Chronic Urinary Tract Infections

Alex Easton Excerpts

Wednesday 21st May 2025 Westminster Hall

[Luke Taylor]

Absolutely. I thank the hon. Member for raising those related issues, which are so important to consider. I will come on to talk about the wider challenge of women’s health being treated without the importance that it requires. I understand that she is attempting to secure a debate on a similar subject, so I wish her the best of luck in that endeavour.

Many of us have already heard of this illness and have heard people’s stories. I first learned about it from my constituent Phoebe, who has lived with a chronic UTI since she was three years old. Now in her mid-20s, she has become a tireless advocate for others suffering in silence. She shows remarkable perseverance and strength, even when the pain she lives with is beyond anything I can describe. Phoebe is here with us today, along with a number of other sufferers. It is my absolute privilege to stand in this place and speak for them and every other individual enduring such an awful condition. Will the Minister meet me, Phoebe and representatives of other campaign groups to hear how they have been let down by the system?

A chronic UTI is not just a diagnosis; it is at present a life sentence of torture that eats away at every part of a person’s existence. The condition first develops when bacteria from an acute UTI become permanently embedded in the lining of the bladder. Left untreated, the infection becomes entrenched, wreaking long-term havoc on the rest of the body.

I want to be absolutely clear: a chronic UTI should not be confused with the recurrent version of the condition. A patient diagnosed with a recurrent UTI might experience one or two infections over a six-month period. Although it is still serious, patients suffering from a recurrent UTI experience distinct intervals of relief from their symptoms. Chronic UTI sufferers live in constant and excruciating pain, with the infection never relenting. They are in agony every single day and every single night. Many sufferers have lived with the condition for decades, with the illness at present incurable.

Chronic urinary tract infections can affect anyone at any age, but they disproportionately affect women. At the UK’s only NHS specialist clinic, which I will come on to later, 95% of patients are women; only 5% are men. Individuals living with a chronic UTI are often forced to urinate more than 20 times an hour. I have been told that each time they use the toilet, it feels like they are passing razor blades through their urethra. Their urine is bloody. Their bladders are so tender they struggle to walk, and their bodies are consumed by fever. In many cases, the prolonged infection spreads from the bladder to the kidneys and the bloodstream, causing sepsis, with complications for other organs.

I have been told harrowing accounts of the agony caused by this illness. The pain has been likened to corrosive acid burning through the abdomen, glass shards lodged in the bladder and the feeling of mice eating away at the sufferer’s insides. Some liken it to scorching knives slashing forever at their stomach, or a hot cauldron constantly bubbling in their groin. The most common comparison I hear is that people’s bodies are perpetually on fire. To reiterate, the torment never stops—for the majority of patients, it is 24/7.

These symptoms destroy lives overnight. The illness renders individuals severely disabled, often forced to live a life of bedbound isolation. The pain is so overwhelming that patients can lose their ability to sleep and become trapped in a cycle of exhaustion. Household chores become impossible, and individuals can lose the ability to care for their children. Sufferers often lose their dream careers, as they cannot function with their symptoms in the workplace. They are unable to work or afford costly bills for private medicine.

Young adults living with the condition often have to forgo university studies, with the severity of their agony making their education unbearable. Romantic relationships break down, with at least one case of a marriage of over 40 years ending due to the illness. Sexual intercourse is virtually impossible due to the immense pain. Many people with the condition fear they will never be able to start a family. Patients face an utter loss of independence and, unsurprisingly, depression and suicidal ideation are daily struggles for the chronic UTI patient community.

This brings me on to my second ask for the Minister: every healthcare professional in the UK must be properly briefed to recognise and treat a chronic UTI. Since 2022, the NHS website has formally recognised the existence of chronic UTIs, yet I have heard that many GPs and urologists still deny the existence of the illness. Patients suffering from chronic UTIs are left to fight for recognition and are misdiagnosed with conditions such as internal cystitis or recurrent UTIs.

[Alex Easton (North Down) (Ind)]

Does the hon. Member agree that part of the issue is the use of antibiotics, to which UTIs are becoming immune? The medical profession cannot keep up with treatments, and there is a case for better education of the general public in terms of sanitisation. I know it is possible to get UTIs in different ways, but it would be helpful to educate and remind the population about sanitation.

[Luke Taylor]

The hon. Member is absolutely right. Many of our modern medicine practices are designed around avoiding the build-up of antibiotic resistance. The intention is to allow high-dose, effective antibiotics to be available when required, yet so many sufferers tell us that when they go to the doctor because they require those antibiotics, they are denied them. If this is not a case where those effective antibiotics must be used, even though resistance must be avoided, there cannot be a better example of the mismatch between intention and practice. I will come on to that in more detail, but I thank the hon. Member for making that point.

The misdiagnosis of chronic UTIs does not lead to effective treatment and compounds sufferers’ agonising pain with awful frustration. At their most vulnerable and weak, they are being forced to prove that what is happening to them is real. That is Kafkaesque, and it is totally wrong. The key problem appears to be that specific National Institute for Health and Care Excellence guidelines do not exist for chronic UTIs in England, and Scottish Intercollegiate Guidelines Network guidelines do not exist for the condition in Scotland. NICE guidelines for acute and recurrent UTIs exist, but as I have outlined, they are not fit for purpose for this chronic condition. How can GPs and urologists provide and recommend proper care, as the first point of contact with the patient, when there are no clear clinical guidelines?

