Interstitial Cystitis

Name: Interstitial Cystitis
Creator: Dr. Marinos Vasilas

My Clinical Approach

IC/BPS is one of the most misunderstood urological conditions. Many women receive repeated antibiotics for «recurrent urinary infections» while their cultures are negative. Correct diagnosis is typically delayed 5-7 years.

I follow the AUA Guidelines IC/BPS 2022, the ESSIC 2008 criteria and the EAU Chronic Pelvic Pain Guidelines:

Always phenotypic characterisation (UPOINT): Urinary, Psychosocial, Organ-specific, Infection, Neurologic, Tenderness.
Diagnostic cystoscopy + hydrodistension to identify Hunner lesions (radically changes therapy).
Begin from tier 1 & 2 — education, diet, stress management, pelvic floor physiotherapy.
Multimodal approach: drugs + intravesical + psychological support.
Collaboration with gastroenterologist, gynaecologist, pain specialist for comorbidities.
Avoid inappropriate antibiotics and long-term analgesics.

What is IC/BPS

IC/BPS is defined as «discomfort perceived to be related to the bladder, associated with lower urinary tract symptoms such as urgency or frequency, of more than 6 weeks duration, in the absence of infection or other identifiable causes» (AUA).

ESSIC classifies the disease into types 1X-3C based on cystoscopy findings (normal / glomerulations / Hunner) and biopsy (normal / inflammation / thin urothelium / exclusions).

Pathogenesis

Multifactorial — no single cause:

Urothelial dysfunction: defect in the surface GAG (glycosaminoglycan) layer → potassium leak and nerve irritation.
Neurogenic inflammation: mast-cell activation with histamine and TNF-α release.
Central sensitisation: altered CNS pain processing (related to fibromyalgia).
Autoimmune mechanism: anti-urothelial antibodies in a subset.
Pelvic floor dysfunction: muscle spasm, trigger points.
Genetic predisposition, hormonal changes, psychological factors (stress, trauma).

Symptoms & phenotyping

Core symptoms

Pain/pressure that increases with filling and decreases with voiding. Urgency. Frequency (mean 16/24 h, nocturia 4-6).

Associated

Dyspareunia (women), perineal/testicular pain (men), pelvic floor dysfunction, sleep disturbance, depression.

Phenotypes (UPOINT)

6-domain classification: Urinary, Psychosocial, Organ-specific (Hunner), Infection, Neurologic, Tenderness of pelvic floor. Guides individualised therapy.

Diagnosis & cystoscopy

Detailed history + voiding diary

Symptom duration, relationship to bladder filling, dietary triggers, reproductive history. 3-day diary records frequency, volume, pain.

Physical examination

Abdominal palpation, gynaecological / rectal exam, assessment of pelvic floor muscles (levator ani trigger points).

Laboratory tests

Urinalysis + culture (negative). Urine cytology in smokers >40. Hormonal panel if menopause is suspected.

Validated questionnaires

O'Leary-Sant Symptom & Problem Index, PUF Scale, BPIC-SS — quantify severity and monitor response.

Cystoscopy + hydrodistension

Under anaesthesia, distension at 80 cm H2O for 1-2 minutes. Look for: glomerulations (post-emptying), Hunner lesions (10-15%), thin urothelium.

Biopsy

For lesions or to exclude CIS in elderly/smokers. Shows: inflammation, mast-cell infiltration, mucosal fissures.

Differential diagnosis

Cystitis (CIS!), urinary infection, urolithiasis, endometriosis, vaginitis, chronic prostatitis, pelvic neuralgia (pudendal).

Stepped therapy (AUA 2022)

Tier 1: Education & lifestyle

Disease explanation, dietary modification, stress management, relaxation, bladder retraining (timed voiding).

Tier 2: Physiotherapy & oral drugs

Pelvic floor physiotherapy (myofascial release — not Kegels!). Amitriptyline 10-75 mg, hydroxyzine 25-50 mg, pentosan polysulfate (PPS, Elmiron) 100 mg tid, cimetidine.

