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Diagnosis and Management of Interstitial Cystitis/Painful Bladder Syndrome

(Published May 2008)

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.