Women suffering from chronic urinary tract infections (UTI) may finally have a universal definition in the coming months, paving the way for better diagnosis and new treatment options, The i Paper can reveal. 

Speaking exclusively to this newspaper, Labour MP Allison Gardner – who suffers from a chronic UTI herself – said a group of experts have “pushed ahead” with a clinical definition of the condition, which she hopes will be ready soon. 

Cat Anderson, a GP leading on the project, hopes the universal definition and accompanying “diagnostic aids” for doctors will be finalised in “early 2027”. She said it will “aid recognition, diagnosis and guide treatment pathways” for patients who have “struggled to access appropriate care”.

An expert panel of clinicians is currently going through the “Delphi method” to agree on how to define a chronic UTI. This involves gathering and refining expert opinions across multiple rounds until a consensus is reached, with the results expected to be published in a peer-reviewed scientific journal.

“Once we have that […] we can then really push ahead,” said Gardner, the Labour MP for Stoke-on-Trent South. 

After years of campaigners fighting to get acknowledgment that the condition even exists, the Government said it will work to improve “awareness and treatment of chronic UTIs” and reduce the impact they have on people’s lives. 

Patient-turned-campaigner Caroline Sampson said the recognition “vindicates all those who are suffering” but said the “next step” is for investment into more accurate diagnostic tools and improved treatment options to give sufferers their “lives back”. Current tests are outdated and proven to miss infections, while treatment is limited to long-term, high-dose antibiotics which are not suitable for everyone.

Without an official medical definition, the condition, that disproportionately affects women, is difficult to diagnose and treat. The condition occurs when bacteria from an acute UTI embeds into the bladder lining, triggering a long-term, persistent infection that is extremely painful.

It can affect women, men, children and the elderly, and can leave them bed-bound and unable to work, sleep, leave the house or socialise. In extreme cases, patients can be left in pain for years without proper support, leaving them feeling suicidal.

Experts hope that once there is scientific consensus that the condition exists, it will force the UK health authorities to take notice and open the door to more research funding. It may also enable the National Institute for Health and Care Excellence (Nice) – which provides clinical guidance to the NHS – to review the diagnosis and treatment guidelines. 

Leading NHS urogynaecologist Rajvinder Khasriya, who runs the Lower Urinary Tract Symptoms (Luts) service at the Whittington Hospital in London, said the definition must be based on “clinical evidence and patient experience” rather than the results of a urine test. Currently, patients who describe real, persistent symptoms are turned away from doctors because an outdated diagnostic test has come back negative. 

“We know standard urine cultures miss a large share of these infections, yet many women spend years being told it’s anxiety, overactive bladder or ‘all in their head’,” Khasriya said. 

She said chronic UTI is a “textbook example of how bias shapes medicine”, adding that it leaves patients needlessly “exhausted and traumatised”. 

Gardner, the co-chair of the new All-Party Parliamentary Group (APPG) for UTIs, said she lives “in fear” of her condition returning to its worst point, when she had suicidal thoughts due to daily debilitating pain. 

“I can’t live like this. If I don’t find something to solve this soon, I can’t live like this,” she said, recalling a time when the pain was so severe that she was considering getting her bladder removed or selling her house to pay for private treatment. 

Gardner said she wanted to try “everything” she could rather than “jump straight to the worst of all possible actions”.

She said she was “incredibly lucky” that treatment with long-term antibiotics under a specialist doctor was a success. But this treatment does not work for everyone and patients are calling for research into different options.

Gardner said that while her condition is now “mild”, she is still in “quite bad bladder pain at the moment” and has been throughout summer. “It’s very, very debilitating. I live in fear that eventually it’s not going to be managed, and I will go back to how I was.” 

The situation is even worse for children, who cannot get NHS treatment until the age of 18 or private treatment until 16 due to current treatment guidelines. Gardner said one of her constituents – a young girl – has been left with lifelong kidney damage due to an untreated chronic UTI. 

“So this is why the impatience,” she said. “There are women out there who lose their relationships, who lose their jobs, who almost lose their homes.”

Female patients ‘ignored and disbelieved’

Gardner called on ministers to address the “medical bias” surrounding the condition, with women usually given three days of antibiotics when presenting at the GP with a UTI, while men typically receive a seven-day course. Studies have suggested that three-day courses are inadequate for some patients and can trigger a chronic infection. 

Chronic Urinary Tract Infection Campaign (Cutic), a charity dedicated to raising awareness of the condition, said female sufferers are often “ignored and disbelieved by urologists” with many told their symptoms are mental rather than physical and refused treatment.

The Department for Health and Social Care has said it is “committed to improving awareness and treatment of chronic and recurrent urinary tract infections, and reducing the impact they have on so many people’s lives”. 

“Through our Women’s Health Strategy, increased investment in research, and improved women’s health and urogynaecology care, we are working to ensure that women are listened to at every stage, and given access to the high-quality care they need,” a spokesperson said. 

Luke Taylor, the Liberal Democrat MP who co-chairs the UTI APPG, said he was “disappointed” that the update to the Women’s Health Strategy in June fails to mention chronic UTIs. 

“We are also yet to see any movement on updating the Nice diagnostic guidelines to finally acknowledge the existence of chronic UTIs, so it’s clear that there is much more to be done to get the Government to understand the urgency of correcting this,” he added.

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