Interstitial cystitis (IC) is a chronic inflammatory condition of the bladder that causes frequent, urgent, and painful urination and pelvic discomfort. The natural lining of the bladder (epithelium) is protected from toxins in the urine by a layer of protein called glycoaminoglycan (GAG). In IC this protective layer has broken down, allowing toxins to irritate the bladder wall. The bladder then becomes inflamed and tender and does not store urine well.
Unlike common cystitis (inflammation of the bladder caused by bacterial infection), which is associated with urinary tract infections (UTI) and usually treated with antibiotics, no infectious agent has been found in IC. Though not curable, IC is treatable and most patients find some relief with treatment and lifestyle changes.
According to the National Institutes of Health, IC affects about 700,000 people in the United States, 90% of which are women. The average age of onset is 40 years. Although only 25% of cases involve people under age 30, the number of children affected by IC may be greater than commonly believed. IC is often misdiagnosed, and sufferers may see several doctors over the course of years before a diagnosis is made. Increasing awareness of the disease is helping to speed diagnosis and treatment. .
IC is a poorly understood disease with unknown causes. Although no bacteria or viruses (pathogens) have been found in the urine of IC sufferers, an unidentified infectious agent may be the cause. Others believe that IC occurs with ischemia (tissue death) or a deficiency of GAG in the epithelium. It may be an autoimmune disease, in which the immune system attacks healthy cells, perhaps following a bladder infection. Spasms of the pelvic floor muscles may also contribute to the IC symptoms. It is likely that several factors cause the condition.
Other conditions associated with IC include the following:
The connection between IC and these conditions is not understood.
IC may occur following gynecological surgery. Some evidence suggests an increased risk for IC in Jewish people, and studies of mothers, daughters, and twins who suffer from it suggest a hereditary risk factor.
Because of its chronic nature, frequently delayed diagnosis, and the lack of a cure, IC causes psychological and social problems that can affect family, work, and lifestyle: Anxiety Depression Difficulty traveling Fatigue Inability to enjoy usual activities Insomnia Panic Weight fluctuation and eating disorders.
The primary symptom of bladder cancer is blood in the urine (hematuria). Hematuria may be gross (visible to the naked eye) or microscopic (visible only under a microscope) and is usually painless. Other symptoms include frequent urination and pain upon urination (dysuria).
To diagnose IC, diseases that cause similar symptoms must be ruled out. Urine culture and urinalysis are performed to test for bacteria and signs of infection. In men, prostatic fluid may also be cultured.
A cystoscopy with hydrodistention, performed under general anesthesia, is the standard diagnostic procedure for IC. The bladder is filled to capacity with water (commonly) or gas. This allows a urologist to examine the epithelium with a small, telescopic fiber-optic camera, or scope, that is inserted through the urethra to the bladder. Glomerulations (tiny hemorrhages that are the telltale sign of IC) are revealed only while the bladder is distended. These hemorrhages are present in 95% of IC cases.
Less frequently, epithelial ulcerations (Hunner’s ulcers), lesions, and scars are found. Hunner’s ulcers are indicative of IC, though hydrodistention is not needed to see them. A biopsy, in which a tissue sample is removed and analyzed, is performed to distinguish between ulcers and cancer and to evaluate the presence of mast cells, which are sometimes seen in abundance in IC-affected bladders. Some IC sufferers do not have epithelial glomerulations or ulcers. Cystoscopy may also reveal bladder stones, which can cause symptoms similar to IC.
Cystoscopy and hydrodistension are performed under anesthesia because distending the bladder of an IC sufferer is painful and otherwise causes urgent urination. However, hydrodistension may have therapeutic effects. Some patients repeat the procedure occasionally as treatment for IC because it may temporarily alleviate pain and pressure.
The potassium chloride (KCl) sensitivity test (Parsons test) is an experimental procedure used occasionally to test for IC and evaluate a patient's potential response to treatments such as Elmiron® that work on the bladder lining. A catheter is used to instill the bladder with a potassium chloride solution. The KCl solution is thought to reveal deficiencies in the GAG layer of the bladder wall. The test is painful and may be only 60% to 75% accurate. It is not yet widely accepted as a diagnostic test for IC.
