or the kidneys.
It’s one of the most common reasons to see a GP – around a million women in England have recurrent urinary tract infections, which strike twice in six months or three times in a year, according to a 2015 study in the British Journal of General Practice.
Women are at higher risk of recurrent UTIs as they age (due to menopause and declining hormones); if they have had them previously; after sex, or if they experience any form of incontinence.
At the first sign of symptoms, Susannah would see her doctor, who would prescribe a three-day course of antibiotics.
As the infections became more frequent, she was given a daily antibiotic pill to take long-term to try to prevent further infections – in line with current official medical guidelines.
But while this reduced the number of infections, Susannah still had them every four months or so.
So six years ago, her consultant put her on a new treatment, a twice-daily pill called methenamine hippurate, which sterilizes urine and stops the growth of certain bacteria.
“It’s been incredible,” says Susannah. ‘I haven’t had a UTI for three years.’
A study in the BMJ in 2022 found that methenamine hippurate is as effective as long-term antibiotics in preventing UTIs (preventing recurrent infections in 50 percent of cases) and was substantially not associated with antibiotic resistance, offering a treatment option for those who do not respond to antibiotics .
The research was hailed as a game-changer. But campaigners have told Good Health that many women who could benefit from it are not given the chance to try it. One problem is that many GPs “have never heard of it – women are contacting Bladder Health UK to tell us this,” says Susannah, who works for the charity.
And this is just one of a number of problems women with recurrent UTIs face, experts say — these include inaccurate diagnostic tools and guidelines around prescribing short courses of antibiotics.
Women also often describe simply feeling ignored by doctors.
Around half of all UK women will have at least one UTI at some point. This can affect the bladder (known as cystitis), the urethra (the tube that carries urine out of the body) or the kidneys (file image)
Dr. Catriona Anderson, an NHS and private practitioner from Staffordshire who specializes in UTIs, says: ‘Many women at their first appointment with me burst into tears simply because I listen to them and believe their symptoms.
‘UTI is often seen and treated as a short-term problem’, she says, adding that deficiencies in diagnosis and care ‘are often due to a lack of knowledge on the part of GPs’.
The search for alternatives to antibiotics is driven by concerns about their overuse and creation of ‘superbugs’, bacteria that develop resistance to the drugs used to target them.
This leaves patients at risk of persistent symptoms, more serious infections and sepsis, a potentially life-threatening reaction to infection, according to the charity Antibiotic Research UK.
In an analysis of one million UTI samples in 2017 by Public Health England, one in three patients was resistant to the antibiotic then used as first-line treatment.
The 2022 methenamine hippurate study, led by Professor Chris Harding, a consultant urologist at Newcastle Hospitals NHS Foundation Trust, involved 240 women with recurrent urinary tract infections. Half received methenamine hippurate and the other half a low-dose antibiotic.
Methenamine hippurate is converted to formaldehyde in the kidneys, producing acidic urine that acts as an antiseptic and kills the bacteria that cause infection. The drug also kills a range of bacteria in the urine, rather than targeting specific bacteria as antibiotics do. Crucially, it does not appear to allow bacteria to develop resistance to it.
Side effects were comparable and mostly mild in both groups: 28 percent of those given methenamine hippurate reported problems including stomach discomfort and acid reflux, while 24 percent of those given antibiotics reported side effects including diarrhea and nausea.
Methenamine hippurate was licensed to treat recurrent urinary tract infections in women before Professor Harding’s research was published, but was not included in treatment guidelines issued to GPs by the National Institute for Health and Care Excellence (NICE). NICE announced that it would reconsider this in August 2022, but there has been no update.
“There are women who could benefit from trying it and we know that reducing our use of antibiotics is important to reduce resistance in bacteria,” says Professor Harding.
“We cannot guarantee that methenamine will be effective in all cases, but the majority of women in our trial experienced dramatic reductions in UTI frequency. This drug is a very useful addition to the treatments we can offer.’
NICE told Good Health that a decision on the drug would not be published until November.
A study in the BMJ in 2022 found that methenamine hippurate is as effective as long-term antibiotics in preventing UTIs (stock image)
Meanwhile, another problem for women with recurrent UTIs is not receiving adequate antibiotic treatment. The problem is that the bacteria embed themselves in the cells that line the bladder and urethra and reappear after the course of medication is completed.
Many doctors worry that standard UTI treatment — a three-day course of antibiotics — may be too short.
Dr. Rajvinder Khasriya, a consultant gynecologist at Whittington Health NHS Trust in London, says: ‘For many patients it’s just not enough. And then you yo-yo back to the GP for more treatment. And this on-and-off with antibiotics promotes resistance in the bacteria that cause the infection.’
That’s why they use ‘a lot’ of methenamine in her clinic. ‘It suppresses bacteria that grow and then it lets the good bacteria come back,’ she says.
“But there seems to be a postcode lottery: patients say some GPs will prescribe it, while others won’t or can’t.” NICE approval would encourage more GPs to prescribe it, says Dr. Anderson.
Another barrier to successful treatment is the standard tests — involving a dipstick and urine culture — which experts say can miss infections.
NICE guidelines state that most women under the age of 65 can be diagnosed without testing, solely on the basis of having two UTI symptoms, such as pain, frequent need to urinate and cloudy urine. But in less obvious cases (eg those under 65 and with only one symptom), a urine sample can be used. This involves putting a strip of treated paper in a urine sample – a color change indicates high levels of nitrites (produced by bacteria) and white blood cells, which can be a sign that the body is fighting an infection.
“The dipstick test is quick and cheap, but has a poor performance in ruling out UTI and misses many infections,” says Professor Jennifer Rohn, a cellular microbiologist at University College London.
‘It only looks for a few of the bacteria that we know cause UTIs. So if a dipstick comes back negative, the doctor can send you home without antibiotics and think you’re not sick.’
Pregnant women, people aged 65 and over and patients with recurring symptoms should have a sample sent for laboratory testing (called a urine culture).
Analysis of bacteria that grows can indicate the type of infection and which antibiotics will kill it.
However, the current threshold used by the NHS to diagnose a UTI (100,000 bacteria per milliliter of urine) is ‘an arbitrary and high number, developed from a small study 70 years ago’, according to Professor Rohn.
She adds that standard advice for women with UTIs to drink plenty of water also dilutes the urine and bacteria test and ‘dilutes the cells and bacteria that both tests are looking for’.
Campaigners and patients say it all adds up to an ongoing battle to get good care.
Susannah is relieved to have a treatment that finally worked. “Taking methenamine has given me the confidence to go out and live my life again,” she says.
‘I really want GPs and other women to know it’s out there.’