My name is Leah, I am 36 years old and have suffered from a Chronic UTI for over four years, this means I have constant UTI symptoms daily. My UTI became chronic when bacteria in my urine embedded itself into the lining of my bladder wall where antibiotics and my immune cells cannot easily reach them. This causes constant inflammation in the bladder. The bacteria can get into biofilms and intracellular reservoirs inside my bladder lining, where it can become unsusceptible to antibiotic attack.
Prior to my infection turning chronic, I had recurrent UTIs from 2016. Following sex, I would get an acute UTI, I would be given a 3-day course of antibiotics and it would appear to clear but then return. In 2017, to help manage the recurrent UTIs I was given low-dose prophylactic antibiotics post-sex. I thought at the time it was working, my infections appeared to be in remission, however, all it was doing was keeping symptoms at bay while it embedded itself deep in my bladder. What didn’t kill the infection made it stronger. In 2019 the prophylactic antibiotic stopped working, UTI symptoms erupted and my life changed dramatically overnight. Short courses of antibiotics did not clear the infection.
The symptoms are debilitating, I’ve spent the last four years in significant pain and in fear. My symptoms include pain and burning in the bladder itself, spreading to the wider pelvic area. I have had times when it is hard to walk or stand up. I was plagued with urethral symptoms with increased urinary frequency including at night, agonising burn when urinating, fluctuation from extreme urgency to extreme retention and I felt like my bladder was never empty. My symptoms are aggravated by sitting, stress, any exercise, sex, certain foods and hormonal changes during my menstrual cycle.
The impact on my life has been horrific. I had to stop all sports and exercise, limit sitting for long periods, and getting out of the house became difficult. Early on I couldn’t work, I had over ten months off sick initially. I eventually returned to working from home with a standing desk, although have had to have prolonged periods away from work since. My career stagnated, and life really turned on its head. Plans for trying for pregnancy and moving to the USA to live with my husband were put on hold.
Let down by mainstream NHS services I was forced to fund my treatment privately at Harley Street, under the late Professor James Malone-Lee. There was a long waitlist for the only NHS clinic in the country at the Whittington Hospital. The clinics have saved my life, they have allowed me to live rather than exist. I am no longer housebound. I was put on long-term full-dose antibiotics as well as Hiprex. I have now taken the antibiotics for four years and slowly but surely, I am seeing improvement, I am regaining my life back, dogged persistence is needed. I feel lucky I have been able to both access the service and that my body has tolerated the antibiotics for this long. The majority of patients who access the service are in treatment for 384 days before recovering, however, around 10% of patients have to be on antibiotics much longer. While referral to tertiary care can improve diagnosis and treatment, access to this service in the NHS is extremely limited and with a rising number of people desperately needing support, my hope is that additional funding will go into service.
Despite being in treatment I still experience life-changing symptoms. The mental toll of suffering from the condition for four years is huge. While I can engage in life much more than previously, the condition still impacts my life severely. I get side effects; four years of full-dose antibiotics have started to impact my body. I feel tired, I nearly always have thrush, I get achy joints and my microbiome in the gut is significantly affected. C Diff colonisation has made me feel very anxious about whether I will be able to continue with antibiotics longer term and if not, what sort of life I will live then. Following Covid-19 last summer, despite being on full-dose antibiotics my infection went haywire, I needed IV antibiotics to get it back under control. The experience left me feeling traumatised and fragile. Along with thousands of other patients, many of whom are in far worse situations than me, I am desperate for other alternative treatments to become available. We want our lives back.
In 2022 NHS England acknowledged the existence of Chronic UTI and recently NICE have followed suit, noting the difficulties patient face with the condition, including the impact on our mental health. They identified that acute UTI, recurrent UTI and chronic UTI are experienced differently by patients, and will likely need different testing solutions, and the hope is that the Department of Health and Social Care will listen and ensure policy reflects this. For patients, however, acceptance is not enough, Chronic UTI guidelines need to be produced and this should be considered as a matter of urgency by NICE and the Department of Health. We hope that NIHR will put forward funding to study Chronic UTI.
In 2023 NICE finally accepted that dipsticks often miss infection and a risk that inadequate testing can cause harm to the patient and misdiagnosis. This was the first time NICE has admitted that the standard culture does not detect all types of bacteria and that a UTI can be caused by more than a single causative pathogen, raising questions over the Kass Criteria. For improved care and treatment, we need acceptance of this by the wider medical community and research into better testing alternatives.
I am amongst thousands of patients who feel failed by 3-day prescribing for acute UTIs. The vast majority of us feel certain that if we had been given a long enough course with the onset of our first UTI, we wouldn’t have lost years of our lives to this horrendous condition.
Please note, opinions expressed within this article are solely the author’s and do not necessarily reflect the opinions and beliefs of the Society.