Interstitial Cystitis (pronounced in-tur-STI-shul sis-TY-tis), also known as painful bladder syndrome (PBS), is a chronic, oftentimes painful, inflammatory condition of the bladder. Its cause is unknown. Unlike cystitis or a urinary tract infection (UTI), IC is believed not to be caused by bacteria and does not respond to conventional antibiotic therapy.

There are many similarities between fibromyalgia and IC. Like fibromyalgia, IC is not well recognized within the medical community or the general public. And, like fibromyalgia, IC often goes undiagnosed or misdiagnosed. It is important to note that, just like fibromyalgia, IC is not a psychosomatic disorder nor is it caused by stress.

IC can affect people of any age, race or sex. At present, it is most commonly found in women, though it is thought that men diagnosed with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) may actually be suffering from IC. Recent epidemiological data suggest that there are more than two million cases of IC in the US.

Some or all of these symptoms may be present:

PAIN: Can be in the lower abdominal, urethral, or vaginal area. Pain is also frequently associated with sexual intercourse, even for days after. Men with IC may experience testicular, scrotal, and/or perineal pain, and painful ejaculation.

FREQUENCY: Day and/or night frequency of urination, sometimes severe.

URGENCY: The sensation of having to urinate immediately, which may also be accompanied by pain, pressure, or spasms.

PELVIC FLOOR DYSFUNCTION (PFD): Some people with IC may have pelvic floor dysfunction in addition to IC. PFD is usually related to too much tension or “high-tone”—the opposite of the too-relaxed state or “low-tone” that contributes to incontinence—of the muscles that support the pelvic floor.

OTHER DISORDERS: Some people with IC also report muscle and joint pain, migraines, allergic reactions, and gastrointestinal problems, as well as symptoms of IC. Research indicates that IC has an as yet unexplained association with certain other chronic pain syndromes such as fibromyalgia, vulvar vestibulitis, and irritable bowel syndrome. In order to understand more about the relationship between these conditions, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) recently launched the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network.

Diagnosis
Many people with IC have difficulty obtaining a diagnosis. As with fibromyalgia, currently there is no fool-proof diagnostic test for IC and medical professionals may make a diagnosis based on your symptoms and on ruling out other conditions.

Typically, the following tests can be helpful in making the diagnosis of IC:

• Urine cultures to determine if there is a bacterial infection present. 
• Tests to rule out other conditions that have symptoms resembling IC. These conditions may include bladder cancer, kidney problems, tuberculosis, vaginal infections, sexually transmitted diseases, endometriosis, radiation cystitis, and neurological disorders. It is important to note that these conditions can co-exist with IC.
• Cystoscopy with hydrodistention under general anesthesia if no infection is present and no other disorder is discovered. Cystoscopy during a routine office visit may not reveal the characteristic abnormalities of IC and can be too painful for those who have IC. During cystoscopy with hydrodistention, the bladder is distended under general or regional anesthesia in order to see the pinpoint hemorrhages on the bladder wall that can be a sign of IC. A biopsy of the bladder wall may be taken at this time to rule out other bladder diseases and to assist in the diagnosis of IC.

At this time there is no cure for IC, nor is there an effective treatment that works for everyone. However, many people with IC are helped by one or more of the following treatments:

Diet: Eliminating certain foods (acidic, spicy) may decrease the severity of IC symptoms. Also, smoking, drinking coffee, tea, alcoholic, acidic, carbonated, or caffeinated beverages may exacerbate IC. A complete list of dietary suggestions can be found here. 

Self-help: Self-help techniques can improve quality of life and reduce the incidence and severity of IC flare-ups. These include changes in diet, stress reduction, relaxation techniques, biofeedback, bladder retraining, and exercise, among others.

Oral Medications
Elmiron (pentosan polysulfate sodium): Elmiron received FDA approval in 1996. It is the only oral medication approved specifically for use in IC. It is believed to work by repairing a thin or damaged bladder lining.

