Women in the UK with chronic urinary tract infections (UTIs) are facing a double whammy of long-term physical suffering alongside mental health problems because of medical misogyny, openDemocracy has found.

Sufferers we spoke to reported developing anxiety and post-traumatic stress disorder as a direct result of gaslighting, misdiagnosis and delays to care.

Although short-lived acute or routine UTIs are incredibly common – globally, 404 million people are reported to have experienced an infection in 2019 – long-lasting chronic infections are poorly understood. The NHS only included reference to chronic UTIs on its website last year, following a patient-led campaign.

Women are three times more likely than men to get a routine infection and UTIs are often wrongly dismissed as a trivial ‘women’s condition’. Experts also say current diagnostic methods are flawed: new research has revealed that some women have waited up to 12 years for a correct diagnosis of chronic infection.

Phoebe Allen, 29, is one of those women. She spent ten years seeking NHS treatment, and was forced to go private to obtain a diagnosis of chronic UTI after doctors repeatedly told her she did not have an infection.

“It was so frustrating,” she says. “I now have paranoia and anxiety because of how I’ve been treated. Even now, when I contact the GP for anything, I feel like I have to write down what I need to say, and make my symptoms seem ten times worse than they actually are to be taken seriously.”

Institutional blindness

Urogynaecology consultant Rajvinder Khasriya works at the Whittington Hospital’s LUTS Service in north London – the only NHS treatment centre in the UK to offer non-standard care for chronic UTIs.

She told openDemocracy that although more than 50% of women will get a UTI, and 44% of this group will have a recurrence, it’s not yet known why the condition becomes chronic in some individuals and not others.

“There is a wider issue here, which is about access to healthcare for women, and the barriers they face,” Khasriya says. “There are a lot of unanswered questions about what’s causing this problem, and that’s why the research and science has to go on.”

Ordinary cases are caused by bacteria entering the urethra (the tube through which urine leaves the body), commonly after sex. The shift from acute to chronic infection is thought to occur when previously free-floating pathogens invade the cells lining the bladder. Once embedded, they are difficult to pick up with traditional tests and can be resistant to antibiotics.

Experts suspect this might happen when the short courses of antibiotics prescribed in routine cases (which typically last three to five days) fail to kill off sufficient numbers of bad bacteria, leaving some to become embedded in the body.

The Chronic Urinary Tract Infection Campaign (CUTIC), which is campaigning to improve diagnosis and treatment methods, says that women’s pathological urinary symptoms are frequently dismissed as normal.

Catriona Anderson, a GP with expertise in chronic UTIs and microbiology, and founder of the private UTI Clinic in London, agrees, describing institutional blindness to the condition as shocking.

“The truth is, it’s not a well-recognised disease and it’s not got good diagnostic technologies. We are completely failing to recognise chronic UTI,” she says.

These failings are underpinned by a “cultural normalisation of female pain”, says Khasriya.

Although women are more susceptible than men because they have a shorter urethra, Anderson says this does not explain the gendered disparity in attitudes to treatment.

When men develop prostatitis (a complication of UTIs), they are frequently prescribed longer courses of antibiotics, Anderson explains.

“I can’t believe the amount of treatment that’s thrown at [men] without any tests. Women can present with symptoms of UTI, and be told it’s all in their head when the test shows negative. A bloke can be given six weeks of antibiotics without any tests. That’s the difference – and I’ve seen that,” Anderson says.

Guidelines produced by the National Institute for Health and Care Excellence (NICE) require a positive dipstick and midstream urine culture to diagnose and treat most UTIs. Despite being the ‘gold standard’ in frontline NHS practice, they are considered outdated by experts such as Khasriya.

Originally developed to monitor kidney infections, these routine diagnostics were never designed for UTIs; according to CUTIC, dipsticks miss up to 60% of all chronic infections, while midstream cultures can miss up to 90%. Allen remembers receiving only one or two positive tests during a decade’s worth of GP visits, despite having had an infection for years.

However, Anderson recognises that GPs are in a kind of catch-22 when it comes to chronic UTIs. “Doctors aren’t ignoring something they can see – they simply cannot see it,” she says.

In the absence of positive tests, sufferers are frequently told they don’t have an infection and are turned away with painkillers. Caitlin Daly, operations lead for women’s services at the Whittington, says this kind of gaslighting occurs “all the time” for women with chronic conditions.

Outdated guidance and treatment

The NHS may now formally recognise chronic UTIs, but this has not resulted in updated guidance, undermining the supposedly revised approach. “Doctors are having to rely on the guidelines for acute or recurrent UTIs. These are not appropriate and fail most patients,” said CUTIC spokesperson Carolyn Andrew.

Although there is consensus among chronic UTI experts that long-term antibiotics are essential for successful treatment, NICE guidelines prevent NHS doctors from making these kinds of prescriptions, particularly when traditional tests are negative.

When Anderson prescribed non-guideline antibiotics for certain patients at her specialist clinic, her pharmacist manager threatened to report her to the General Medical Council. The episode scared her so much that she shut the clinic for two years. “It took me a while to regain my confidence, but now I’m backed by so many leading urologists,” she says.

Allen first came across the term ‘chronic UTI’ not in a consultation room, but while trawling the internet on her mum’s sofa. Despite telling doctors she knew she had an infection, they refused to diagnose her without a positive test. Coming across the disease online was revelatory.

“That was it,” she said. “I didn’t care what anyone else said. It literally described me. It was a lightbulb moment.” Soon after, she booked an appointment at a private clinic on London’s Harley Street, was diagnosed and prescribed treatment.

Anderson – whose own private clinic currently has a one-year waiting list – says she constantly reminds practitioners to listen to their patients.

She recalls saying at a recent event: “Please stop asking your patients: ‘Are you sure it’s your bladder? Are you sure it’s not irritable bowel syndrome? Are you sure it’s not period pain?’ A woman knows the difference between gut ache, period pain and bladder pain.”

For Allen, this kind of disbelief is all too familiar. Faced with repeated negative tests, GPs questioned her mental health and at points implied the problem was psychological.

A different approach

The Whittington’s LUTS Service takes a different approach to testing, diagnosis and treatment. Doctors don’t just look at bacteria, they also measure immune response by monitoring white blood cells in the urine. On average, sufferers are prescribed 12 months of full-dose antibiotics.

Sadly, the waiting list for the clinic is “very long” (at least eight months) and getting on it in the first place is no mean feat. Patients need a referral from a GP to a urology consultant, and another from that consultant to the clinic.

With symptoms including an incessant need to urinate, pelvic pain and burning sensations, those that do make it to LUTS are desperate, says Khasriya. “It’s not unusual for us to have patients with PTSD, from the trauma they have suffered with regards to physically having a problem and being in pain, but also from not having access to care and being dismissed.

“We had a patient who walked into the clinic and said: ‘I know there’s a waiting list – I don’t want to jump the queue, but I want to kill myself’. That’s how intrusive symptoms are,” she explains.

In recognition of the psychological trauma associated with lengthy journeys to diagnosis, the clinic routinely measures patients’ anxiety and depression scores.

Although Daly and Khasriya would like the Whittington approach to be expanded, this requires further studies on the efficacy of its treatment. “I’ve been fighting to get funding to do that since I’ve been a consultant – so for five years,” says Khasriya. “If we can’t get funding, [the treatment] will never be accepted by NICE.”

Like other sufferers, Allen has taken matters into her own hands and actively campaigns for change through her work with Chronic UTI Global Support, an advocacy group that she co-founded with the goal of pushing for reform of NICE guidelines

For Khasriya, “the single most important effort that’s pushed this agenda forward is the patients.” It’s women who are disproportionately afflicted, but their collective advocacy is also essential to the solution.

Phoebe Allen can be found on Instagram at @chronic_utiawareness