Interstitial cystitis (IC) is a challenging disorder, one that requires the patient, his or her physician and consulting specialists to work as a team to identify the therapies that are the most effective. The specific cause of IC has yet to be identified despite a significant world-wide research effort. Although there is no cure as yet, specialists at Cleveland Clinic's Glickman Urological and Kidney Institute have devised a variety of approaches that have proven to be effective for our patients.
Symptoms are similar to those seen with a urinary tract infection, including frequent urination, a continual strong urge to urinate, reduced bladder capacity, feelings of pressure, pain or tenderness in the genital area and pelvis, and painful sexual intercourse. In most but not all individuals, the onset of these symptoms is acute (sudden). In about half of individuals with IC, the symptoms may be present for weeks to several months and then spontaneously disappear only to suddenly reappear.
Activities, events or substances that might constitute definite risks are not known. Instead, epidemiologists (people who study the spread of disease) speak of "associations." Women with IC are more likely to have had gynecologic surgery and/or a history of urinary tract infections. They are 10 to 12 times more likely to have had bladder problems in childhood.
IC has also been associated with a number of other diseases such as asthma, endometriosis, food allergies, hay fever (pollen allergy), inflammatory bowel disease, lupus, migraine headaches, rheumatoid arthritis, sinusitis, and fibromyalgia.
Diagnostic testing can be extensive. Because there is no specific bacteria, virus or physical disorder that can be pinpointed as the cause of IC, the diagnostic procedure is designed to rule out every other possible disorder that might be producing symptoms. This includes urinary tract infections, vaginal infections, bladder cancer, bladder inflammation, tuberculosis cystitis, kidney stones, endometriosis, neurological disorders, and sexually transmitted diseases.
Most of these diseases can be ruled out with simple blood and urine laboratory analyses. The elimination of these diseases indicates a diagnosis of IC, but does not confirm the diagnosis. The examining physician needs to look at the inner walls of the bladder with cystoscopy. The bladder is distended (stretched to capacity) with fluid or air while the patient is under general anesthesia. A thin, hollow tube carrying fiber optics to illuminate and visualize the inner bladder is inserted through the urethra into the bladder.
The doctor will be looking for large areas of inflammation, fissures and scars that may crack or bleed while the bladder is distended. Hunner’s ulcer, a specific type of inflammation, is strongly associated with IC but the appearance of these ulcers is rare. The doctor may take a biopsy, a small sample of tissue to be examined under a microscope by a pathologist, a specialist in identifying diseased cells and tissues. A number of urodynamic studies to ascertain the bladder capacity, bladder pressures, completeness of filling and emptying, and rate of voiding may be conducted.
There is no single finding that is diagnostic of IC. Rather it is the accumulation and experienced evaluation of all the information that these studies provide that allows the diagnosis.
Since there is no known cure for IC, treatment is targeted to the individual and his or her symptoms. Therapy begins with extensive patient education and consultation. At the Cleveland Clinic Glickman Urological and Kidney Institute the patient, the physician and specialists work as a team to design therapies that resolve symptoms. This may involve trials of differing therapies to find those that are the most effective. The goal is to identify the least invasive, least expensive, most reversible and most effective therapy.
Initial treatment may include diet and fluid management, time, stress and behavioral therapies. To these may be added a variety of drug treatments with Elmiron (the first oral medication approved specifically for IC), antihistamines, antidepressants, and analgesics.
These may be supplemented with more invasive therapies such as bladder distension or bladder instillation. A number of patients find that bladder distension, filling the bladder to capacity under pressure, relieves symptoms. In bladder instillation DMSO (dimethyl sulfoxide) is fed into the bladder via a catheter, held for about 15 minutes, and expelled. Treatment is repeated weekly for about six to eight weeks. Many patients report symptom improvement three to four weeks after the first cycle of treatment.
Transcutaneous electrical stimulation (TENS) has been shown to benefit some patients. This therapy involves placing electrodes on the skin at specific locations and delivering minute electrical pulses that stimulate nerves. Acupuncture has been shown to help some patients.
Drugs, other than over-the-counter analgesics to manage low to mild pain, are considered to be second-tier therapy. Although no drugs other than Elmiron are specifically recommended for IC, a wide range of agents have been shown to affect the varied symptoms of IC. The experience of the doctor is invaluable in selecting drugs that might relieve symptoms.
There is also a range of surgical procedures that may bring relief. Surgery is thought of as a last option, one to be considered when all other therapies have failed and symptoms are debilitating. The reason surgical interventions are placed at the bottom of a long list of approaches is that most surgical procedures are irreversible and as with other therapies, there is no guarantee of success. Among the surgical options are bladder augmentation (enlargement of the bladder), bladder removal (cystectomy), and creation of a neobladder (new bladder).