What is Interstitial Cystitis & Painful Bladder Syndrome?
Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), painful bladder syndrome (PBS) or hypersensitive bladder syndrome (HBS), is a condition that results in "an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes." (2009 new American IC/BPS Guidelines).
The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia).
Pain levels can range from mild tenderness to intense, agonizing pain. Pain typically worsens as the bladder fills and is then relieved after urination. Pain occurring after urination may relate to pelvic floor tension and/or muscle spasms. Pain may also radiate to the lower back, upper legs, vulva and penis. Women's symptoms may fluctuate with their menstrual cycle, often flaring during ovulation and/or just before their periods. Men and women may experience discomfort during or after sexual relations. During flares, patients may also experience the “IC Belly,” a sudden and random swelling of the lower abdomen.
When an IC bladder is examined using a procedure called hydrodistention with cystoscopy, physicians often find small, bleeding wounds, also known as petechial hemorrhages or glomerulations. About ten percent of patients may have larger, more painful wounds, called Hunner’s Ulcers. Some patients with mild IC may have bladders that appear normal during a cystoscopy. IC patients rarely test positive for infection in standard urinalysis and urine cultures (1,2).
In recent years, there has been much debate about renaming IC. In the United States, we typically use the term interstitial cystitis (IC) or interstitial cystitis/painful bladder syndrome IC/PBS) though many believe that patients are being frequently misdiagnosed with overactive bladder and/or chronic prostatitis. In Europe, physicians appear to favor the term bladder pain syndrome (BPS). In Japan, the term hypersensitive bladder syndrome is generally used. We urge you not to become invested in any specific name but rather focus on symptoms. If someone has frequency, urgency, pressure and/or pain, they clearly require medical care and should be treated with compassion.
There is no definitive test to make the diagnosis of IC. It is a diagnosis of exclusion. Evaluation usually involves a detailed history, review of old medical records/ urine culture results, physical exam, urine tests, and voiding diary. Abdominal/pelvic imaging studies such as ultrasound or CT may be used. Urodynamics, a test to evaluate bladder function, may be recommended as well as cystoscopy (look inside the bladder).
There is no cure for IC, but many therapies that can help decrease and at times eliminate the symptoms of IC. There is no one therapy that works for every patient. Usually a therapeutic plan is created with input from the patient working with the physician. Some therapies used include behavioral therapies such as diet modification, bladder retraining; oral medications such as Elmiron, nortriptyline, hydroxyzine; pelvic floor physical therapy; bladder instillations (medication placed directly into the bladder); bladder hydrodistension ( stretching of the bladder while the patient is under a general anesthetic); neurmodulation therapies.