pAINFUL BLADDER SYNDROME
What is the definition of Painful Bladder Syndrome?
Painful Bladder Syndrome (PBS) is a chronic and painful inflammation of the bladder wall, not caused by bacteria, and is a long-term disease. It is unrelieved by antibiotics. 10% of patients diagnosed are male but the problem occurs primarily in women between the ages of 20-40 years. Because the condition is quite rare (8/100,000), patients often see more than one doctor to obtain the diagnosis.
Severe suprapubic pain, chronic day and night frequency, urgency, pelvic pressure, temporary relief during voiding.
THIS IS A REAL DISEASE, NOT A PSYCHOLOGICAL DISORDER!
WHAT CAUSES PBS?
Some of the symptoms of PBS resemble those of bacterial infection, but medical tests reveal no bacteria in the urine of people with PBS. Furthermore, people with PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of PBS and to find effective treatments.
Many women with PBS have other conditions such as irritable bowel syndrome and fibromyalgia. Scientists believe PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.
HOW IS PBS DIAGNOSED?
Because symptoms are similar to those of other disorders of the bladder and there is no definitive test to identify PBS, doctors must rule out other treatable conditions before considering a diagnosis of PBS. The most common of these other diseases in both sexes are urinary tract infections and bladder cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome. PBS is not associated with any increased risk of developing cancer.
The diagnosis of PBS in general is based on the:
- presence of pain related to the bladder, usually accompanied by frequency and urgency
- absence of other diseases that could cause the symptoms
- Urinalysis and Urine Culture: Examining urine with a microscope and culturing the urine can detect urinary tract infections that may cause symptoms similar to PBS. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of PBS (but urinary infection should be excluded before the diagnosis of PBS is made).
- Cystoscopy with cystodistension and refill examination. Cystoscopy is an examination of the bladder under general anaesthesia. In suspected PBS, the bladder is distended to its maximum capacity under anaesthesia, then the fluid is retained in the bladder for about 5 minutes; such stretching often improves bladder capacity. After cystodistension, about 200mls fluid is reinserted so the bladder can be re-examined (“Refill examination”). During Refill Examination, small bladder pinpoint haemorrhages, or splits in the wall of the lining (called Hunner’s Ulcers) may be seen. Biopsy may be indicated, to further confirm the diagnosis.
WHAT ARE THE TREATMENTS FOR PBS?
Scientists have not yet found a cure for PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear with a change in diet or treatments or without explanation. Even when symptoms disappear, they may return after days, weeks, months or years. Scientists do not know why. Because the causes of IC/PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of treatments. As researchers learn more about PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.
Bladder Distention: Many people with PBS have noted an improvement in symptoms after a bladder distention has been done to diagnose the condition. In many cases, the procedure is used as both a diagnostic test and initial therapy. Researchers are not sure why distention helps, but believe it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. If Hunner’s ulcers are seen (splitting of the mucosal wall) then diathermy to these areas often helps.
Bladder Instillation: During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for about 30 minutes, before being emptied. The first drug approved for bladder instillation is dimethyl sulfoxide (DMSO). DMSO treatment involves inserting a catheter into the urethra and bladder. DMSO is passed through the catheter into the bladder, where it is retained for about 30 minutes before being expelled. Treatments are given every week for at least 6 weeks, but up to 12 weeks, and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first treatment. About 80% of patients obtain 80% symptomatic benefit.
DMSO works in several ways. It reduces inflammation and blocks pain. It may also prevent muscle contractions that cause pain, frequency, and urgency. A bothersome but insignificant side effect of DMSO treatments is a garlic-like taste and odour on the breath and skin that may last up to 24 hours after treatment.
Oral Drugs: Pentosan Polysulfate Sodium (Elmiron), first oral drug developed for PBS. Approved for use in 1996. In clinical trials, 30% of patients symptoms improved. Doctors do not know exactly how the drug works, but one theory is that it may repair defects that might have developed in the lining of the bladder. Recommended dose is Elmiron 100mg, 3 times a day. Patients may not feel relief from PBS pain for the first 2 to 4 months. A decrease in urinary frequency may take up to 6 months. Elmiron’s side effects are limited to minor gastrointestinal discomfort.
Other Oral Medications: Many people have experienced improvement in their urinary symptoms by taking Imipramine or Amitryptilline in low doses, to help reduce pain, increase bladder capacity, and decrease frequency and nocturia. Some people may not be able to take it because it makes them too tired during the day.
Electrical Nerve Stimulation: Mild electrical pulses can be used to stimulate the nerves to the bladder through the skin. The method of delivering
impulses through the skin is called transcutaneous electrical nerve stimulation (TENS). With TENS, mild electric pulses enter the body for minutes to hours, two or more times a day either through wires placed on the lower back or just above the pubic area between the navel and the pubic hair or through special devices inserted into the vagina in women or into the rectum in men. Although scientists do not know exactly how TENS relieves pelvic pain, it has been suggested that the electrical pulses may increase blood flow to the bladder, strengthening pelvic muscles that help control the bladder, or trigger the release of substances that block pain.
TENS is relatively inexpensive and allows people with PBS to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. Improvement is usually apparent in 3 to 4 months.
Diet: No scientific evidence links diet to PBS but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods, may contribute to bladder irritation and inflammation. Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person’s symptoms. However, maintaining a varied, well-balanced diet is important. An oxalate free diet helps some patients (see website: http://www.lowoxalate.info/ )
Bladder Training: People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void to empty their bladder at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, they try to lengthen the time between scheduled voids. A diary in which to record voiding times is helpful in keeping track of progress.
Surgery: Advanced surgery (beyond bladder distension with diathermy) should be considered only if all available treatments have failed and the pain is disabling. Many approaches and techniques are used, each of which has advantages and complications that should be discussed with a surgeon. A doctor may recommend consulting another surgeon for a second opinion before taking this step. Most surgeons are reluctant to operate because some people still have symptoms after surgery.
- Find out more about Interstitial Cystitis/Painful Bladder Syndrome here
- Information sheets on Bladder retraining and Pelvic Floor Muscle Training
- International Painful Bladder Foundation
- Understanding the Interstitial Cystitis/Painful Bladder Syndrome Diet