'Nothing has worked': Women feel 'failed' by UTI testing system

'It's the most painful thing that I've ever experienced in my life': A number of women have opened up to ITV News' Stacey Foster about what it's like to live with a chronic urinary tract infection

Modern science has taught us so much, yet in some areas of health care there doesn’t appear to have been many strides taken to improve outcomes for patients.

Since the 1950s a test has been used to check for bugs in the urine, which can cause symptoms, including a burning sensation, "razor blades" - as described by some patients - and an urgency to go to the toilet frequently.

It seems astonishing that these tests are only 50-60% accurate and yet are used on a daily basis in primary care to diagnose (or not) a condition, which, if left untreated, could lead to a severe infection or sepsis.

I have travelled across England and Wales, talking to women who say they have been "failed" by countless medical professionals, who have not understood or been able to treat our most common infection - the urinary tract infection (UTI), often called a water infection or cystitis.

Many have have been told after going back to their doctor repeatedly that they simply "haven’t got an infection" because the test says negative or that "it’s in your head".

To be dismissed in this way when you are experiencing very painful symptoms must be so difficult to deal with.

One of the women who I spoke to was Dannii, who has just celebrated her 30th Birthday. She believes she now has a chronic UTI because an initial water infection wasn’t treated adequately.

Her condition dictates how she runs her life. She is nervous to leave the house, struggles to work or concentrate, and she told me that she doesn’t know if she’ll be able to have children because she fears if becoming pregnant will make her condition worse.

Caroline took antibiotics for seven years to help with her condition before deciding she could no longer tolerate the side effects. Credit: ITV News

Caroline is about to celebrate her 60th birthday and has her daughter’s wedding coming up at the end of the year. When I visited her at home, she told me she wonders how she’ll cope with her symptoms on that day because she takes her hot water bottle everywhere to rest on her abdomen.

She spoke openly about how much money she’d spent on remedies, saying: "Perhaps £10,000 or £15,000."

"But nothing has worked," she added.

I asked her what was next and she told me that she knew someone who had their bladder removed, but she couldn’t contemplate that. She is hoping for a cure. She hasn’t slept well for seven years.

Urinary tract infections affect your urinary tract, including your bladder (cystitis), urethra (urethritis) or kidneys (kidney infection).

The NHS has recently updated its website guidance, saying: "In some women, antibiotics do not work or urine tests do not pick up an infection even though you have cystitis symptoms. This may mean you have a long-term [chronic] bladder infection that is not picked up by current urine tests. Ask the GP for a referral to a specialist for further tests and treatment."

This has long been campaigned for by patient groups, including Chronic Urinary Tract Infection Campaign (CUTIC), which supports some 18,000 patients.

While we were filming our investigation, NICE (National Institute for Health and Care Excellence) introduced a new quality standard for diagnosis, stating that women who present with two or more key urinary symptoms should be diagnosed with a UTI without the need for a dipstick test.

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But as UTIs are a common condition, the underlying concern by health regulators is antimicrobial resistance. Some antibiotics that are used regularly are no longer working and that makes treatment much more difficult.

Dr Catriona Anderson, a GP with a specialist interest in UTIs, told ITV News that this actually leads GPs to not want to give antibiotics. But some patients that really need them aren’t getting them and, in some cases, are going on to develop chronic conditions.

"More urine samples go into laboratories for testing than any other human sample. So it's a massive problem and and it keeps us busy," she said.

"If only we could nip this problem in the bud good and early and the patient didn't keep getting these UTIs because we call them our 'revolving-door patients' because unfortunately the three day courses of antibiotics might provide a glimmer of relief for these patients, but with serious recurrent UTI, usually they relapse and they're back in again.

"And we do see some patients every couple of weeks throughout the year, year in, year out."

As with all NICE guidelines, they are not mandatory and professionals are expected to give them due consideration when assessing patients. But this updated advice for clinicians will take weeks or months to filter down to the front line of primary care.

When we visited Dr Emma Hayhurst, at her lab in South Wales, she said that Covid had undoubtedly helped her in developing a new test for UTIs. They developed a PCR Covid test, which has now moved to UTIs.

Ms Hayhurst said she had not realised the scale of the problem, explaining: "Estimates vary from 150 to 400 million people will suffer from a UTI around the world every year.

"About 90% of them are women and yet no good diagnostic tools are available for them. So you're giving all these antibiotics out without really knowing whether they're needed or whether they're the right ones.

"So we became interested in UTIs initially from that perspective, from the fact that we felt there was over-diagnosing and antibiotics being given out when they weren't needed.

"But then as we engaged with the community and spoke to more and more women, we realised that the under diagnosis is also a problem because, again, you then may treat some people that don't need treating, but you're also not treating some people that do need treating."

Whereas a dipstick takes seconds, Ms Hayhurst's test takes 40 minutes, but it can identify multiple different bugs in the urine, so clinicians can target treatments.

Dr Hayhurst told ITV News she has a 'real passion' to improve testing for UTIs. Credit: ITV News

Ms Hayhurst's vision is clear: she wants to see these tests used in care homes, carried by paramedics, in pharmacies and, eventually, in GP surgeries and hospitals.

Her team are under no-illusions that "our test isn’t perfect", but in trials it’s been shown to detect 95% of infections, which dipsticks just can’t do.

There is a consensus that better testing will lead to better treatments. While some believe the answer to chronic UTIs is developing new, non-antibiotic based treatments, GSK is currently in trials with a new antibiotic, called Gepotidacin.

The company says it could be the first new novel oral antibiotic treatment for uncomplicated urinary tract infections for 20 years.

If you have a chronic or recurring UTI though there is only one clinic in England where you can receive specialist treatment.

The Lower Urinary Tract Symptoms Clinic at The Whittington Hospital, in London, requires patients to be referred by a specialist and the waiting list is long.

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The clinicians only have capacity to treat about 1,600 patients and many are under three-monthly reviews.

The treatment is based on the research, which is carried out at the clinic by Dr Raj Khasriya, Consultant Urogynaecologist.

She said: "We’ve started to understand alot more about UTI and how bacteria behave in the bladder, and we were able to show that we need to treat patients for a quite a long time on a full dose of antibiotics."

The government accepts that women's health issues have not been at the forefront of science and has now developed a new Women and Girls Health Strategy to "right these wrongs" in England.

Part of the remit of that strategy is to listen to patients. Those we spoke to, who have been living with the symptoms of UTIs for years, overwhelmingly said they felt like they haven’t been listened to at all.

Support for those living with UTIs is available from a number of organisations, including:

  • Chronic Urinary Tract Infection Campaign (CUTIC) is a not-for-profit organisation that was founded by a small group of expert patients in 2016. They campaign for better access to treatments and can offer information for patients and links to support groups.

  • Bladder Health UK is a small, national charity which gives support to people with all forms of cystitis. It has a website and a number of social media platforms with readily available information for anyone in need.

  • Chronic UTI Global Support runs a Facebook Support Group, which has more than 16,000 worldwide members. People can join for free and gain access to content, including scientific knowledge on the disease and members who share their own personal experiences.