Australia has no such specialist clinic diagnosing and treating chronic UTI, or the clinicians with specialist knowledge or training in this type of complex infection. The usual route for someone in Australia with Chronic UTI symptoms is a referral to an urologist, who then will perform a series of invasive and non-invasive tests to exclude possible causes for the ongoing LUTS experienced. This involves urodynamic testing such as ultrasounds, CT and MRI scans, a cystoscopy with or without bladder hydrodistension (stretching), urethral stretching and/or a bladder biopsy. Once obvious causes are excluded, the patient will usually be labelled with an incurable ‘urinary syndrome’ that describes their symptoms, such as interstitial cystitis (IC), painful bladder syndrome (PBS), overactive bladder (OAB), chronic pelvic pain disorder/syndrome, urogenital syndrome and chronic bladder pain syndrome.
On average, it takes three to seven years and three to five different practitioners before an IC diagnosis is made. It is hard to ascertain how many Australians suffer from a ‘urinary syndrome’. Some estimates quote there are 65,000 people in Australia with IC/PBS, with 90 percent being female. Others estimate three to six percent of Australian women have IC/PBS, so that is between 300,000 and 600,000 women alone. There is a stark difference between those figures, which proves how inconsistent and confusing this diagnosis is. It is important to understand that being labelled with an incurable ‘urinary syndrome’ does not diagnose the cause of the symptoms—it merely acknowledges you have them.
Various accepted pharmacological and surgical treatments are offered with the aim of attempting to manage symptoms. Most of these treatments have unpleasant side effects and low success rates. Many patients report these treatments worsen their symptoms. In Australia, the mainstream treatments offered could include: hydro-distension to stretch the bladder, anti-histamines to reduce inflammation, amitriptyline/nortriptyline for pain, Elmiron designed to restore the bladder lining, also known as the glycosaminoglycan (GAG) layer, Gabapentin to modify pain, DMSO (a chemical solvent), heparin, steroid bladder instils, hyaluronic acid and chondroitin sulphate instils (iAluRil) and Chlorpactin bladder rinses. Surgical treatments are offered for worst case scenarios and include: sacral neuromodulation to block nerves, urinary diversion and/or bladder removal (cystectomy) with a bag to collect urine outside the body, or bladder reconstruction using part of the bowel to form a larger bladder for those with reduced capacity and extreme frequency.
None of the accepted mainstream treatments for those with a diagnosed ‘urinary syndrome’ are targeted at addressing the cause of the symptoms. They are mostly invasive, expensive, on-going, highly questionable and the side-effects are often extreme, intolerable and/or life-changing. This is far from being an acceptable situation for those with LUTS, who could in fact have an undiagnosed and treatable Chronic UTI.
Some important notes on ‘urinary syndromes’: