What are the symptoms and treatment options for a patient with interstitial cystitis?

Symptoms and Treatment for Interstitial Cystitis

Symptoms

Pain (or pressure/discomfort) is the defining symptom of interstitial cystitis/bladder pain syndrome (IC/BPS), typically worsening with bladder filling and improving with urination, accompanied by urinary frequency and urgency lasting more than six weeks. 1

Core Symptom Complex

• Bladder and pelvic pain that patients may describe as "pressure" or "discomfort" rather than pain—clinicians must ask about all three descriptors 1
• Pain locations include suprapubic region, urethra, vulva, vagina, rectum, lower abdomen, and back 1
• Urinary frequency and urgency with sensation of constant need to void 1
• Nocturia disrupting sleep 1
• Pain that worsens with specific foods/drinks (coffee, citrus, spicy foods) 1

Associated Symptoms

• Dyspareunia (painful intercourse) with fear of pain during sexual activity 1
• Dysuria and ejaculatory pain in men 1
• Pain relationship to menstruation in women 1

Quality of Life Impact

• Severe depression, anxiety, and catastrophizing at higher rates than controls 1
• Sexual dysfunction that is moderate to severe 1
• Work life disruption during most productive years 1
• Quality of life worse than endometriosis, vulvodynia, or overactive bladder 1

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Treatment Approach

Begin with behavioral modifications and self-care practices for all patients, then escalate systematically through oral medications and intravesical therapies, reserving advanced interventions only for refractory cases. 2, 3

Step 1: Behavioral Modifications and Self-Care (Start Here for Everyone)

• Eliminate bladder irritants: coffee, citrus products, spicy foods 2, 3
• Implement elimination diet to identify personal trigger foods 2, 3
• Fluid management to alter urine concentration and dilute irritants 2, 3
• Apply local heat or cold over bladder or perineum for pain relief 2, 3
• Stress management: meditation and imagery techniques 2, 3
• Pelvic floor muscle RELAXATION exercises only—never strengthening exercises, which worsen symptoms 2, 3
• Bladder training with urge suppression 2
• Over-the-counter options: quercetin and calcium glycerophosphates 2

Step 2: Oral Medications

Start with amitriptyline 10 mg daily, titrating up to 100 mg per day as tolerated—this has Grade B evidence showing superiority to placebo. 2, 3

• Common side effects: sedation, drowsiness, nausea 2
• Alternative oral options: cimetidine and hydroxyzine 2

Pentosan polysulfate sodium (100 mg three times daily) is the only FDA-approved oral medication for IC/BPS. 2, 3

• CRITICAL CAVEAT: Requires mandatory regular ophthalmologic examinations due to risk of macular damage and ocular toxicity 2, 3

Step 3: Intravesical Therapies

Dimethyl sulfoxide (DMSO) 50 mL instilled directly into bladder for 15 minutes, repeated every two weeks until maximum relief is obtained. 4

• Apply lidocaine jelly to urethra before catheter insertion to prevent spasm 4
• Patients will experience garlic-like taste within minutes, lasting several hours 4
• Odor on breath and skin may persist up to 72 hours 4
• Consider oral analgesics or belladonna/opium suppositories before instillation to reduce bladder spasm 4
• For severe cases with very sensitive bladders, perform initial treatments under anesthesia (saddle block suggested) 4

Heparin instillations repair the damaged glycosaminoglycan (GAG) layer and provide clinically significant symptom improvement 2, 3

Lidocaine instillations provide rapid onset temporary relief of bladder pain 2, 3

Step 4: Cystoscopy Considerations

Perform cystoscopy when diagnosis is uncertain or when Hunner lesions are suspected—the presence of Hunner lesions fundamentally changes treatment. 1, 5

• Hunner lesions are the only consistent cystoscopic finding diagnostic for IC/BPS 1
• Lesions become easier to identify after distention when cracking and mucosal bleeding appear 2
• If Hunner lesions present: Perform fulguration (laser or electrocautery) and/or inject triamcinolone for significant symptom relief 2, 3
• Avoid high-pressure, long-duration hydrodistension due to risk of bladder rupture and sepsis 3

Step 5: Advanced Interventions for Refractory Cases

Sacral neuromodulation may be considered if other treatments fail, though evidence is Grade C with limited sample sizes 3

Cyclosporine A oral therapy for refractory cases (Grade C evidence, not FDA-approved for IC/BPS) 2, 3

Intradetrusor botulinum toxin A injections may be beneficial, but patients must accept the possibility of requiring intermittent self-catheterization post-treatment 2, 3

Major surgery (substitution cystoplasty or urinary diversion) should be reserved only for carefully selected patients with severe, unremitting symptoms who have failed all other treatment options 5

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Pain Management Throughout Treatment

Initiate and maintain multimodal pain management approaches throughout treatment, with non-opioid alternatives strongly preferred due to the chronic nature of IC/BPS. 2, 3

• Pain management alone is insufficient—underlying bladder symptoms must also be addressed 2, 3
• If pain management is inadequate, refer to pain specialists 2

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Treatments That Should NEVER Be Offered

• Long-term oral antibiotics: No benefit over placebo and risk antibiotic resistance 3
• Intravesical BCG: No efficacy with potentially life-threatening adverse events 3
• Intravesical resiniferatoxin: No significant benefit with high adverse event rates 3
• High-pressure, long-duration hydrodistension: Increases risk of bladder rupture and sepsis 3
• Systemic long-term glucocorticoids: Serious adverse events outweigh minimal benefits 3

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Critical Pitfalls to Avoid

• Never prescribe pelvic floor strengthening exercises—only relaxation techniques should be used, as strengthening worsens symptoms 2, 3, 5
• Document baseline symptoms using validated tools (Genitourinary Pain Index or Interstitial Cystitis Symptom Index) to measure treatment effects 2
• Educate patients that IC/BPS is a chronic condition with periods of flares and remissions requiring long-term management 2, 3, 5
• Set realistic expectations: treatment efficacy for any individual is unpredictable, and multiple therapeutic options may need to be tried before adequate symptom control is achieved 3, 5
• Discontinue ineffective treatments after an appropriate trial period rather than continuing indefinitely 5
• Ensure regular ophthalmologic examinations for patients using pentosan polysulfate 2, 3

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Special Considerations for Male Patients

IC/BPS should be strongly considered in men whose pain is perceived to be related to the bladder. 1

• Early symptoms may begin with mild dysuria or urinary urgency, progressing to severe voiding frequency, nocturia, and suprapubic pain 1
• Some men meet criteria for both IC/BPS and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) 1, 3
• In such cases, treatment can include established IC/BPS therapies plus therapies more specific to CP/CPPS 1, 3