At just 21, Emma failed to fully respond to a course of antibiotics for a UTI. Once her treatment was finished, her symptoms returned. Negative tests eventually led her to being diagnosed with an incurable urinary condition 'interstitial cystitis', years of daily pain and the devastating loss of her baby boy at 21 weeks' gestation. Through the support of a grief counsellor, Emma gained the courage to advocate for her own health and she started to question her diagnosis. Now believing she had been misdiagnosed a decade ago, she urged her doctors to consider the possibility she could be suffering a chronic, embedded urinary tract infection (UTI). After further research, her doctors agreed and began treating her infection. Within months, her symptoms started to ease and she was pregnant again! Emma shares her bittersweet chronic UTI story here with the sincere hope it helps others like her.
Dr Nicky Thomas is a Senior Research Fellow at University of South Australia and The Basil Hetzel Institute for Translational Health Research, where he works on developing nanomedicines to treat infections that have become resistant to traditional antimicrobial therapies. Among other concerning and challenging chronic bacterial infections, Dr Thomas' team has an interest in improving the delivery and efficacy of antibiotics in people suffering chronic urinary tract infections (UTI).
Carrie had only ever had a urinary tract infection (UTI) once before. When she was 40, her second UTI refused to budge and her life soon became a revolving door of doctors and ER visits. Suffering terrible bladder and urethral pain and becoming increasingly unwell, she battled to hold herself together and manage her day-to-day life with three small children. Carrie knew her original infection had never fully cleared and it had become an infection like no other. She researched until came across a different form of testing and a doctor in the United States who was prepared to see past the negative culture tests and treat her for a chronic, embedded UTI. She is now close to being symptom-free and is back to living life as a happy, busy wife and mother. Read how Carrie fought her way back to good health.
Elle suffered chronic pelvic pain. By the time she was 25, investigations left her with diagnoses of irritable bowel syndrome (IBS), stage III endometriosis, general anxiety disorder and interstitial cystitis (IC). Even though she had never noticed bladder symptoms during this time, she was treated daily with Elmiron. Two years into her treatment, like a bolt from the blue she woke to crippling, stabbing bladder pain, abdominal pain, bladder burning and frequent, urgent urination. These symptoms never left and she had nowhere to turn. Since she was never convinced of her original IC diagnosis, she started to research other possibilities. Being in Canada, she was able to access a more sophisticated urine test and a practitioner who has a history of successfully treating patients with low grade, chronic bladder infections. After eight months of treatment targeting her infection, she says she is well on her way to being healed. You can read more of Elle’s story here.
At the age of 28, Angie has suffered post-coital urinary tract infections (UTIs) for her entire 20s. Following an investigative cystoscopy to find the cause, her situation took a dramatic turn for the worse. She went from suffering UTI symptoms only after sex, to suffering them constantly. Since dipsticks and cultures no longer showed the infection, she was petrified the diagnosis of an 'incurable urinary syndrome' was looming. Angie begged for a referral to a specialist UTI clinic in London for a second opinion where she was swiftly diagnosed with a chronic bladder infection. After five years of antibiotic treatment, Angie's life has much improved from her desperate earlier years, but her embedded infection remains stubborn and difficult to fully shift. Find out more about Angie's journey.
Mark’s bladder problems began when he was only four. By the time he was a young adult, an anatomical cause had been identified and surgically corrected, resulting in a new lifestyle of daily self-catherisation. This is when the constant UTIs began. For the next 14 years, Mark suffered intermittent and back-to-back UTIs, some testing positive, others not. He was treated with combinations of short-course and low-dose antibiotics, but his infection returned within days of completing each course. In his late 30s, Mark’s infection spread and he knew more of the same short-course, low-dose antibiotic treatments would never release him from the ongoing cycle of pain and suffering. He knew it was time to search for a doctor who was prepared to treat his embedded UTI differently. Read more about Mark’s incredible journey.
When Jean started having 'women's issues' after menopause, she had no idea a UTI would send her health into such decline. Repeat negative UTI tests misled her doctors into thinking there was no infection and she was prescribed antidepressants to deal with her growing state of panic. In a determined effort to find better answers, she was relieved to be diagnosed with a chronic UTI and was immediately started on treatment. She soon discovered a combination of a urinary antiseptic and Chinese herbal medicine was her answer. Jean is convinced chronic UTI is a multi-faceted condition that requires an approach to heal the body, mind and soul. Read more about how Jean healed her chronic UTI and reclaimed her life.
While on summer holidays, a simple UTI was the start of a horrid year of illness, pain and anxiety for British woman, Clare. Short-courses of antibiotics quickly cleared her UTI symptoms, but they returned each time. Repeat dipsticks and culture tests confused her doctors because they were unable to confirm an infection was present. Being a nurse practitioner and understanding her symptoms and her own body, she knew an infection was what she was dealing with. Clare was referred through the healthcare system, had the usual tests and was offered many of the standard treatments for managing her symptoms. Before embarking on this route, she found a specialist with the expert knowledge to diagnose her condition and treat the infection that had become embedded in her bladder. This is Clare's story.
To be diagnosed with a chronic UTI in Australia is no mean feat. Chronic UTI is a largely unrecognised and misunderstood condition. It is common for people with these chronic infections (who are predominantly women) to be referred through the medical system—sometimes for years and even decades. They see numerous specialists and have multiple tests, often walking away with a urinary syndrome diagnosis. Ongoing symptoms and pain management is usually the best that can be offered. For these people, the future can be bleak. This month we talk to five Australian women who have long-suffering UTI histories of between one and 35 years. Through their perseverance, each of these women found their way off the medical merry-go-round and were finally diagnosed and properly treated for a chronic UTI. Read more to find out how they reclaimed their lives and found their way back to health.