Differential Diagnosis Several diseases and conditions have symptoms similar to IC. They may be ruled out, diagnosed instead of IC, or found to be coexistent:
There is no cure for IC; the goal of treatment is to relieve symptoms. Often, treatment effectiveness wanes and a replacement must be found through trial and error. Most patients who suffer from IC find relief, usually with multiple, complementary treatments.
Types of treatment include the following:
electrical nerve stimulation (TENS)
Stress Reduction Techniques, Biofeedback, and exercise may reduce the occurrence of flares by strengthening the muscles of the pelvic floor. For some, exercise exacerbates symptoms by irritating an already tender bladder or sore abdomen.
Most IC patients have the least amount of trouble with rice, potatoes, pasta, vegetables, and chicken. Foods from the above groups that may be tolerable include the following:
Some find that over-the-counter dietary aids such as Prelief®, which helps to make food less acidic, allow them to eat many foods that would otherwise be intolerable.
Smoking worsens symptoms for some people; symptoms improve for many after quitting.
Medications used to treat IC are administered by different methods. They include:
Local medication – medication instilled directly into the bladder via a catheter
Systemic medication – drugs taken orally
Chronic pain medications
Blood, liver, and kidney tests are required every 6 months during DMSO therapy.
Hyaluronic acid (Cystistat®) and Bacille Calmette-Guérin (BCG) These treatments are undergoing clinical trials for IC treatment and are not widely available in the United States. Similar to heparin and GAG, Cystistat may help to repair a deficient bladder lining. BCG is a weakened form of cow tuberculosis (Mycobacterium bovis), which is used in tuberculosis vaccine in some European countries. Research shows that it may stimulate the immune system and improve the cellular makeup of the epithelium. The risk factors of BCG treatment are not fully understood, but may include inflammatory response in the bladder, tuberculosis-like chest infection, and the development of fibrous lumps (granulomas) in the bladder.
Silver nitrate and sodium oxychlorosene (Clorpactin®) were once used for instillation but are now considered outdated, because they cause irritation and greater risk for complications in the abdomen.
Temporary worsening of symptoms can occur up to 36 hours after any instillation treatment. Chemical cystitis is also a possible side effect.
Hydroxyzine (Vistaril®, Atarax®) Hydroxyzine is an antihistamine and mild antianxiety drug. It prevents mast cell degranulation, which is thought to play a role in IC, particularly in patients who have a history of allergies, migraine, and irritable bowel syndrome. Hydroxyzine decreases nocturia (nighttime urination), frequency, pain, and bladder pressure. Side effects include dry mouth and sedation.
Oxybutynin Chloride (Ditropan XL®) Oxybutynin chloride, Detrol®, and a combination of atropine, hyoscyamine, methenamine, methylene blue, phenyl salicylate, and benzoic acid (Urised®) may reduce bladder spasms that cause frequency, urgency, and nighttime urination. Valium and other muscle relaxants may also be used to reduce spasms associated with IC. Amitriptyline
Amitriptyline (Elavil®) and doxepin (Sinequan®) are tricyclic antidepressants that help to block pain, calm bladder spasms, and reduce inflammation; they may be useful in small doses.
Generally, these are calming drugs. Benzodiazepines, for example, are used to treat anxiety; they are now thought to exert analgesic effects and reduce pelvic floor muscle spasm. Antidepressant medications affect levels of neurotransmitters in the brain, which are responsible for mood, concentration, and the ability to manage difficult situations. They, too, are used for their pain-blocking effects. IC sufferers typically have sensitivities to foods and drugs, which may be activated by these medications. It may be necessary to take them initially in small doses. Some may be combined, under the supervision of a physician, to control severe pain.
Many of these drugs carry a risk for kidney and liver dysfunction, and some require routine monitoring and blood tests. Pregnant women should consult their physicians before taking them.