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Bladder pain syndrome/Interstitial cystitis

The Urological Society of Australia and New Zealand (USANZ) describes the primary symptoms of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) as including pain (of the lower urinary tract, bladder, pelvis, abdomen, vagina, prostate, scrotum, penis), urinary urgency, and urinary frequency. IC/PBS has long been described as a ‘diagnosis of exclusion’. This means it is a diagnosis given when all possible causes of ongoing LUTS have been explored and excluded, including and most especially, infection. Unfortunately, commonly used UTI tests (dipsticks and urine cultures) are incapable of excluding infection. And therefore it can be very difficult to distinguish interstitial cystitis and chronic UTIs. In some case the chronic infections could be an underlying cause. 

Interstitial cystitis/Bladder pain syndrome is considered an incurable, and sometimes progressive, condition.  Various accepted pharmacological and surgical treatments are offered with the aim of attempting to manage symptoms. 

Treatments for Bladder Pain Syndrome/Intersitial Cystitis

In Australia, the mainstream treatments offered regularly include: dietary changes (to avoid triggers), pelvic floor physiotherapy, anti-histamines to reduce inflammation, fulguration, Amitriptyline/Nortriptyline for pain, Elmiron designed to restore the bladder lining—also known as the glycosaminoglycan (GAG) layer—(long term Elmiron use is now understood to be toxic to the retina and cause eye damage), Gabapentin to modify pain, DMSO (Dimethyl Sulfoxide, a chemical solvent), heparin, steroid bladder instillations, hyaluronic acid and chondroitin sulphate instillations (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.