In the summer of 2020, 20-year-old Beth was a student, working part-time at her local garden centre. She had had urinary tract infections (UTIs) on and off since she was 15. When cranberry-flavoured cystitis relief sachets failed to alleviate her symptoms she’d go to her GP, who would prescribe three days’ worth of antibiotics. A UTI is an infection of the kidneys, urethra, bladder or ureters. Around one in every two women will get a UTI at some point in their life (current studies don’t account for trans and non-binary people with gynaecological systems). For most people it will be short-lived and easily cleared up with a brief course of antibiotics. But for the unlucky, like Beth, the infection and symptoms persist or recur for months, years or even decades.
Beth was getting infections more and more frequently and the antibiotics had stopped working. Her doctor was sympathetic but there was little he could do. Beth had been told by other healthcare professionals that her condition was a consequence of being a woman, something to put up with.
In June 2020, things changed. Beth woke in intense pain. Pain in her pelvis, down the tops of her legs, down her back. It was agony, accompanied by “lots of burning and lots of urethral symptoms”. It was the middle of the pandemic but she went straight to A&E where they found nothing wrong. She was referred to urology and gynaecology, and sent home to take painkillers.
Beth’s symptoms became unbearable. She had to give up work and take time out of studying. She was bedbound with the pain and her mum became her carer. “I was literally not functioning and I couldn’t leave the house. The mental side of it was also really scary, I had never experienced something like that before.” She was in intense physical pain, lonely, frightened and disillusioned. “You go to health professionals and you assume they’re going to help you – but I felt like no one really cared enough.”
Over and over again, Beth went to her GP. Every time he tested her urine and found no evidence of infection. “I just felt dismissed every time. It made me doubt myself, too: was it all in my head?” For the rest of the year Beth lived in constant pain, without any explanation or treatment. Eventually a chance encounter on Instagram gave her some answers. She came across the page of a woman living with a chronic UTI. “It was the first time I’d even heard the term, and the first time I didn’t feel alone anymore.” Finally, Beth had a name for her condition.
You go to health professionals and you assume they’re going to help you – but I felt like no one really cared enough.
Beth
Beth’s story is extreme but not unique. According to Dr Catriona Anderson, GP, microbiologist and specialist in UTIs, almost 1 million women in the UK live with a chronic UTI. Beth’s experience of being dismissed by her doctors is also not unusual. After going to A&E with intense UTI symptoms, 20-year-old Anna, a medical student in Glasgow, says she “just felt like an idiot”. She adds: “A lot of these male doctors have never had a UTI, they don’t understand.” Twenty-six-year-old Hazel from Brighton says she was “treated like a child” when she went to the doctor with her symptoms. Being constantly told that your pain and discomfort is all in your head takes its toll on your mental health. “I feel like I’ve lost a lot of faith in doctors,” says 26-year-old Emma from Essex. “They made me feel like I was going crazy.” Dr Anderson says that many of her chronic UTI patients have come to her after attempting suicide.
Chronic UTIs are poorly understood by the British medical profession. The standard tests that the NHS performs on urine samples are based on a small study of pregnant women with acute kidney infections, conducted in 1957 by the scientist Edward Kass. The study involved just 88 women and Kass himself did not think it was an appropriate test for other types of UTI in other types of patients.
In other words, current testing of patients with chronic UTI symptoms is insufficiently sensitive to pick up many infections. This means that patients are frequently told that there’s nothing wrong or sent away with a diagnosis of interstitial cystitis (IC) or bladder pain syndrome. These are chronic, incurable diseases with no known cause. However, says Dr Anderson: “Over 90% of women who come to me with a diagnosis of IC or bladder pain actually have infections – they have chronic UTIs that the tests haven’t picked up.”
Chronic UTIs can be treated and, in many cases, prevented. National Institute for Health and Care Excellence (NICE) guidelines for UTI care advise three days of antibiotics for acute infections. This course of treatment proves effective for many people but for many others – like Beth, Hazel, Anna and Emma – it doesn’t. In such cases it can be incredibly difficult to persuade your doctor that the tests they perform might not be accurate, or that you need a longer course of antibiotics.
Part of the problem is misogyny. Dr Anderson compares the treatment of chronic UTIs to that of endometriosis and says that all too often her doctor colleagues are “far too quick to label women as hysterical or in need of psychiatric care rather than fully investigate”. There is not enough research into chronic UTIs specifically and women’s health problems more generally. Doctors are constrained by NICE guidelines for the diagnosis and treatment of diseases and, at present, these guidelines don’t even mention chronic UTIs.
Dr Anderson says that “proper clinical diagnostic criteria” is needed if doctors are to treat chronic UTIs adequately and campaign group CUTIC is currently pushing for NICE to update its guidelines. One of CUTIC’s founders/directors, Carolyn Andrew, is optimistic. The government’s recently published Women’s Health Strategy only contains a brief mention of “recurrent” UTIs but Carolyn hopes that chronic UTIs may be added in the future. Earlier this year, the term “chronic UTI” appeared for the first time on the NHS website.
Until things change, many people living with chronic UTIs find their information from social media and have to seek private care. In March 2020, Hazel’s condition got “much, much worse”. She had, and continues to have, UTI symptoms “all day, every single day”. She says that her GP told her there was nothing they could do and that this was “just what [her] life was going to be like”.
Hazel finally came across a website called Live UTI Free, which referenced the names of Harley Street specialists. She made an appointment and had an initial consultation. “They were so kind, listened to everything, took everything seriously – so different to my GPs.” She’s now been in treatment with a private doctor since January 2021, on a long course of antibiotics and Hiprex, a newly developed and promising antiseptic treatment for UTIs. She is, she says, “much, much, much better than before”. Grace, 25, sidesteps her GP entirely and buys her antibiotics online. But not everyone can afford private treatment. Imogen, 24, has considered private care but it’s simply too expensive.
Even those who can afford private treatment for their chronic UTIs shouldn’t have to pay. This is a condition that causes debilitating, constant pain for over 1 million women in the UK and it is poorly understood. As Dr Anderson says: “This is a place where the NHS fails its patients.” Yet there is hope. Social media provides many sufferers with support and a sense of community. Innovative treatments are being developed. More awareness is being raised. People living with chronic UTIs deserve more – and they aren’t even asking for much. For sufferer Becca, all she wants is a “nice life, to enjoy food and a nice little walk. I just want to get better, back to my normal self.”
If you are struggling with a chronic or recurrent UTI there is information and support available. Bladder Health UK, CUTIC and Live UTI Free provide resources for patients and there are multiple support groups on Facebook, including Chronic UTI Women’s Support Group and Embedded/Chronic UTI Support Group.
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