Current controversies that adversely affect interstitial cystitis patients

Abstract

Interstitial cystitis (IC) remains a diagnosis of exclusion, based on the symptoms of urinary urgency, frequency, and pelvic pain in the absence of other definable causes. Certain areas of controversy in the field of IC research have a significant adverse affect on patients. Many physicians still do not believe that IC exists, or else believe that it is a rare postmenopausal condition. This can cause significant delays in diagnosis and treatment. It is particularly problematic in children, whose symptoms are often diagnosed as “voiding dysfunction” and are thought to be self-limiting. It can also be problematic for men, who are often unsuccessfully treated for prostatitis over the course of many years, and for whom the diagnosis of IC is never entertained. In some cases, when no diagnosis is made, patients are left to live with severe, debilitating symptoms and have nowhere to turn for help. Resistance to treating severe nonmalignant pain with opioid medication further compounds this problem and has led to suicide in this patient population. The “gold standard” of cystoscopy with hydrodistention is now being questioned, and an overreliance on the potassium test, which has a high false-negative rate, may lead to significant underdiagnosis of IC. New urinary markers hold promise for both diagnostic as well as therapeutic potential, but are not yet commercially available. IC may be an organ-specific disease in some patients and a systemic condition in others. Many patients have multiple disorders and have no physician to manage their overall health. The Interstitial Cystitis Association believes that the best way to address these unresolved areas of knowledge is to: (1) educate patients on all available diagnostic and therapeutic options so that patients, with the help of their physicians, can make the best informed decisions possible, and (2) aggressively pursue all avenues of research, particularly epidemiology.