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.
In 2008 America went to the doctor for a urinary tract infection (UTI). She was treated, but her infection came back after each course of treatment. This went on for several months. Her confused doctor referred her to a urologist, where she was diagnosed at the first appointment with interstitial cystitis (IC). For five years she was treated with a cocktail of medication to help manage her symptoms, but this did little more than take the edge of her pain and caused woeful side effects. America chanced upon information about a UTI specialist in the United Kingdom who specifically treats people like her who have been diagnosed with urinary syndromes and recurrent UTIs. America decided she had nothing to lose and set off across the Atlantic for a consultation. With the approval of her new doctor, she stopped her IC medication and started her new treatment. Ten months in, she claims to feel the best she has in 10 years. She still has some symptoms, but only rarely notices them. After a decade of pain, despair and depression, fighting off symptoms and dealing with significant medication side-effects, she now feels she can refocus on her work, her relationship with her husband and children and her future. America's thrilled to have her life back on track.
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.
Áine started experiencing recurrent urinary tract infections (UTIs) at the age of 12. As she grew older, her recurrent UTIs became more frequent. She always responded to antibiotic treatment, but sometimes she would need a repeat course to fully clear her symptoms. In her early 30s, she came down with UTI that didn't clear up with the usual treatment. After a year of suffering persistent and painful UTI symptoms, she was diagnosed with interstitial cystitis (IC) and advised to try and manage her symptoms through diet changes. Another year on, Áine discovered her diagnosis had been wrong and was diagnosed with a chronic UTI and endometriosis. After being prescribed appropriate antibiotic treatment targeting her embedded infection, and having a laparoscopic excision of the endometriosis, she fully recovered in 12 months.
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.
Alison was in her mid-20s when she was struck with her first UTI. A standard three-day antibiotic treatment cleared her symptoms, but they returned soon after ... and were much more serious. Unbeknown to her, Alison's bladder infection had ascended to her kidneys and had become life-threatening. With little forewarning, she was hospitalised numerous times with sudden acute attacks of pyelonephritis and sepsis. Each stint in hospital meant weeks of recovery time at home. Alison's mum knew it was not normal for a young, active woman to have become so suddenly vulnerable and seriously ill. Through a GP friend, she learnt about a UTI specialist in London and booked an appointment for her daughter immediately. Alison and her mother are both sharing their compelling story.