IC Fact Sheet

What is it: Interstitial cystitis is a pelvic pain condition with an unknown etiology. Patients typically experience “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder” that lasts longer than six weeks in the absence of infection or other identifiable causes. Some patients have large, bleeding ulcers in their bladders, known as “Hunner’s Ulcers.” Others may have more modest bladder wall irritation and inflammation. Some have no bladder wall damage yet still have severe bladder symptoms. IC patients often struggle with coexisting medical conditions such as pelvic floor dysfunction, vulvodynia, prostatodynia, irritable bowel syndrome, anxiety disorder and others.

Names: This syndrome is called by a variety of names, including:

• interstitial cystitis (IC) – commonly used throughout the world
• bladder pain syndrome (BPS) – primarily in Europe
• hypersensitive bladder syndrome (HBS) – primarily in Japan
• urologic chronic pelvic pain syndrome (UCPPS) – in research studies
• chronic pelvic pain syndrome (CPPS)
• ketamine cystitis – refers to patients who are using ketamine

Symptoms: The symptoms can vary greatly between individuals and even for the same person throughout the month, including:

• urinary frequency – as often as every 10 minutes or a total of 60 times a day
• urgency – sudden, unpredictable moments when they desperately need to empty their bladder
• pressure – an uncomfortable feeling of heaviness or fullness in the bladder
• pelvic or bladder pain – mild tenderness to intense, agonizing pain. Pain typically worsens as the bladder fills with urine and is then relieved after urination. Pain may also radiate to the lower back, upper legs, vulva and penis.

Epidemiology: In 2009, the RAND Interstitial Cystitis Epidemiology (RICE) study provided astonishing new data on the prevalence of IC in the USA. This National Institutes of Health funded study estimated that 3.4 to 7.8 million women in the USA have symptoms of interstitial cystitis, much higher than was previously thought. Approximately 1 to 4 million men appear to have IC though the true rate has yet to be determined because men are often diagnosed chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) instead. IC can occur in children, teens, young adults and the elderly.

Causes: The cause of IC remains a mystery. Researchers at the University of Maryland discovered a protein in the urine of IC patients, the antiproliferative factor (APF), which appears to block the normal growth of the cells that line the inside wall of the bladder. Thus, it may take longer for an IC patient to heal when their bladder is injured or irritated. Researchers are also exploring the role of heredity in IC. In some cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families. Research released in Summer 2010 suggests that IC could be a neurological dysfunction, known as a “gating” or “neurosensitivity” disorder.
Diagnosis: It’s not unusual for patients to have seen five or more physicians as they seek medical treatment. A diagnosis of IC/BPS is based on clinical symptoms, including the presence of pain (usually occurring as the bladder fills with urine), frequency and/or urgency. A wide variety of tests are usually performed to rule out other conditions as well as to determine the integrity and health of the bladder wall.

The diagnosis of IC can be made confusing because of the wide variety of names that are often used to describe the symptoms above. It’s not unusual for IC patients to have been misdiagnosed with cystitis, bacterial cystitis, overactive bladder, urethral syndrome, trigonitis, urethritis or a “sensitive” bladder before they receive a correct diagnosis. Men are often mislabelled as prostatitis patients.

Treatments: Most clinicians utilize a multi-modal approach to therapy, including both self-help strategies and a variety of treatments to help manage symptoms, including:

• Bladder Coatings: Elmiron
• Antidepressants: Elavil, Imiprimine
• Antihistamines: Atarax, Vistaril
• Antispasmodics: Ditropan, Levsin, Urispas, Urised
• Bladder Instillations: DMSO, Rescue Instillations, Heparin Instillations
• Muscle Relaxants: Valium, Flexeril
• Urinary Anesthetics: Prosed, Urised, Pyridium
• OTC Supplements: CystaQ, Cystoprotek, Algonot
• Pelvic Floor Rehabilitation
• Neuromodulation
• Surgery

In 2011, the American Urology Association issued new Guidelines for the Diagnosis and Treatment of Interstitial Cystitis that physicians will find very useful. The UPOINT System for Clinical Phenotyping for Chronic Pelvic Pain can also help physicians create a customized treatment plan, particularly for complex and difficult to treat patients who have multiple medical conditions.

Diet: Diet modification is usually the first suggestion offered by physicians and is critical for patients struggling with bladder irritation and inflammation. Foods high in caffeine, acid, alcohol, salt and/or potassium irritate the wounds in the bladder triggering IC flares, pain and discomfort. The foods most patients must avoid include decaf and regular coffees, black teas, green teas, sodas, all cranberry products, most fruit juices, energy drinks, tomato based foods, chocolate and some vitamins (Vitamin C and B6). On the otherhand, some foods can be soothing to an irritated bladder. An iPhone App, the ICN Food List, is now available as well as a comprehensive list on the web!

Flares: Interstitial cystitis patients often struggle with a sudden and dramatic worsening of their bladder symptoms, known as an IC flare. Lasting from hours to weeks, flares can be unpredictable, disruptive, frustrating and difficult to manage for both newly diagnosed and veteran IC patients. The most frequent types of flares occur when the bladder wall is irritated, when the pelvic floor muscles become tight or spasm and, for women, when hormone levels change.