Tier 3: Intravesical instillations

DMSO 50 ml 50% (RIMSO-50) weekly x6, heparin 40,000 IU, chondroitin/hyaluronic acid (Cystistat, iAluRil), lidocaine + heparin + bicarbonate cocktail for acute pain.

Tier 4: Procedural

Hydrodistension under anaesthesia (transient relief in 60% for 4-6 months). Cauterisation/triamcinolone injection of Hunner lesions — excellent response.

Tier 5: Neuromodulation & systemic

Sacral neuromodulation (InterStim), botulinum toxin A 100-200 U intravesical, cyclosporine A 3 mg/kg/day (50-80% efficacy but toxicity).

Tier 6: Diversion surgery (last resort)

Radical cystectomy with neobladder or ileal conduit. Reserved for end-stage disease after failure of all other options (<1% of patients).

Hunner lesions

Present in 10-15% of patients. Appear as red lesions with central scarring and radiating vessels that bleed with hydrodistension. Histology: marked inflammation with B-lymphocytes and plasma cells.

Treatment of choice: monopolar / Holmium laser cauterisation or triamcinolone injection — symptom relief >75% in most patients for 6-18 months.

Dietary & psychosocial measures

Avoidance diet: coffee, alcohol, citrus, tomato, spicy food, sodas, artificial sweeteners. Trial 4-6 weeks.
Increased water intake: 1.5-2 L/day (urine dilution).
Stress management: cognitive-behavioural therapy, mindfulness, yoga.
Support groups: Interstitial Cystitis Association.
Treat comorbidities: fibromyalgia, IBS, endometriosis, depression.

Prognosis & comorbidities

Chronic, fluctuating course with remissions and flares. ~50% of patients show significant improvement with stepped therapy within 6-12 months. Complete cure is rare. Quality of life is comparable to chronic kidney disease.

Common comorbidities: fibromyalgia (45%), irritable bowel syndrome (38%), chronic fatigue syndrome (25%), endometriosis, depression/anxiety (60%).

Frequently Asked Questions (FAQ)

What is interstitial cystitis?

Interstitial cystitis or bladder pain syndrome (IC/BPS) is a chronic syndrome of bladder pain with urgency and frequency, lasting more than 6 weeks without infection or other obvious cause.

How common is it?

It affects 2.7-6.5% of women and 2-4% of men in the United States. More common in women (~5:1 ratio), peaking in the 4th-5th decade. Frequently coexists with fibromyalgia, irritable bowel syndrome and endometriosis.

What are the symptoms?

Bladder pain or pressure linked to filling and relieved by voiding, urinary urgency, frequency (up to 60+ voids/24 h in severe cases), dyspareunia in women, perineal or testicular pain in men.

How is it diagnosed?

Diagnosis of exclusion. Detailed history + voiding diary + physical examination (pelvic floor muscle palpation). Urinalysis and culture (negative), cytology in smokers. Cystoscopy with hydrodistension: identifies Hunner lesions (10-15%) or glomerulations.

Is there a cure?

No definitive cure. There is, however, a reliable stepped approach (AUA 2022) that achieves significant relief in over 70% of patients: education, diet, physiotherapy, oral medication (amitriptyline, hydroxyzine, pentosan polysulfate), intravesical instillations (DMSO, heparin), neuromodulation.

Which foods should I avoid?

Individual sensitivity varies. The most common triggers are: coffee/tea, alcohol (especially wine), citrus, tomato, spicy foods, sugar/artificial sweeteners, sodas. I recommend a 4-6 week food-symptom diary.

What is the role of Hunner lesions?

Hunner lesions (HL+) are red lesions of the urothelium with central vessels. Present in 10-15% of patients. A biologically distinct disease — they respond excellently to monopolar or laser cauterisation and triamcinolone injection.

When is surgery needed?

Rarely — only for severe disease refractory to all other treatments (final AUA tier 6): radical cystectomy with neobladder or ileal conduit. Before this, always trial sacral neuromodulation or cyclosporine A.