Interstitial Cystitis/Painful Bladder Syndrome

What is Interstitial Cystitis/Painful Bladder Syndrome?

Interstitial cystitis (IC), also known as painful bladder syndrome or bladder pain syndrome (BPS), is a chronic condition that causes ongoing bladder pain, pressure, and discomfort alongside urinary urgency and frequent urination. Unlike bacterial cystitis or a standard urinary tract infection, IC/PBS is not caused by bacteria and does not respond to antibiotics.

The condition remains poorly understood. Despite decades of research, there is still no definitive answer to what causes it, no reliable diagnostic test, and no cure. That said, most people with IC/PBS can find meaningful relief through a combination of lifestyle changes, medications, and other treatments—though it often takes patience and trial and error to find the right approach.

An estimated 400,000 people in the UK live with IC/PBS. About 90% are women, though men can also be affected—in men, the condition is sometimes initially diagnosed as chronic prostatitis before IC/PBS is considered 1.

Common Symptoms

IC/PBS symptoms vary considerably from person to person, and even within the same person over time. Some people have mild, manageable discomfort; others experience severe, debilitating pain that dominates their daily lives.

The core symptoms include:

• Bladder pain or pressure – This often worsens as the bladder fills and improves (at least temporarily) after urination. Pain may be felt in the lower abdomen, pelvis, or perineum. Women sometimes experience vaginal pain, while men may report discomfort in the scrotum, testicles, or penis.

• Urinary urgency – A sudden, intense need to urinate that can feel impossible to ignore. Some people describe it as a constant sensation that something is wrong in the bladder.

• Urinary frequency – Going to the toilet far more often than normal. In severe cases, this might mean urinating 40, 50, or even 60 times a day. Night-time urination (nocturia) is common and disrupts sleep, leading to chronic fatigue.

• Pain during intercourse – Many people with IC/PBS find that sexual activity triggers or worsens their symptoms, which can strain intimate relationships.

• Bladder spasms – Sudden, intense cramping sensations in the bladder area.

One of the frustrating aspects of IC/PBS is its unpredictability. Symptoms tend to flare and then improve, often without any obvious reason. Many people notice that certain triggers—stress, specific foods, menstruation, physical activity, or even tight clothing—can set off a flare.

What Causes IC/PBS?

Nobody knows for certain what causes IC/PBS, though researchers have proposed several theories 2.

Damaged bladder lining: The most widely accepted theory involves a defect in the glycosaminoglycan (GAG) layer, which normally protects the bladder wall. When this protective coating breaks down, irritating substances in urine may penetrate the bladder tissue, causing inflammation and pain. This is sometimes called “leaky bladder” theory.

Mast cell activation: Mast cells in the bladder wall release histamine and other inflammatory chemicals. In IC/PBS, these cells may be overactive, perpetuating inflammation even without an obvious trigger.

Nerve dysfunction: The nerves in the bladder may become hypersensitive, interpreting normal bladder filling as painful. This nerve sensitisation might explain why the condition can be so persistent—once the nervous system learns to interpret normal sensations as pain, it can be difficult to “unlearn” this response.

Autoimmune factors: Some researchers believe IC/PBS may involve the immune system attacking bladder tissue, though the evidence for this remains inconclusive.

Pelvic floor dysfunction: Many people with IC/PBS also have tight, tender pelvic floor muscles. Whether this causes or results from bladder pain is unclear, but addressing pelvic floor dysfunction often helps symptoms.

IC/PBS may also share underlying mechanisms with other chronic pain conditions like fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome. Many people with IC/PBS have one or more of these conditions as well.

Getting a Diagnosis

There is no single test that confirms IC/PBS. Diagnosis is based on symptoms and ruling out other conditions that could explain them—a process that can take months or even years.

Your doctor will likely start with:

• Medical history – Questions about your symptoms, when they started, what makes them better or worse, and how they affect your daily life.

• Urine tests – To rule out urinary tract infection or other problems. A urine culture must be negative to diagnose IC/PBS.

