Interstitial Cystitis / Painful Bladder Syndrome

Interstitial cystitis (IC) is a chronic condition causing persistent bladder pain, pressure, and discomfort along with urinary urgency and frequency. Also known as painful bladder syndrome or bladder pain syndrome, IC affects an estimated 400,000 people in the UK, with approximately 90 percent being women. Unlike bacterial cystitis, IC is not caused by infection and does not respond to antibiotics. The condition ranges from mild discomfort to severe, debilitating pain that significantly impacts quality of life.

Symptoms

IC presents with a characteristic triad of bladder pain, urinary urgency, and frequent urination. Pain typically worsens as the bladder fills and may temporarily improve after urination. The location of discomfort varies between individuals but commonly affects the lower abdomen, pelvis, and perineum. Women may experience vaginal pain, while men often report pain in the scrotum, testicles, or penis. Dysuria or burning during urination may also occur.

Urinary frequency can be extreme in severe cases, with some patients needing to urinate up to 60 times daily. Nighttime urination disrupts sleep and leads to chronic fatigue. Many patients experience bladder spasms that create sudden, intense urges. Sexual intercourse frequently triggers or worsens symptoms, and women often report symptom flares around menstruation.

The severity of IC symptoms fluctuates over time. Patients experience periods of remission interspersed with flares triggered by stress, certain foods, hormonal changes, or physical activity. This unpredictable pattern makes daily planning difficult and can lead to social isolation.

Causes

The exact cause of interstitial cystitis remains unknown, though several theories exist. The most widely accepted hypothesis involves a defect in the glycosaminoglycan (GAG) layer that normally protects the bladder lining. When this protective coating breaks down, irritating substances in urine penetrate the bladder wall and trigger inflammation and pain.

Other contributing factors may include autoimmune dysfunction, where the body’s immune system mistakenly attacks bladder tissue. Mast cell activation in the bladder wall releases histamine and other inflammatory chemicals. Nerve dysfunction can cause normal bladder sensations to be interpreted as painful. Some researchers believe IC may share mechanisms with other chronic pain conditions such as fibromyalgia and irritable bowel syndrome.

Risk factors include being female, having fair skin and red hair, and having a history of chronic pain conditions. Chronic prostatitis in men shares many features with IC and may represent the same underlying condition.

Diagnosis

Diagnosing IC requires excluding other conditions that cause similar symptoms. There is no single definitive test for IC, so diagnosis relies on symptom patterns, physical examination, and ruling out alternative causes.

Initial evaluation includes urine analysis and culture to exclude urinary tract infection. A symptom questionnaire helps quantify symptom severity and frequency. Physical examination includes pelvic assessment for women and prostate examination for men. Conditions such as overactive bladder, bacterial cystitis, trigonitis, and bladder cancer must be considered.

Cystoscopy with hydrodistension is often performed under anaesthesia. During this procedure, the bladder is filled with fluid to examine the lining for characteristic findings such as glomerulations (pinpoint bleeding) or Hunner lesions (inflammatory patches). Urodynamic testing measures bladder capacity and function. Potassium sensitivity testing, where potassium solution is instilled into the bladder, may reproduce pain in IC patients but has fallen out of favour due to discomfort.

Treatment

IC treatment aims to reduce symptoms and improve quality of life since there is no cure. Most patients require a combination of approaches tailored to their specific symptoms.

Lifestyle modifications form the foundation of IC management. Identifying and avoiding dietary triggers is essential; common culprits include caffeine, alcohol, citrus fruits, tomatoes, artificial sweeteners, and spicy foods. An elimination diet followed by gradual reintroduction helps identify individual triggers. Stress management through relaxation techniques, meditation, or counselling reduces flares in many patients.

Oral medications include pentosan polysulfate sodium (Elmiron), which helps restore the bladder’s protective lining over several months of treatment. Antihistamines such as hydroxyzine reduce mast cell activation. Tricyclic antidepressants like amitriptyline provide pain relief and reduce urinary frequency. Other options include gabapentin or pregabalin for nerve pain, and nonsteroidal anti-inflammatory drugs for mild symptoms.

Bladder instillations deliver medication directly into the bladder through a catheter. Solutions containing dimethyl sulfoxide (DMSO), heparin, lidocaine, or sodium bicarbonate may reduce inflammation and pain. Treatment typically involves weekly sessions initially, then maintenance instillations as needed.

Physical therapy with a specialist trained in pelvic floor dysfunction addresses the muscle tension and trigger points that often accompany IC. Manual therapy, stretching, and relaxation techniques help reduce pelvic pain and urinary symptoms.

Procedures for refractory IC include sacral neuromodulation, which uses electrical impulses to modulate bladder nerve signals, and botulinum toxin injections into the bladder muscle. Hydrodistension during cystoscopy provides temporary relief for some patients. Fulguration or laser treatment of Hunner lesions can significantly reduce symptoms in patients with this finding.

Living with IC

Managing IC requires developing strategies for daily life. Bladder training helps gradually extend the time between urinations. A voiding diary tracks symptoms, triggers, and patterns. Heat application to the lower abdomen or perineum provides comfort during flares. Wearing loose, comfortable clothing reduces pressure on the bladder area.

Planning ahead makes travel and social activities more manageable. Knowing toilet locations, carrying emergency supplies, and communicating needs to companions reduces anxiety. Connecting with support groups provides emotional support and practical advice from others who understand the condition.

Maintaining intimate relationships requires open communication with partners about symptoms and limitations. Experimenting with positions and timing, using lubricants, and taking prescribed medication before sexual activity can help reduce discomfort.

When to See a Doctor

Seek medical evaluation for persistent pelvic pain, urinary urgency, or frequency lasting more than six weeks. New or worsening symptoms warrant reassessment even with an established IC diagnosis. Contact your doctor immediately for blood in the urine, fever, or signs of urinary tract infection such as cloudy or foul-smelling urine, as these suggest a separate treatable condition.

Regular follow-up with a urologist experienced in IC management optimises long-term outcomes. Treatment plans often need adjustment as symptoms change over time. Mental health support should be considered if IC affects mood, relationships, or quality of life significantly.