Bladder pain syndrome (BPS), also referred to as interstitial cystitis (IC), is a chronic bladder health condition that affects over 2 million people. BPS/IC is 2 to 3 times more common in women than in men, although it is believed that the number of men may be higher because some men diagnosed with prostatitis (swelling of the gland that makes semen in men) may have BPS/IC.
Misdiagnosis is not uncommon. Oftentimes, urinary tract infections are thought to be the culprit, since the symptoms closely resemble BPS/IC, and patients may temporarily feel better on antibiotics due to their mild numbing effect on the bladder. However, many of these patients have negative urine cultures and continue to experience recurring symptoms once antibiotics are stopped. Other conditions that are often misdiagnosed before identifying BPS/IC include endometriosis, chronic pelvic pain, and refractory overactive bladder.
Causes
Interstitial cystitis is a disease of the bladder where the inner lining, called the glycosaminoglycan (GAG) layer, becomes leaky. Experts do not know exactly what causes BPS/IC, but there are many theories, such as:
A defect in the bladder tissue.
A specific type of inflammatory cell, called a mast cell, that releases histamine.
Changes in the nerves that carry bladder sensations.
The body’s immune system attacks the bladder.
Painful bladder syndrome can also result when the walls of the bladder become stiff or irritated, reducing the amount of urine the bladder can hold and increasing discomfort or urgency.
Symptoms
The symptoms of BPS/IC vary for each patient, but the most common sign is pain, often with pressure, as the bladder gets full, and in other areas such as the urethra, lower abdomen, lower back, or the pelvic or perineal area. Common symptoms include intense pain, tenderness, or pressure in the bladder and surrounding area, urinary urgency and/or frequency, and, in some patients, urgent incontinence. Symptoms can range from mild to severe and may fluctuate or worsen over time.
Certain lifestyle habits can make symptoms worse. For some patients, symptoms are made worse by certain foods or drinks. Microscopically, the leaky GAG layer allows potassium to irritate the bladder nerves, which can lead to bladder muscle contraction, frequency, urgency, and pain. Think of it like a sunburn: the nerves are very sensitive, so even light touch can cause pain. Physical or mental stress may also exacerbate symptoms.
For women, symptoms may vary with their menstrual cycle or can result in painful intercourse, and for men, this can result in painful ejaculation.
Diagnosis
To diagnose, your urologist will first decide whether the symptoms are typical of BPS/IC. Your urologist will take a detailed medical history and perform a physical exam and urine tests for evaluation to rule out other conditions that might be causing the symptoms.
In most cases, painful bladder syndrome is a diagnosis of exclusion, meaning your doctor rules out other possible causes such as urinary tract infections, bladder cancer, and, in women, endometriosis.
Your urologist may discuss and recommend further diagnostic testing if IC is suspected. Testing may include:
Potassium Sensitivity Test (PST) can be performed in the office, and recovery time is usually quick. A potassium solution and water are placed into the bladder one at a time, and pain/urgency scores are compared. A person with IC feels more pain/urgency with the potassium solution than with the water, but patients with normal bladders cannot tell the difference between the two solutions. This test is diagnostic for interstitial cystitis. Learn more.
Cystoscopy with hydrodistention is performed under anesthesia. A scope or tube is inserted into the bladder. The bladder is stretched to see the pinpoint hemorrhages (bleeds) on the bladder wall that are the hallmark of this disease. A biopsy of the bladder wall may be necessary at this time to rule out bladder cancer and to help in the diagnosis of IC. Learn more.
Urinalysis, urine culture, and urodynamic testing may also be performed to assess bladder function, detect infection, and measure how much urine the bladder can hold and how quickly it empties.
Urinalysis – Urinalysis involves examining a patient’s urine under a microscope to look for signs of infection or other disease.
Urine culture – In a urine culture, urine is kept under conditions designed to allow any bacteria in the urine to grow. Doctors can then identify and treat the bacteria.
Urodynamic testing – Urodynamic tests are tests designed to examine the function of the urinary tract. These tests can measure the amount of urine the bladder holds, how fast urine flows when released, and more.
Treatment
No single treatment works for everyone, and no treatment is “the best.” Treatments are individualized for every patient based on his or her symptoms. The usual course is multimodality therapy or using a combination of medications and other treatments until the patient gets good relief of their symptom(s).
The following two treatments are currently approved by the United States Food and Drug Administration (FDA) to treat BPS/IC:
Medication: Oral pentosan polysulfate sodium (Elmiron) is taken one capsule three times a day on an empty stomach, and it may take several months to be effective. Only about 6% of the medication reaches the bladder, so some doctors may adjust the dose until symptoms are controlled.
Bladder instillations: Dimethyl sulfoxide (DMSO) is instilled into the bladder through a catheter. Other instillation treatments may include a combination of lidocaine, heparin, and bicarbonate to soothe the bladder lining and neutralize acidic urine. These installations are typically performed under local anesthesia and may significantly improve pain and urgency. Some urologists combine DMSO with medications such as heparin or steroids to decrease inflammation.
Various other treatments are used for BPS/IC, though they are not specifically approved by the FDA.
Antihistamine: It is thought that some patients have too much histamine in the bladder and that histamine promotes pain and other symptoms. Therefore, an antihistamine, such as hydroxyzine, can help treat BPS/IC.
Antidepressants: Amitriptyline, an antidepressant, has many effects that may improve symptoms. It has antihistamine effects, decreases bladder spasms, and slows the nerves that carry pain messages.
Heparin has anti-inflammatory and surface protective actions and may help temporarily “repair” the bladder layer.
Overactive bladder medications: These may be used to reduce frequency and urgency while the bladder heals.
Pain management: Many patients may not respond to any of the above BPS/IC therapies, but can still have significant improvement in their quality of life with adequate pain management. Pain management can include non-steroidal anti-inflammatory drugs, moderate-strength opiates, stronger long-acting opiates, nerve blocks, acupuncture, and other non-drug therapies.
Long-term, multimodality therapy layering treatments may be utilized until symptoms improve, and treatments are slowly tapered once stable relief is achieved.
Your physician may suggest following a strict diet for 3 weeks, avoiding alcohol, citrus, tomato and tomato-based products, chocolate, caffeinated coffee or tea (decaffeinated only), sodas, sparkling drinks, tap water, and certain bottled waters with added potassium. Foods are then reintroduced one at a time to monitor for symptom flares.
Prevention
No specific behaviors are known to increase the risk of BPS/IC; however, having a family member with BPS/IC may increase your risk. Some people may be more likely to develop BPS/IC after an injury to the bladder, such as an infection.
At this time, there is no evidence that stress causes BPS/IC; however, if a person has BPS/IC, physical or mental stress can make the symptoms worse.
Some patients may find that certain foods or beverages can trigger or worsen their symptoms, so paying attention to dietary triggers can help manage recurrence.
At Georgia Urology, we are committed to conducting safe, impactful research studies that help shape the future of medicine. Every team member, whether directly involved in studies or supporting our mission in other ways, plays a vital role in advancing patient care and the future of urology.
Dr. Jeffrey G. Proctor, recently named one of Georgia’s best urologists in Castle Connolly’s prestigious Top Doctors listings, is currently conducting two research studies to get bladder installation therapy FDA-approved. One study is testing a combination of components that, individually, are FDA-approved but together may be more effective. The other study involves a two-week treatment schedule with up to six installations, depending on symptoms.