Unique to Women

Painful Bladder Syndrome/Interstitial Cystitis

Painful bladder syndrome/interstitial cystitis (PBS/IC) was for many years thought to be an inflammatory condition of the bladder wall, but recently it has been recognized as poorly understood chronic pain syndromes that develop for multiple reasons. A clinical diagnosis is based primarily on symptoms of urgency/frequency of urinating and pain in the bladder and/or pelvis. ²⁴ Standard treatments of many decades are no longer routinely considered effective. One large urological study from 2000 concluded that “no current treatments have a significant impact on symptoms with time.”²⁵

PBS/IC is at least five times more common in women than men, affecting close to 500,000 females in the United States, with an average age of onset of about forty years; 25 percent of those affected are under age thirty.

PBS/IC has symptoms similar to those of the common urinary tract infection known as cystitis. However, with PBS/IC, routine urine cultures are negative, and there is usually no response to antibiotics. You may feel pelvic pain and pressure and an urgent need to urinate, sometimes as often as sixty to eighty times a day. You may also have vaginal and rectal pain. Pain during sexual intercourse is common. The symptoms can vary from mild to severe.

Diagnosis

PBS/IC may be incorrectly diagnosed as urethral syndrome or trigonitis, or you may be told there’s nothing wrong and that you have a “sensitive bladder.” A complete battery of urologic tests typically produces negative results. Conditions that have similar symptoms include bladder infections, kidney problems, vaginal infections, endometriosis, and sexually transmitted infections (STIs).

Medical Treatment for PBS/IC

There is no consistently effective treatment or cure for PBS/IC. However, the most commonly recommended approaches are:

• Medication, including nonsteroidal antiinflammatory drugs, antispasmodics, and antihistamines. Pentosan polysulfate sodium (Elmiron), an oral medication, may protect the bladder from irritants in the urine.
• Low-dose antidepressants, which appear to have antipain properties
• Diet changes, eliminating caffeinated beverages, alcohol, artificial sweeteners, spicy foods, citrus fruits, and tomatoes
• Transcutaneous electrical nerve stimulation (TENS) to block pain, using a small portable unit worn on the body

The following approaches all involve surgery, the benefits of which are sometimes unproved, and all of which pose significant risks:

• Bladder distention (hydrodistention) stretches the bladder by filling it with water while you are under regional or general anesthesia.
• Dimethyl sulfoxide (DMSO, Rimso-50), an anti-inflammatory medication, is placed directly into the bladder.
• Oxychlorosene sodium (Clorpactin) is placed directly into the bladder; regional or general anesthesia may be necessary for this.
• Major surgery (partial or complete removal of the bladder, or of certain nerves leading to the bladder) is often followed by severe complications and should be done only as a last resort.

Developing effective IC therapies is a major challenge facing all researchers in this field. The American Urological Association is planning to publish the first guidelines regarding methodology for diagnosis and treatment during 2011. In 2010, a large multicenter NIH-funded study reported on findings that myofascial physical therapy (specialized stretching of the thin tissue that covers all the organs of the body) was shown to be effective when compared with conventional massage techniques.²⁸   

"I Wanted to Know What Other Patients Had Experienced"     From left to right: Dr. Elizabeth Kavaler, Kay Zakariasen, and Dr. Jennifer Hill

My struggle to learn about the nature, benefit, harm, and alternatives to standard urological treatments for painful bladder syndrome/interstitial cystitis syndrome (PBS/IC).* My own experience with urological treatment for PBS/IC led me to the New York Academy of Medicine to find out why, after standard treatment, chronic and unbearable symptoms had begun. What I found in the medical literature about dilation, hydrodistention, instillations of chemicals, and many more treatments stunned me. I had one bladder infection, cleared up with one antibiotic, and then had no symptoms. Unfortunately, a gynecologist’s referral to a urologist and two more opinions convinced me that my urethra was “too narrow” and would have to be dilated for the rest of my life. I was told, “You’ll be fine.” I had ten dilations, one about every six months for five years. Then I suddenly had the feeling that I had to urinate—desperately—but no infection was detected. I also experienced severe intestinal pain after eating. Several doctors later, I began to conclude that the treatment I had was the cause of my problem. Three decades later I finally found help and told my story in a National Women’s Health Network newsletter article.26 Since then, I have been sharing my story and medical findings. The urological literature emphasized the importance of widening urethras, but there were urologists who disagreed with this approach, calling dilation a “failure” and a “quality of care problem in urology.” One urologist I interviewed on film called it “voodoo” and suggested that it was the economic mainstay of many private practices. I wanted to know what other patients had experienced. With the help of several doctors supportive of my efforts, I developed a questionnaire (cystitispatientsurvey.com); 750 responses were analyzed by Dr. Elizabeth Kavaler, M.D., and several other doctors. Jennifer Hill, M.D., authored the article publishing their findings.27 Only 25 percent of patients reported some improvement in symptoms, not enough to justify surgeries.* Surgical interventions include dilation, hydrodistention, and instillations of caustic chemicals. To justify such treatments, doctors need to demonstrate that these techniques provide more benefit than harm and that they are reasonably safe and effective. I now realize that this is a field with minimal evidence of effectiveness for the surgeries that are routinely performed. Research currently under way will, I hope, offer better solutions for women with PBS/ IC. In the meantime, I believe that less-invasive approaches offer a far wiser course. Click here [coming soon] to read patient experiences with this disease and which treatments they found to be either harmful or helpful. * I want to thank the many doctors (including Dr. Virginia Sharpe), many volunteers (including Elena M. Paul, executive director of Volunteer Lawyers for the Arts), and the patients who completed our survey, as well as thirty who provided medical information and personal stories in interviews. More information can be found at Kitchener-Waterloo Interstitial Cystitis Support (skatecrooked.com/kwics/).

Notes:

25. K. J. Propert et al., “A Prospective Study of Interstitial Cystitis: Results of Longitudinal Follow-up of the Interstitial Cystitis Data Base Cohort,” Journal of Urology 163 (2000): 1434–39.
26. Kay Zakariasen and Jennifer R. Hill, “Treatment and Mistreatment of Chronic ‘Urgency and Frequency’—Gathering Women’s Experiences About Interstitial Cystitis,” Women’s Health Activist Newsletter, March– April 2009.
27. Jennifer R. Hill et al., “Patient Perceived Outcomes of Treatments Used for Interstitial Cystitis,” Urology 71 no. 1 (January 2008): 62–66.
28. Mary P. FitzGerald et al., “Randomized Multicenter Feasibility Trial of Myofascial Physical Therapy for the Treatment of Urological Chronic Pelvic Pain Syndrome,” Journal of Urology 182 (August 2009): 570–80.

Excerpted from the 2011 edition of Our Bodies, Ourselves. © 2011, Boston Women's Health Book Collective.