Everything you need to know about chronic UTIs

When I first experienced a routine urinary tract infection at the age of 16, I never imagined that my symptoms would continue for the next ten years, often becoming so debilitating that I can’t leave my bathroom—let alone the house. 

But UTIs are a minor ailment, right? Something women just get? Not quite. There’s also a crucial difference between short-lived infections and chronic UTIs, although the two are linked. 

In adult women, acute bouts commonly occur courtesy of sex, when movement and bodily fluids enable bacteria to get into the urethra—the tube connected to your bladder. While it’s true that having a vagina makes you more likely to contract a UTI, because this particular piece of anatomy is comparatively shorter (lucky us), the condition is subject to misconceptions—even among doctors. 

Cranberry juice is often used as a natural remedy for UTIs

This is despite its prevalence, and the Office on Women’s Health estimates that more than half of women will experience at least one routine UTI in their lifetime. Still, they are often perceived as a trivial ailment cured by a cocktail of cranberry juice and ungodly amounts of water.

It’s true that these home remedies might provide symptomatic relief for some people, but most cases will require antibiotic treatment. In fact, not getting rid of bad bacteria is what causes chronic infections. Left to multiply, the bugs are free to embed into the bladder wall, where they can evade traditional tests and treatment.

Once the bacteria have taken root, they intermittently shed into urine, causing symptoms including burning sensations, constantly needing to urinate, and pelvic pain. Currently, the Chronic Urinary Tract Infection Campaign (CUTIC) estimates that over 1.6 million women in Britain are suffering from these sorts of chronic symptoms. 

Despite established research, chronic UTIs weren’t included on the NHS information page for UTIs until last year, seven months after a respective campaign led by sufferer and NHS programme manager, Leah Herridge. This delay reveals a longstanding neglect of the condition.

It’s an injustice recognised by Carolyn Andrew, a spokesperson for CUTIC. “Chronic UTIs are not currently acknowledged by the health systems in the way they should be. In part it is probably due to the fact that UTIs are seen as a ‘minor, women’s illness’,” she explains. 

The systematic neglect is both exacerbated and perpetuated by poor frontline understanding, says Andrew. All GPs operate under guidelines produced by NICE that contain treatment recommendations for a variety of conditions. However, there is currently no explicit guidance for adult women with chronic UTIs. As a result, doctors often rely on diagnostic and treatment guidelines for acute and recurrent infections, which CUTIC say are not appropriate. 

To test for UTIs, doctors typically use dipsticks (small strips that are dipped into urine to measure things like acidity and immune response) and urine cultures (which means growing bacteria from your sample in a lab). Yet according to research, dipsticks detect only 40 per cent of chronic infections, and cultures miss up to 90 per cent. 

Thanks to extensive campaigning by the likes of Herridge, the NHS website does now acknowledge that chronic UTIs might not be picked up by traditional tests and while this should be welcomed, patients continue to report that the changes are yet to be reflected in changes to frontline practice.  

“There is far too much reliance on the current outdated tests—both dipstick and culture—which miss many of these chronic infections, [and] as a result too many patients (mainly women and girls) are being told they have no infection and are sent away with painkillers, or in some cases are told they are imagining their symptoms,” says Andrew.

Getting a diagnosis for chronic UTIs is often difficult

This is something that rings true for me personally. Despite ten years' worth of visits to GPs, radiologists and urologists, I came across the condition not in a consultation room, but during a frantic bout of midnight Googling in my bathroom amid a flare-up last year. When I asked my doctor whether I could have it, I was dismissed, on the basis of my frequently negative tests. 

It’s no surprise then that recent research by Professor Harry Horsley shows that patients (disproportionately women) are waiting up to 12 years to receive a diagnosis—with no mention of chronic UTI in the government’s ten-year Women’s Health Strategy, published last year. CUTIC reached out to the strategy leader for comment on this and received no response. 

Technically, a recent update to clinical guidance means that women under 65 can be diagnosed with a UTI without a dipstick if they have two or more new key symptoms (out of a token list of three; itself an abridged version of the nine listed on the NHS website), but this revision does not apply to recurrent UTIs, let alone chronic symptoms or infections. 

In terms of medication, if you get an acute UTI, then prescribing guidelines suggest a three-day course of antibiotics for most adult women. This is despite such brief treatment having a failure rate of 25–35 per cent. In other words, it’s likely that three days isn’t always long enough to get rid of bad bacteria—leading infections to persist. 

Prescribing guidelines suggest a three-day course of antibiotics to treat an acute UTI

With this in mind, if you receive treatment for a routine UTI, make sure you discuss further antibiotics if an initial course doesn’t clear your symptoms. In the longer-term, campaigners and expert doctors are advocating for guideline alteration to permit courses that extend beyond three days to reduce the likelihood of an infection becoming chronic in the first place.   

If you think you might already have a chronic infection, specialist care is necessary and research suggests that patients need antibiotics for up to 383 days.   

Yet sadly, as Andrew notes: “Women are often dismissed by urologists when they insist they have an ongoing infection and refused a referral to a specialist chronic UTI centre.” Although self-advocacy is harder for marginalised groups, if you can, push for referral or a second opinion. In the meantime, organisations like CUTIC offer support and advice. 

At present, there is only one NHS funded unit managing chronic UTIs with this kind of long-term antibiotic treatment in the UK. Its three consultants typically prescribe twelve months of antibiotics to 1,600 active patients, but getting on the year-long waiting list requires referral from both a GP and NHS consultant. 

In my case, I’m still on the long road to getting diagnosed, but this is why I think it’s so important to talk about—precisely because getting diagnosed is so incredibly difficult. After countless courses of short-term antibiotics that never quite worked, my next appointment will be to discuss specialist referral.

Chronic UTIs may be a hidden epidemic, but the condition itself is as much of a problem as the chronic lack of understanding that’s leaving sufferers in the dark, and delaying their access to care.

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