What is the best way to explain interstitial cystitis to a patient?

How to Explain Interstitial Cystitis to a Patient

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic bladder condition characterized by pain, pressure, or discomfort related to the bladder, along with urinary frequency and urgency, lasting for more than six weeks, without infection or other identifiable causes. 1

Key Points to Cover with Patients

Definition and Symptoms

• IC/BPS is a chronic inflammatory condition of the bladder wall 2
• The hallmark symptom is pain (including pressure and discomfort) perceived to be related to the bladder 3
• Pain may be felt throughout the pelvis—in the urethra, vulva, vagina, rectum—and in other locations like the lower abdomen and back 3
• Patients typically experience:
  • Urinary frequency (needing to urinate often)
  • Urinary urgency (feeling a constant need to urinate)
  • Pain that worsens with bladder filling and improves with urination 3
  • Pain that may worsen with certain foods or drinks 3

Distinguishing Features

• Unlike a urinary tract infection, urine cultures are negative and antibiotics don't provide relief 2
• Unlike overactive bladder, patients typically void to avoid or relieve pain rather than to avoid incontinence 3
• Symptoms often follow a pattern of flare-ups and remissions 4

Prevalence and Demographics

• More than 90% of those affected are women 2
• The condition affects over 700,000 people in the US 2
• It is likely more common than previously thought 2

Explaining the Diagnosis Process

• Explain that IC/BPS is a diagnosis of exclusion 5
• Diagnostic steps include:
  • Ruling out infection with urine cultures 1
  • Excluding other conditions with similar symptoms 3
  • Possibly performing cystoscopy (looking inside the bladder with a camera) 1
  • In some cases, finding characteristic changes in the bladder wall during cystoscopy 4

Treatment Approach

• Emphasize that while there is no cure, symptoms can be managed effectively 2
• Treatment follows a stepwise approach, starting with conservative options 1:

  1. Self-care practices:

     • Stress management techniques
     • Dietary modifications to identify and avoid trigger foods
     • Bladder training techniques
     • Fluid management 1

  2. Medications:

     • Oral medications like amitriptyline or pentosan polysulfate sodium (Elmiron) 1
     • Pain management medications 1

  3. Bladder treatments:

     • Medications instilled directly into the bladder, such as DMSO (Rimso-50) 6
     • These treatments are typically repeated every two weeks until maximum relief is obtained 6

  4. Advanced options (if other treatments fail):

     • Physical therapy for pelvic floor muscles 1
     • More invasive procedures in severe cases 1

Living with IC/BPS

• Reassure patients that with proper management, symptoms can improve
• Explain that treatment efficacy should be assessed every 4-12 weeks 1
• Encourage patients to track symptoms and triggers
• Mention that support groups can be helpful 4

Common Misconceptions to Address

• IC/BPS is not an infection, though it may feel similar to a urinary tract infection 7
• It is not caused by poor hygiene
• It is not a psychological condition, though stress can worsen symptoms
• It is not contagious

By providing clear information about IC/BPS, you can help patients understand their condition, set realistic expectations for treatment, and empower them to participate actively in managing their symptoms.