Antidepressants: Tricyclic antidepressants such as Elavil (amitriptyline) have been shown to help with both the pain and frequency of IC. In IC, these medications are used for their anti-pain properties, not as a treatment for depression.

Antihistamines: Antihistamines such as Atarax or Vistaril (hydroxyzine) reduce histamine load, which is thought to play a role in IC. These types of medications also relax smooth muscle and promote sleep.

Other Oral Medications: These include anti-inflammatory agents, antispasmodics, bladder analgesics, H2 blockers, and muscle relaxants.

Bladder Instillations
Bladder Distention: The bladder is stretched by filling it with water under general anesthesia. This is part of a diagnostic procedure described above, but may be therapeutic as well for some.

DMSO (dimethyl sulfoxide): This medication is instilled directly into the bladder. It is believed to work as an anti-inflammatory agent and therefore reduces pain. DMSO can be mixed with steroids, heparin, and/or local anesthetics to form a bladder "cocktail."

Other Treatments
External Stimulators: These devices are used externally and are thought to work by stimulating and/or relaxing various nerves and muscles to help to control symptoms.

Implanted Stimulators: These surgically implanted devices are approved for use in treating urinary incontinence, urgency, and frequency. They are not yet FDA-approved for treating IC pain, but are sometimes used experimentally for this purpose.

Surgery: For a small minority of patients whose symptoms are severe and who do not respond to other IC treatments, bladder surgery may be considered. However in some cases, IC symptoms may not improve with surgery. Several types of surgery have been used to treat IC. Laser surgery should be reserved solely for the Hunner’s ulcer form of IC.

Brochures and Fact Sheets for many of these treatments are available through the ICA.

Support
The effect of IC on an individual’s life should not be underestimated. IC can be debilitating and may cause a person to experience feelings of helplessness and despair. The Interstitial Cystitis Association (ICA) is the largest national non-profit IC organization working on behalf of all people with IC to:

• Provide the most comprehensive and up-to-date information on IC.
• Provide IC patients and their families and friends with a support network.
• Educate the medical community and the public about IC.
• Advocate in the public and private sectors for research funding and patients’ rights.
• Promote and provide research funding to find effective treatments and a cure for IC.

Because of the ICA’s success in educating the scientific community about the seriousness of this condition, there has been great progress and there is much hope for more understanding about IC, better treatments, and a cure.

RESOURCES
IC & Diet Issues
Confident Choices: Customizing the IC Diet, by Julie Beyer
A Taste of the Good Life, by Bev Laumann

Books by People with IC
HEALING: A Life with Chronic Illness, Marguerite Guzmán Bouvard
You Don't LOOK Sick: Living Well with Invisible Chronic Illness, Joy Selak and Steven S. Overman, MD
Patient to Patient: Managing Interstitial Cystitis and Overlapping Conditions, by Gaye Grissom Sandler and Andrew Sandler, PhD
Please Understand: The Interstitial Cystitis Guide for Partners, by Gaye Grissom Sandler, Molly Hanna Glidden, Andrew B. Sandler, and William Glidden

Books by People who Treat IC
The Interstitial Cystitis Survival Guide, by ICA Medical Advisory Board member, Robert Moldwin, MD
A Headache in the Pelvis: A New Understanding and Treatment for Prostatitis and Chronic Pelvic Pain Syndromes, by David Wise and Rodney Anderson

Books and Booklets Created and Published by the ICA
The Many Faces of IC-People Living with Interstitial Cystitis: Their Stories
IC & Pain: Taking Control
The ICA's Because You Care Booklet Series:
- Because You Care: Information about Interstitial Cystitis for Family and Friends of People with IC
- Because You Care: Exploring the Unique Intimacy Issues of People with Interstitial Cystitis
- Because You Care: Being Your Own Best Advocate

These booklets, as well as many of the books listed above, are available for purchase through  the Interstitial Cystitis Association.  

Thanks to the Interstitial Cystitis Association for contributing this article.  © ICA 2008 All Rights Reserved