• Physical examination – Including a pelvic examination for women or prostate examination for men.

If initial tests don’t explain your symptoms, you may be referred to a urologist for further investigation:

• Cystoscopy – A thin camera inserted into the bladder through the urethra. This allows the doctor to examine the bladder lining and look for characteristic findings like Hunner’s lesions (inflammatory patches) or glomerulations (pinpoint bleeding spots).

• Hydrodistension – The bladder is filled with fluid under anaesthesia. This can help with diagnosis and sometimes provides temporary symptom relief.

• Urodynamic tests – Measure how well the bladder fills and empties.

Other conditions that need to be ruled out include overactive bladder, bladder cancer, endometriosis (in women), and urethral stricture or prostate problems (in men) 3.

The diagnostic process can be frustrating. It is not uncommon for people with IC/PBS to see multiple doctors over several years before getting a diagnosis. If your symptoms are being dismissed or attributed to anxiety, consider seeking a second opinion from a specialist with experience in bladder pain conditions.

Treatment Options

IC/PBS cannot be cured, but many treatments can reduce symptoms and improve quality of life. Most people need a combination of approaches, and finding the right mix often takes time.

Lifestyle and Dietary Changes

These are usually the first line of treatment and can make a significant difference for many people.

Diet modification is one of the most effective strategies. Common dietary triggers include caffeine, alcohol, citrus fruits, tomatoes, artificial sweeteners, spicy foods, and carbonated drinks. An elimination diet—removing potential triggers for a few weeks, then reintroducing them one at a time—helps identify your personal triggers. Not everyone has the same triggers, and some people have none.

Fluid intake matters too. Drinking too little concentrates the urine, which may irritate the bladder. But drinking too much means more frequent urination. Aim for about 1.5 to 2 litres of water per day, spread throughout the day.

Stress management helps because stress commonly triggers flares. Relaxation techniques, meditation, gentle yoga, or cognitive behavioural therapy may all be useful. This is not because IC/PBS is “all in your head”—it is a real physical condition—but because the nervous system plays a role in pain perception.

Bladder training involves gradually extending the time between toilet visits to increase bladder capacity and reduce frequency. This works best for people whose main problem is frequency rather than pain.

Medications

Several medications can help manage IC/PBS symptoms:

Pentosan polysulfate sodium (Elmiron) is the only oral medication specifically approved for IC/PBS. It is thought to help restore the bladder’s protective lining. The medication takes three to six months to work, and recent concerns about potential eye complications with long-term use mean regular eye examinations are recommended.

Amitriptyline is a tricyclic antidepressant that, at low doses, can reduce bladder pain, decrease urinary frequency, and improve sleep. It is one of the most commonly prescribed medications for IC/PBS.

Antihistamines like hydroxyzine may help people whose symptoms involve mast cell activation.

Gabapentin or pregabalin can help when nerve sensitisation contributes to pain.

Anti-inflammatory drugs may provide temporary relief during flares, though they are not suitable for long-term use.

Bladder Instillations

Bladder instillations involve inserting a catheter to deliver medication directly into the bladder. This can be done in a clinic or, with training, at home.

Common instillation solutions include:

• DMSO (dimethyl sulfoxide) – Reduces inflammation. This is the only FDA-approved bladder instillation for IC/PBS.

• Heparin – May help restore the bladder lining.

• Lidocaine – Provides local anaesthesia to reduce pain.

• Hyaluronic acid – Aims to repair the damaged GAG layer. Products like Cystistat, iAluril, and Hyacyst are used for this purpose. Evidence on effectiveness is mixed, but some people find them helpful 4.

Instillations are often given weekly initially, then less frequently as maintenance.

Physical Therapy

Pelvic floor physical therapy with a specialist trained in IC/PBS can be highly effective, particularly for people with pelvic floor muscle tension. Treatment may include manual therapy, trigger point release, stretching, and relaxation techniques.

