Counseling Tips

Acknowledging challenges

• Acknowledge the challenges of living with IC/PBS:
• Unremitting pain
• Living with an “invisible” chronic illness
• Disruption of daily life by urgency, frequency, and nocturia
• Delays in diagnosis due in part to a lack of familiarity with IC/PBS among providers
• Delays in relief of symptoms (some IC/PBS treatments take months to be effective)
• Sexual intimacy problems
• Greater likelihood of having certain associated conditions (e.g., irritable bowel syndrome, fibromyalgia, allergies)
• Living with side effects of medications
• Dealing with the effects of chronic illness on family life or employment
• Lack of full appreciation and validation of patient’s experience by family, coworkers, and friends, sometimes leading to a sense of isolation

Exploring IC/PBS diagnosis

• Reassure patients that it is possible to use a working diagnosis and to treat symptoms.
• Discuss the possibility of making a diagnosis without invasive techniques.
• Explain the importance of the medical history, symptom questionnaires, and a voiding history.
• When asking about pain in taking a history of symptoms, use a range of terms (some patients will deny pain yet affirm that they suffer from bladder discomfort or pressure).
• Ask patients to rate their pain (e.g., on a scale from 0 to 10).
• Discuss the need and timing of referral to a urologist or IC/PBS specialist.
• Encourage patients to ask questions and seek additional sources of information, such as the Interstitial Cystitis Association at (800) HELP ICA and www.ichelp.org.

Referring for Specialist’s Care

• Referral to a specialist is recommended if:
• Symptoms do not respond to oral therapies.
• The diagnosis is in doubt.
• The provider is uncomfortable treating IC/PBS or lacks the time to do so.
• Refer patients needing a specialist’s care to a urologist, gynecologist, or urogynecologist who has experience diagnosing and treating IC/PBS.
• Inquire about the specialist’s comfort and experience with IC/PBS before referring.
• Consider referral to a pain management clinic if appropriate urologic and gynecologic evaluations have been performed and interventions have not been sufficiently effective in relieving pain.

Exploring treatment options

• Explore available options with patients.
• Reassure patients that treatment can be tailored to suit their specific symptoms and needs.
• Explain the oral therapy options and ask about previous use of oral therapy for other conditions.
• Discuss potential drug-related side effects and methods for minimizing or avoiding them.
• List available intravesical therapy options and describe the procedure used for bladder instillation.
• Discuss the timing of referral to a urologist or IC/PBS specialist for treatment.
• Encourage patients to ask questions and seek additional sources of information and support.

Supporting dietary and 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.

• Supporting dietary practices
• Describe the elimination diet.
• Provide a list of possible trigger substances.
• Consider referral to registereddietitian who is knowledgeable about IC/PBS.
• Explain that each patient is unique in terms of the foods and beverages that trigger symptoms, and that some patients’ symptoms seem to be unaffected by diet.
• Supporting self-care practices
  • Encourage patients to avoid using fluid restriction to reduce urinary frequency, but instead use controlled fluid intake to manage symptoms.
• Discuss options for stress reduction with patients, including meditation, yoga, massage therapy, progressive muscle relaxation, and support from other IC/PBS patients.
• Recommend that patients try applying heat or cold to the perineum or suprapubically to reduce symptoms.
• Recommend practices to minimize or prevent further discomfort, such as avoiding straining when moving bowels and treating constipation.
• Discuss the impact of IC/PBS on sexuality.
• Recommend that patients with dyspareunia experiment with various positions and use of vaginal lubricants.
• Consider referral to physical therapy if pelvic floor dysfunction is present.