What are the treatment options for a patient with end-stage interstitial cystitis?

End-Stage Interstitial Cystitis Treatment

For patients with end-stage interstitial cystitis who have failed all conservative and medical therapies, major surgery including urinary diversion with or without cystectomy should be undertaken, as this represents the definitive treatment option for refractory disease that severely impacts quality of life. 1

Defining End-Stage Disease

End-stage interstitial cystitis (IC/BPS) refers to patients who have:

• Failed multiple lines of conservative, oral, and intravesical therapies 1
• Persistent severe symptoms including debilitating bladder pain, extreme urinary frequency, and nocturia that profoundly diminish quality of life 1
• Often demonstrate reduced bladder capacity due to fibrosis 1
• May have Hunner lesions that have not responded to fulguration or injection therapy 1

Surgical Treatment Options

Urinary Diversion (Sixth-Line Treatment)

Major surgery including substitution cystoplasty or urinary diversion with or without cystectomy should be considered for carefully selected patients in whom all other therapies have failed to provide adequate symptom control and quality of life. 1

Key considerations:

• Urinary diversion will reliably relieve frequency and nocturia 1
• Pain relief is less predictable - urinary diversion sometimes can relieve pain, but this outcome is not guaranteed 1
• This option should only be pursued after documented failure of all prior treatment lines 1
• Patients must understand that pain may persist even after diversion, as the pain syndrome can have central sensitization components 1

Patient Selection Criteria

Appropriate candidates must demonstrate:

• Documented failure of first through fifth-line therapies 1
• Severe functional impairment affecting work capacity, social relationships, and self-esteem 1
• Willingness to accept permanent urinary diversion and its associated lifestyle changes 1
• Realistic expectations regarding pain outcomes 1

Pre-Surgical Fifth-Line Options

Before proceeding to surgery, the following fifth-line treatments should be exhausted:

Cyclosporine A

• May be administered orally if other treatments have failed 1
• Requires experienced practitioners willing to provide long-term monitoring 1
• Not FDA-approved for IC/BPS 1

Intradetrusor Botulinum Toxin A

• Can be administered for refractory cases 1
• Patients must accept the possibility of requiring intermittent self-catheterization post-treatment 1
• Limited evidence base with small sample sizes 1

Neuromodulation

• Trial of neurostimulation may be performed, with permanent device implantation if successful 1
• Should be limited to experienced practitioners 1

Fourth-Line Treatment for Hunner Lesions

If Hunner lesions are present and not previously treated:

• Fulguration with laser or electrocautery and/or injection of triamcinolone should be performed 1
• This can provide significant symptom relief in the subset of patients with visible lesions 1
• Cystoscopy remains the only reliable method to diagnose Hunner lesions 1

Critical Management Principles

Multimodal Pain Management

Pain management approaches including pharmacological therapy, stress management, and manual therapy should be initiated and continually assessed for effectiveness. 1

• If pain management remains inadequate, multidisciplinary referral is warranted 1
• Psychological stress is associated with heightened pain sensitivity in IC/BPS patients 1

Periodic Treatment Reassessment

Efficacy of all treatments should be periodically reassessed, and ineffective treatments should be stopped. 1

• Baseline voiding symptoms and pain levels must be documented using validated instruments (GUPI, ICSI, or VAS) 1
• At minimum, a one-day voiding log should establish the characteristic low-volume, high-frequency voiding pattern 1

Common Pitfalls to Avoid

1. Do not offer long-term oral antibiotics - these show no efficacy and risk fostering antibiotic-resistant organisms 1
2. Do not offer intravesical BCG - associated with potentially life-threatening adverse events without proven efficacy 1
3. Do not offer intravesical resiniferatoxin - high-quality RCTs demonstrate no statistical benefit 1
4. Avoid premature surgical intervention - surgery should only be considered after documented failure of all conservative measures 1
5. Set realistic expectations - patients must understand that urinary diversion reliably improves frequency but may not eliminate pain 1

Prognosis and Counseling

Patients considering end-stage surgical management should understand:

• IC/BPS is typically a chronic disorder requiring continual management 1
• No single treatment is effective for the majority of patients 1
• Acceptable symptom control may require trials of multiple therapeutic options 1
• Surgery represents a last resort when quality of life is severely compromised despite maximal medical therapy 1