In fact, research suggests that pelvic floor physical therapy is one of the most effective treatments for IC/PBS—yet it is often underused because not all areas have specialists available 5.

Procedures for Severe Cases

When other treatments have not worked, additional options include:

Sacral neuromodulation – A device implanted near the sacral nerves sends electrical impulses to modulate bladder function. This can reduce pain and urgency in some patients.

Botulinum toxin injections – Botox injected into the bladder muscle can reduce bladder spasms and urgency.

Hydrodistension – Stretching the bladder under anaesthesia provides temporary relief for some people.

Fulguration or laser treatment – For patients with Hunner’s lesions, destroying these lesions can significantly reduce symptoms.

Surgical options like bladder augmentation or urinary diversion are reserved for the most severe, treatment-resistant cases and are rarely necessary.

Living with IC/PBS

IC/PBS is a chronic condition, and learning to manage it is an ongoing process. Here are some practical strategies:

Know your triggers. Keep a diary of symptoms, foods, activities, and stress levels to identify patterns. Over time, you will learn what sets off your flares.

Plan ahead. Know where toilets are located when you go out. The COB Foundation and similar organisations offer “Can’t Wait” cards that explain your need for urgent toilet access.

Communicate with others. IC/PBS is often invisible to others, which can lead to misunderstandings. Explaining your condition to partners, family, and employers can help them understand your needs and limitations.

Take care of your mental health. Living with chronic pain and frequent toilet visits is exhausting and can lead to anxiety and depression. Counselling or therapy can help, and there is no shame in seeking support.

Connect with others who understand. Support groups and online forums allow you to share experiences and learn from others facing similar challenges. Sometimes just knowing you are not alone makes a significant difference.

Work with your healthcare team. IC/PBS management often requires adjusting treatment over time. Build a relationship with a urologist or urogynecologist experienced in bladder pain conditions, and do not hesitate to advocate for yourself if you feel your concerns are not being taken seriously.

When to Seek Medical Help

If you have bladder pain or discomfort that has lasted more than six weeks, particularly if accompanied by urinary frequency or urgency, see your GP. While IC/PBS can be difficult to diagnose, getting an early evaluation means ruling out other causes and starting appropriate management sooner.

Seek prompt medical attention for:

• Blood in your urine (hematuria)
• Fever or signs of infection
• Severe pain unresponsive to your usual strategies
• Significant changes in urination patterns

Even with established IC/PBS, new or changing symptoms warrant reassessment—other conditions can develop alongside IC/PBS and should not be assumed to be part of the same problem.

Looking Ahead

Research into IC/PBS continues. Scientists are investigating the role of the bladder microbiome, new biomarkers for diagnosis, and novel treatments including regenerative medicine approaches and targeted therapies based on better understanding of the condition’s underlying mechanisms.

In the meantime, most people with IC/PBS can achieve meaningful improvement in their symptoms with the treatments currently available—even if a complete cure remains elusive. The key is patience, persistence, and a willingness to try different approaches until you find what works for you.

References

1. Hanno PM, et al. (2010). AUA guideline for the diagnosis and treatment of interstitial cystitis/bladder pain syndrome. Journal of Urology, 185(6): 2162-70. PubMed

2. Davis NF, et al. (2014). Interstitial cystitis/painful bladder syndrome: epidemiology, pathophysiology and evidence-based treatment options. European Journal of Obstetrics & Gynecology, 175: 30-37. PubMed

3. NHS (2022). Interstitial cystitis. NHS website

4. Madersbacher H, et al. (2016). GAG layer replenishment therapy for chronic forms of cystitis with intravesical glycosaminoglycans: a review. Neurourology and Urodynamics, 35(5): 549-554. PubMed

5. Fitzgerald MP, et al. (2012). Randomized multicenter clinical trial of myofascial physical therapy in women with interstitial cystitis/painful bladder syndrome and pelvic floor tenderness. Journal of Urology, 187(6): 2113-2118. PubMed