The other two cardinal symptoms are frequent urination and an unexpected urge to get to the bathroom immediately. Patients have reported having to use the bathroom up to 60 times a day. Sleep disruption from these symptoms is often a major cause of distress for patients.

Although it is valuable to know those clinical descriptions of the disease, no definition of IC is complete without the vivid descriptions IC patients use to explain how they feel. Often patients will describe the pain as if they have “razor blades or battery acid” in their bladders. Patients may be frustrated about the fact that they are fine one moment and doubled over in excruciating pain the next. Or, they will express defeat and resignation saying, “I may as well put a mattress in the bathroom; I go so often at night.”

IC patients often have other coexisting conditions including irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, vulvodynia, and various allergies, all suggesting a connection with the immune system may be involved in some way. Patients may also experience a variety of mood or mental health disorders related to their disease. People living with chronic pain often experience a tremendous amount of stress, suffering emotionally as well as physically. Their social lives may be disrupted because of their symptoms, and their intimate relations strained. The disability of many with IC is very real; nearly half of all IC patients in 1987 could not hold full-time jobs. Relationships can be strained, and many patients become depressed.

The good news is that a well-designed and individualized treatment plan can moderate symptoms for most IC patients. Oral medications, intravesical instillations (medications put into the bladder via a catheter), physical therapy, and a variety of self-help methods are the most common treatments. One of the most conservative treatments, dietary modification, is helpful for over 90% of IC patients—a claim that no other treatment can make to date. In fact, many patients can regain an acceptable quality of life by simply eliminating the most abrasive foods—coffee, tea, chocolate, alcohol, citrus fruits and juices, chili spices, tomato products, and soy products. The most important thing to remember is that there is always hope for healing, and many patients find a way to coexist with their fragile bladders, living normal, active lives

To learn more about treatment options, visit the Interstitial Cystitis Association and the Interstitial Cystitis Network.

This article was adapted from copyrighted material written by Julie Beyer, MA, RD including Confident Choices: Customizing the Interstitial Cystitis Diet, Confident Choices: A Cookbook for IC and Overactive Bladder, and Interstitial Cystitis: A Guide for Nutrition Educators.