Challenging Decades of Defective Testing and Treatment for Chronic Urinary Tract Infection

Chronic cystitis, also known as chronic urinary tract infection (cUTI),is a persistent and debilitating disease that is estimated to affect around 500,000 people in the UK alone. Present diagnostic standards are admitted to be inadequate to cover the condition’s complexity.  Clinicians therefore have a limited understanding; all too commonly this results in misdiagnosis and inappropriate treatment.

We have established BladderAction to raise awareness of cUTI, to expose the scandal of the defective testing that is integrally linked to the condition, and to exert pressure on the authorities to develop dedicated, evidence-based testing and treatment guidelines.

Q:  Why do some people have all the symptoms of a bladder infection while their laboratory and dipstick tests consistently show negative?

A:   Substantive research has established that a negative test result still carries a 50 percent chance of a urinary tract infection (UTI).  Deficiencies in the standard urine laboratory culture have been reported for over 30 years; the inaccuracy of urinary test sticks used by GPs has been known for well over 10 years. Incredibly however, clinicians must abide by guidelines which insist that a UTI can only be diagnosed after a positive test result, disregarding patient symptoms. Inevitably, current testing is failing a large proportion of sufferers when these people should be automatically considered for assessment by a specialist in cUTI.

To learn more about cUTI, click here



Q:  How is cUTI diagnosed and treated?

A:  Currently there is no standard test to diagnose cUTI and no available treatment guidelines.  As at 2017, a diagnosis can only be made by a practitioner with specialist knowledge of cUTI, and will take into account the patient’s signs and symptoms, UTI history and the microscopy of an immediately fresh, unspun urine sample to identify leukocytes (white blood cells), epithelial cells (bladder wall cells) and other relatable signs of disease.  Once accurately diagnosed, the only available treatment for cUTI is long-term antibiotic therapy, which varies for each person while being closely monitored by a cUTI specialist.   Because of the widespread lack of awareness of cUTI, many people are not being referred to a cUTI specialist and are therefore denied appropriate diagnosis and treatment.

To learn more about cUTI symptoms, click here.


Q:  Why aren’t treatment guidelines available for cUTI?

A:  NICE (National Institute for Clinical Excellence) sets medical treatment protocols. It has admitted that its overall guidelines for UTI are inadequate, and that it has no guidance whatever for those who fail to respond to established UTI treatments. Contradictorily however, it continues to insist that these people be managed according to existing protocols. In ignoring peer-reviewed literature that details testing deficiencies, it admits failure on the one hand and reinforces the causes of that failure on the other.  Since cUTI is a largely unrecognised and poorly understood form of UTI, testing and treatment guidelines are non-existent.

To learn more about treatment and guidelines, click here

Too many people have told me that they have spent years reporting horrendous symptoms and suffering terrible pain, but that they have been dismissed and told that they do not have an infection because the culture was negative.” 
        Catherine West, MP Hornsey & Wood Green, Parliamentary Adjournment Debate, 2016.

“We basically have to relearn everything about the urinary tract because we were misled. Our beliefs were unfounded. We are now, with the new science, realising everything we were taught is probably wrong.”
Dr Paul Schreckenberger (1947–2016), Director of Clinical Microbiology and Professor of Pathology, Loyola University, Chicago, USA: American Soc of Microbiology, 2014.

“Many women with the appropriate symptoms are dismissed as not suffering from an infection when they do in fact have one. This controversial view is supported by much published literature. I am sorry to record this, because in doing so I identify a worrying deficiency in our diagnostic protocols, but the evidence is out there for everyone to read.”
Professor James Malone-Lee, Emeritus Professor of Nephrology, UCL, and Director of the LUTS Clinic at Whittington Hospital.