Chronic UTI patients have demanded more treatment options, as sufferers who cannot tolerate antibiotics say they have been left feeling like their “lives were over”.
Campaigners Caroline Sampson and Sarah Heaton – who have both previously shared their stories with i – told a landmark conference about the realities of living with a debilitating chronic condition.
They shared their shocking experiences with an auditorium full of nurses, doctors and scientists at the first conference dedicated entirely towards chronic urinary tract infections (UTIs).
Ms Sampson said long-term antibiotics eased her bladder pain, but she was unlucky enough to suffer side effects so had to come off the medication, leaving her with “no single treatment left”.
And Ms Heaton said her life “imploded” when a UTI became chronic in 2021, with the “relentless agony” leaving her housebound.
She came off long-term antibiotics after suffering from gut problems and systemic thrush and now manages her condition with Hiprex, which acts as a “urinary antiseptic”.
Chronic UTI, which often begins as an acute bout of cystitis, can occur when bacteria become embedded within the bladder wall, becoming difficult to treat with short courses of antibiotics.
Patients can be treated with long-term narrow-spectrum courses of antibiotics at a limited number of specialist centres in England, including just one NHS clinic in London.
The treatment can last for over a year until the infection is cleared.
But some patients struggle to tolerate the antibiotics, with commonly reported side effects including “skin rash, gastrointestinal disturbance and vaginal symptoms”, according to a 2017 study in the British Medical Journal.
The event – Living with Chronic and Complex UTIs – was hosted by Antibiotic Research UK on Thursday 21 March at the Wellcome Collection in London, and included talks by leading specialists and cutting-edge scientists.
New diagnostic tests and treatments are in the works – but they require more funding to gather clinical trial data to be rolled across the NHS, meaning it could be years before they become widely available.
One of these treatment options is bacteriophage, which is a type of virus that destroys bacteria and could be used as an alternative to antibiotics.
There are currently insufficient randomised control trials showing success in the usage of phage therapy for the treatment of UTIs.
However, Dr Melissa Haines is developing the use of phage therapy within the Leicester Centre for Phage Research for the treatment of antibiotic-resistant UTIs caused by E.Coli and Klebsiella.
She said: “There are other countries that are doing UTI phage work in different capacities. I was looking at reducing recurrent UTIs as it’s a women’s health issue that has been abandoned for a long time.”
She said she could envision the therapy being used on chronic patients who are harder to treat with antibiotics, including because of allergies.
“I think antibiotics still have their place. And as a clinician, I can’t see that ever getting wiped out. But what I think we need to have extra options for those patients who have limited antibiotic choices either because of allergies, intolerances or because they’ve got antibiotic-resistant organisms.
“We need to do more to help those patients and that’s what my research is about.”
However, she said the use of phages in the NHS was “a long way off”, as the research requires funding for clinical trials, and then it needs to be licensed for approval in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA).
‘I’d be a guinea pig for any new treatment’
Patient campaigners told i they would be “guinea pigs” for any new non-antibiotic treatment options for chronic UTI.
Caroline Sampson, who cannot tolerate long-term antibiotics, said the development of phage treatment is “really exciting” but that it needs to be administered in a “controlled environment”.
“I would go on a train to Leicester tomorrow and offer to be a guinea pig,” she said.
Ms Sampson said that before she developed a chronic UTI her life was “thrilling and stimulating”, but now she lives in a “constant state of anxiety”.
She finds herself in “mental anguish”, and said: “I need an outlet to grieve for the life that I’ve lost and the pain I’m in 24/7.
“I had to give up my lovely job – I can’t get there, I can’t sit, I can’t drive, I can’t go to the theatre. Life has completely shrunk and my husband’s life has had to shrink to fit mine.”
She added that it was “frustrating” that there was “no single treatment” left for her to try as she is very sensitive to medicines.
“The carpet has been ripped from under my feet,” she said.
Professor Jennifer Rohn, an expert in renal medicine at University College London, told the conference that chronic UTIs were “hard to diagnose and even harder to treat” and progressing the field of research requires “lots of time and money”.
She told the packed auditorium: “If I were God, I would develop better diagnostic tests so that we can actually get an accurate snapshot about the rates of undiagnosed infections.
“We need different treatments, better therapies and preventions. In the meantime, we need more knowledge about how to deploy the antibiotics that we have to prevent recurring and chronic UTI.”
Dr Cat Anderson, an expert in treating chronic infections who runs a private UTI clinic, said recurrent and chronic UTIs were “common and complex”.
She told the conference: “There are treatment options available but there is a paucity of evidence-based medicine – we need more. There is a need for more recognition, more understanding, better diagnostics, better guidance.
“We need further research studies. We need money invested in the research to aid diagnostic and treatment challenges.”
Some patients can develop an antibiotic-resistant urinary tract infection (UTI) which can become chronic, according to Antibiotic Research UK.
Concern over antimicrobial resistance has grown in recent years, with a 2019 report by the World Health Organization (WHO) saying drug-resistant diseases already cause at least 700,000 deaths globally a year.
The report estimated that the figure could increase to 10 million deaths globally per year by 2050 if no action is taken to contain antimicrobial resistance.
What health bosses have said about chronic UTIs
A Department of Health and Social Care spokesperson said: “We understand how deliberating chronic and recurring urinary tract infection (UTIs) can be. That is why, through the NHS’s UTI reduction workstream, we are helping improve the treatment of UTIs, as well as enhancing prevention and supporting early and accurate diagnosis.
“This includes working with partners to identify treatments, including a new study into preventing recurrent UTIs in women.”
The National Institute for Health and Care Excellence (NICE) said: “NICE has produced a comprehensive suite of guidance and advice on the diagnosis and management of UTIs and published detailed antimicrobial prescribing guidelines on lower UTIs which include the recommended antimicrobial drug, dose, duration, and route of administration.
“It sets out useful and usable for health professionals to improve the diagnosis and management of UTIs in both women and men. Our updated quality standard on UTIs in adults includes statements on the duration of antibiotic treatment and referral for recurrent UTIs.
“We take into account the best available evidence, and we are committed to reviewing our guidelines and making changes when new evidence becomes available.”
NICE added that in May last year ity published “an early value assessment on point-of-care tests for urinary tract infections to improve antimicrobial prescribing.
“The need for further research on symptoms and signs of long-term (chronic) UTIs was included in the recommendations.
“The committee concluded that more data on test accuracy, including how well they identify bacteria and antibiotic susceptibility, is needed, and that it would be beneficial to see data comparing the new point-of-care tests with dipstick testing in the same population.
“The committee also said it would like to see more data on how the new point-of-care tests affect decisions about antibiotic prescribing and antibiotic use.
“Clinical experts noted the importance of reporting the specific antibiotics used to help understand how the tests affect prescribing behaviour and antimicrobial resistance.
“We have also published a visual summaries on the prescription of antibiotics for UTIs. In addition, we have published patient decision aids to help women and their healthcare professionals discuss the options for reducing the chance of recurrent UTIs in postmenopausal women and in premenopausal women.
“We have also published a patient decision aid to help women with cystitis understand antibiotic treatment options”
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