Without guidelines, many medical professionals are practically blind to the condition. They cannot prescribe the right antibiotics to relive patients’ pain because chronic UTIs are not even on their radar. Chronic UTI specialists do exist, and they recognise the condition and can help treat symptoms, but without proper guidance GPs and urologists, unintentionally or not, block patients from reaching them and refuse their requests for referral. Many chronic UTI sufferers have post-traumatic stress disorder from their interactions with medical professionals, never mind the suffering from the condition itself. I have heard stories of patients being essentially gaslit by medical professionals, told that the concern is all in their heads, denied antibiotics and given antidepressants instead. It seems that some GPs and urologists have dismissed the illness as a women’s problem and have told patients just to deal with the pain. That is not medicine; it is misogyny.

I urge the Minister to push for the creation by NICE and SIGN of guidelines on chronic UTIs that are distinct from those on recurrent UTIs. That is long overdue and will hopefully bring to an end those kinds of interactions between suffering patients and GPs, but that alone will not be enough. There have to be better treatment offers for chronic UTI patients further down the pipeline. Right now, there is just one NHS specialist clinic in the entire country: the lower urinary tract symptoms clinic at Whittington hospital in London—one clinic for a nationwide illness. It offers fantastic support for patients, but waiting times are too long. We all know that waiting lists are far too high across the NHS— I commend the Government for their approach to bringing waiting lists down generally—but for chronic UTI sufferers forced to compete for the time of a solitary clinic, the effect is even more pronounced. Sufferers wait months, even years, for help if they are lucky enough to secure a referral in the first place.

Even once patients get to the clinic, relief is still not guaranteed. The LUTS clinic offers long-term, high-dose antibiotics that can treat the symptoms, but they bring only partial relief, leaving many dragging themselves through life exhausted, drowsy and still in pain. That is not really living; it is enduring. Worse, the antibiotics do not work for everyone: about 30% of patients cannot tolerate them at all. Imagine the despair of being in that 30%.

The situation would be scandalous enough if it were simply the case that, in desperation, many chronic UTI patients turned to private healthcare, spending thousands of pounds that they do not have just to access the bare minimum of care, but it is more awful than that. Some are forced to go to even more extreme lengths and choose risky, experimental procedures just to lessen their suffering. They fly abroad and pay unlicensed doctors more than £30,000 to have their bladders surgically removed. Let me say that again: people are choosing to have their organs ripped out in foreign countries because mainstream healthcare in the UK offers them nothing.

For some, those risky surgeries offer relief, but for many the infection is already in their kidneys, and they return from the operation bladderless and with multiple complications. Some suffers, with few options left, make a choice that should haunt us in this House. Rather than live another day like that, they take the most extreme choice of all: to take their own life. That is not how people should be living in modern Britian, and that is why we should spare no expense in researching better treatments and, of course—as so many dream—a cure.

I argue that the Government have an obligation, no matter the prevailing economic circumstances, to expedite the day that that becomes a reality. Promising medical trials already under way in the UK show real potential to transform how we treat chronic UTIs. Those treatments are ready to progress to human trials; the only thing standing in the way is funding. I urge the Minister to look into the roadblocks to getting more funding to the trials, and to come forward at the earliest opportunity with a plan to put conditions that are under-diagnosed and under-prioritised, such as chronic UTIs, at the front of their research agenda for this country’s biomedical research industry. I would be happy to put the Minister in touch with some of those working at the cutting edge of treatment in this field.

I have told the story of chronic UTI sufferers and their longing for relief—a relief the Government can help them seek if they back their cause—but I remind the House that the condition exists in a much wider context: health issues that mainly impact women are consistently neglected and routinely dismissed. We know that women wait longer in accident and emergency departments. We also know that just 5% of global health research goes towards conditions that exclusively or disproportionately affect women. Even though 15% to 20% consult doctors for chronic pain, it was only this year that the Royal College of Obstetricians and Gynaecologists introduced an optional training module on chronic pain for trainee doctors.

Inquiries such as Paterson and Cumberlege laid bare the systemic failures in how women’s health is treated in this country, but implementation and cultural change have lagged far behind the words. I have wondered many things since I first heard stories of chronic UTI sufferers, but nothing has unsettled me more than the lingering thought that if more men were affected by the disease, we would have had better treatments decades ago. That is an oft-used cliché but it comes up time and again.

The Minister has heard today about the scale of unimaginable pain that those with chronic UTIs experience. She has heard about the broken diagnostic system that stops too many sufferers getting the help they need. She has heard about the roadblocks to developing better treatments that are standing in the way of relief. I simply reiterate my asks. Will she and her officials meet me and these brave sufferers to hear more about the specific actions that the Government need to take to clear the roadblocks? Will they commit to pushing for the NICE guidelines to be brought up to date to reflect the latest understanding of this disease? Will they outline what steps they are taking to combat the wider problem of the neglect of women’s health issues? Chronic UTI sufferers deserve so much more.