Claire C. Yang, MD
University of Washington (Seattle, WA)

Interstitial Cystitis (IC), also known as Painful Bladder Syndrome (PBS), is a clinical syndrome of urinary urgency, urinary frequency, and pelvic pain that usually worsens with bladder filling. The pain can also radiate to the lower back, urethra, vagina, rectum and the suprapubic area. The diagnosis is made after all other possible causes for pain have been ruled out, such as urinary tract infection, gynecologic problems or stones. PBS is much more common in women than men, although a similar syndrome in men is known as chronic prostatitis or male chronic pelvic pain syndrome.

IC/PBS is a difficult problem to diagnose, so estimating how many suffer from it is problematic. One estimate is as high as 500 out of every 100,000 people. The median age at diagnosis is 42-46 years, and the average person has symptoms for 3-4 years before diagnosis. Many women are mistakenly diagnosed as having recurrent urinary tract infections (UTIs), urethral syndrome, endometriosis, or vulvodynia.

The cause for this painful syndrome is unknown, but there are many theories as to the possibilities. These include an inflammatory, infectious or allergic reaction causing damage to the bladder lining. The resultant damage to the bladder lining causes pain. However, there are many persons with PBS who do not have evidence of inflammation or bladder lining disruption. For this reason, the name Painful Bladder Syndrome is considered by many physicians to be more appropriate than Interstitial Cystitis (cyst = bladder, itis = inflammation), the latter implying that there is an inflammatory process within the bladder. There is on-going research into the causes of IC/PBS.

Diagnosis of PBS. There are no findings within the bladder or in the urine that can be used to definitively diagnose PBS, so the diagnosis is made by the patient’s history, and the absence of any other cause for pain. In the physician’s office, a patient with painful bladder symptoms will have a physical examination, including a pelvic examination. A urinalysis and urine culture is done to make sure that there is no infection or blood in the urine (which may indicate other problems). A voiding diary records how much a person drinks and how much and how frequently she urinates, and can be very helpful in quantifying a person’s definition of urinary frequency and when her pain is exacerbated.

Some patients may undergo cystoscopy, which is a procedure that an urologist may perform to evaluate someone’s bladder pain. A small telescope is inserted through the urethra into the bladder, and the lining of the bladder can be inspected. Filling the bladder with fluid (called hydrodistension) while under anesthesia may result in pinpoint hemorrhages within the bladder lining, and some physicians consider this a diagnostic finding. Other patients may undergo an urodynamics study. During this test, catheters are placed into the bladder, and the bladder is filled with liquid to simulate the normal bladder filling and emptying cycle. With this, the physician can determine if the bladder has appropriate function.

Treatment of IC/PBS.

There are many different approaches to the treatment of IC/PBS, because no single treatment is effective for all persons with the symptom complex. Some of these treatments are listed below:

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 retraining, once pain is under control

Bladder hydrodistention

While the patient is under anesthesia, overstretching the bladder may provide temporary pain relief

Elmiron® (pentosan polysulfate sodium)

Oral medication specifically for IC

Other oral medications such as tricyclic antidepressants (used for their anti-painproperties), antispasmodics, anti-inflammatories and antihistamines

Opioid analgesics – for severe pain

DMSO (dimethyl sulfoxide) – medication instilled into the bladder

Other medications instilled in the bladder:

  • Heparin: to repair the bladder lining
  • Cystistat®*
  • BCG (bacillus Calmette-Guerin)*: used to stimulate the immune response within the bladder

Electrical nerve stimulation:

  • TENS (transcutaneous electrical nerve stimulation)
  • Sacral nerve root stimulation devices *

Surgery (cystectomy=bladder removal, augmentation cystoplasty = enlarging the bladder) is considered a last resort

*Experimental treatments now in clinical trials

Many other treatments have been tried, and they will not be discussed here. Most urologists will try a multimodal approach, using more than one type of treatment to mitigate the symptoms of IC/PBS. The lack of a clear etiology or mechanism of pain precludes a curative remedy at this time, so symptom management is the goal of treatment. There are reports of spontaneous resolution of IC/PBS symptoms, but this is generally uncommon.

For more information on IC/PBS, go to the Interstitial Cystitis Association website.



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