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Interstitial Cystitis Fact Sheet

Interstitial Cystitis
(IC) is a chronic inflammatory condition of the bladder wall which frequently goes undiagnosed. Although the cause is unknown and no treatment is uniformly effective for everyone, many treatments are available and the vast majority of patients obtain relief. Symptoms include bladder pain, urinary urgency, day and night frequency (up to 60 times per day), suprapubic (lower abdominal) or perineal (area between scrotum and anus in men, or vagina and anus in women) pain and pressure. Sexual intercourse can be painful. More than 700,000 Americans have IC. Average age of onset is 40. Twenty five percent are under the age of 30. Ninety percent are women, however preliminary studies of men with nonbacterial prostatitis indicate that they may actually have IC, as well.

Diagnosis
IC is frequently misdiagnosed as an acute urinary tract infection (cystitis), a disorder which can be successfully treated with antibiotics. A cystoscopy with hydrodistention under general anesthesia is required to make a diagnosis of interstitial cystitis. The bladder is distended to check for pinpoint hemorrhages on the bladder wall that are the hallmark of IC.

A number of other diseases must be ruled out, such as bladder infection, bladder cancer, sexually transmitted diseases, neurological disorders, kidney disease, and vaginal infections.

Treatments
Treatments that can successfully relieve symptoms in many patients include:

  • Diet modification. A diet low in acidic foods, and avoiding beverages such as coffee, tea, carbonated and/or alcoholic drinks, can be helpful in reducing IC symptoms. Prelief®, a dietary supplement, can help to reduce the symptoms of IC by reducing the acids in foods and beverages.
  • Stress reduction techniques, such as biofeedback and pelvic floor relaxation exercises
  • Bladder hydrodistention
  • Elmiron® (pentosan polysulfate sodium) - oral medication specifically for IC
  • Other oral medications such as tricyclic antidepressants (used for their anti-pain properties), antispasmodics, anti-inflammatories and antihistamines
  • Opioid analgesics - for severe IC pain
  • DMSO (dimethyl sulfoxide) - medication instilled into the bladder, specifically for IC
  • Other instilled medications:
    Heparin
    Cystistat®*
    BCG (bacillus Calmette-Guerin)*
    *Experimental medications now in clinical trials
  • Electrical nerve stimulation:
    TENS (transcutaneous electrical nerve stimulation)
    Sacral nerve root stimulation devices*
    *New experimental devices
  • Surgery is a last resort

IC Developments

  • Elmiron® (the first oral medication specifically for use in IC) was approved by the FDA in September 1996.
  • BCG (bacillus Calmette-Guerin) is an experimental new therapy. Nationwide clinical trials are now underway.
  • Recent research indicates that in some patients, IC may be associated with other diseases such as vulvodynia (vulvar/vaginal pain), fibromyalgia, irritable bowel syndrome, and endometriosis, as well as other disorders.
  • A National Five-Year IC Database (ICDB) study funded by NIH to study the patient population, their treatment responses, and disease progression has been completed, and a new 6-year program of clinical trials to study various IC treatments, called the IC Clinical Trials Group (ICCTG) has been established.

Interstitial Cystitis Association
The Interstitial Cystitis Association (ICA), based in Maryland, is a not-for-profit voluntary health organization, dedicated to providing support and information to patients, education of the lay and medical communities, and promotion and funding for IC research. In existence since 1984, the ICA has funded over $1,000,000 in IC research. The ICA’s leadership includes Vicki Ratner, M.D., Founder, President, and Chief Medical Officer; and a Medical Advisory Board of distinguished physicians and researchers. ICA volunteers provide telephone and online support to patients throughout the United States.

Interstitial Cystitis Association phone: 1-800-HELP ICA email: icamail@ichelp.org 2007 ICA. All Rights Reserved. Admin