Counseling Patients with Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS)

Clinicians should consider four topic areas when counseling individuals with interstitial cystitis/painful bladder syndrome (IC/PBS):

• Understanding the challenges of IC/PBS
• Exploring diagnosis
• Exploring treatment options
• Supporting self-care practices

Understanding the Challenges of IC/PBS

IC/PBS can be an extremely challenging condition to live with for a number of reasons. IC/PBS can cause unremitting pain and yet be an “invisible” chronic illness. Patients may look healthy despite persistent symptoms and severe pain. The urgency, frequency, and nocturia associated with IC/PBS often disrupt an individual’s daily life. Many patients experience a significant delay in diagnosis, due in part to a lack of familiarity with IC/PBS among providers. The delay in diagnosis may be exacerbated by a delay in relief of symptoms, because some IC/PBS treatments can take months to be effective.

In addition, individuals with IC/PBS often experience sexual intimacy problems, are more likely than the general population to have associated diseases, and must live with side effects of medications and the effects of chronic illness on family life or employment. Finally, the family, co-workers, and friends of an individual with IC/PBS may not fully appreciate and validate his or her experience, leading to a sense of isolation. It’s important to appreciate these challenges when working with a patient diagnosed with IC/PBS or whose symptoms suggest IC/PBS.

Exploring Diagnosis

As mentioned previously, IC/PBS is a diagnosis of exclusion, and specific markers are not available to make a definitive diagnosis. However, clinicians can reassure patients that it is possible to use a working diagnosis and to treat symptoms. They may need to explain the concept of a working diagnosis and discuss the possibility of making a diagnosis without invasive techniques. Providers should explain the importance of the medical history, symptom questionnaires, and a voiding history. When taking a symptom history, providers should be sure to use a range of terms when querying patients about pain, because some patients will deny pain yet affirm that they suffer from bladder discomfort or pressure. It may be helpful to ask patients to rate their pain, on a scale from 0 to 10, for example. Providers also should discuss with patients the need and timing of referral to a urologist or IC/PBS specialist. Finally, providers should encourage patients to ask questions and seek additional sources of information, such as the Interstitial Cystitis Association (ICA) at 1-800-HELP ICA and www.ichelp.org.

Exploring Treatment Options

When counseling patients with IC/PBS, providers should explore the various options available for treating the condition. Providers should reassure patients that treatment can be tailored to suit their specific symptoms and needs. They should explain the oral therapy options and ask about previous use of oral therapy for other conditions. They also should discuss potential drug-related side effects and methods for minimizing or avoiding them. Providers should list available intravesical therapy options and describe the procedure used for bladder instillation. Providers should discuss the timing of referral to a urologist or IC/PBS specialist. Finally, providers should encourage patients to ask questions and seek additional sources of information and support.

Supporting Self-Care Practices

Self-care is an essential component of IC/PBS treatment, helping patients to manage symptoms and providing them with a sense of control over the condition. Providers can support self-care in a number of ways. Providers should describe the elimination diet, provide a list of possible trigger substances, and consider referral to a registered dietician knowledgeable about IC/PBS. They should make sure to explain that each patient is unique in terms of the foods and beverages that trigger symptoms—and that some patients’ symptoms seem unaffected by diet. Providers should encourage patients to avoid using fluid restriction to reduce urinary frequency, but instead use controlled fluid intake to manage symptoms. If IC/PBS symptoms increase when urine is concentrated, providers should suggest that patients increase their fluid intake (or “drink to thirst”), but caution them not to exceed 2 liters per 24 hours.¹ Providers also should discuss options for stress reduction with patients, including meditation, yoga, massage therapy, progressive muscle relaxation, and support from other IC/PBS patients. Finally, providers should consider referral to physical therapy if they suspect that pelvic floor dysfunction is present.

Resources for Patient Support and Education

When counseling individuals with possible or diagnosed IC/PBS, providers should ensure that patients are aware of the resources available for support and education.

The Interstitial Cystitis Association (ICA) is a co-partner in this program. The organization was founded in 1984 by Vicki Ratner, MD, a physician who had bladder symptoms (eventually determined to be IC/PBS) for which she was unable to find proper diagnosis or treatment. The goals of the ICA are to raise awareness about the condition, support patients with IC/PBS and their families, and to provide information about IC/PBS. The ICA also raises funds for and funds IC/PBS-related research and works with Congress and the National Institutes of Health (NIH) to ensure that funds are dedicated to study IC/PBS. The ICA maintains an informational Web site, a registry of health care professionals with experience in IC/PBS diagnosis and management, and produces books, newsletters, magazines, videos, and fact sheets about IC/PBS. Patients can contact the ICA at www.ichelp.org or 1-800-HELP ICA.

IC/PBS is associated with a number of diseases, such as irritable bowel syndrome, fibromyalgia, and vulvodynia. Patients with IC/PBS and associated diseases may find it helpful to contact organizations that can provide disease-specific education and support. A selective list of these organizations and Web site addresses is shown in Figure 9.

Reference:

1. Newman DK. Managing and Treating Urinary Incontinence. 2nd edition. Baltimore, MD: Health Professions Press; 2008. Appendix B.