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Frequently Asked Question
What is IC / PBS?

Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.

Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC / PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

In IC / PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding caused by recurrent irritation) often appear on the bladder wall. Hunner's ulcers are present in 10 percent of patients with IC. Some people with IC / PBS find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC / PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia).

What causes IC?

Some of the symptoms of IC / PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC / PBS. Furthermore, patients with IC / PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC / PBS and to find effective treatments.

In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments

How is IC / PBS diagnosed?

Because symptoms are similar to those of other disorders of the urinary bladder and because there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC / PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

The diagnosis of IC / PBS in the general population is based on

  • presence of pain related to the bladder, usually accompanied by frequency and urgency


  • absence of other diseases that could cause the symptoms
Are there any special concerns?

Cancer

There is no evidence that IC / PBS increases the risk of bladder cancer.

Pregnancy

Researchers have little information about pregnancy and IC / PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC / PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.

Coping

The emotional support of family, friends, and other people with IC / PBS is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. See the Interstitial Cystitis Association of America's website under "Support Groups" to find a group near you.

How does the urinary system work?

Urination, or voiding, is a complex activity. The bladder is a balloon-like organ that lies in the lowest part of the abdomen. The bladder stores urine, then releases it through the urethra, the canal that carries urine to the outside of the body. Controlling this activity involves nerves, muscles, the spinal cord, and the brain.

The bladder is composed of two types of muscles: the detrusor, a muscular sac that stores urine and squeezes to empty; and the sphincter, a circular group of muscles at the bottom or neck of the bladder that automatically stay contracted to hold the urine in and automatically relax when the detrusor contracts to let the urine into the urethra. A third group of muscles below the bladder (pelvic floor muscles) can contract to keep urine back.

A baby’s bladder fills to a set point, then automatically contracts and empties. As the child gets older, the nervous system matures. The child’s brain begins to get messages from the filling bladder and begins to send messages to the bladder to keep it from automatically emptying until the child decides it is the time and place to void.

What causes nighttime incontinence?

After age 5, wetting at night—often called bedwetting or sleepwetting—is more common than daytime wetting. Experts do not know what causes nighttime incontinence. Young people who experience nighttime wetting are usually physically and emotionally normal. Most cases probably result from a mix of factors including slower physical development, an overproduction of urine at night, a lack of ability to recognize bladder filling when asleep, and, infrequently, anxiety. For many, there is a strong family history of bedwetting, suggesting an inherited factor.

Slower Physical Development

Between the ages of 5 and 10, bedwetting may be the result of a small bladder capacity, long sleeping periods, and underdevelopment of the body’s alarms that signal a full or emptying bladder. This form of incontinence will fade away as the bladder grows and the natural alarms become operational.

Excessive Output of Urine During Sleep

Normally, the body produces a hormone that can slow the production of urine. This hormone is called antidiuretic hormone, or ADH. The body normally produces more ADH at night so that the need to urinate is lower. If the body doesn’t produce enough ADH at night, the production of urine may not be slowed down, leading to bladder overfilling. If a child does not sense the bladder filling and awaken to urinate, then wetting will occur.

Anxiety

Experts suggest that anxiety-causing events occurring in the lives of children ages 2 to 4 might lead to incontinence before the child achieves total bladder control. Anxiety experienced after age 4 might lead to wetting after the child has been dry for a period of 6 months or more. Such events include angry parents, unfamiliar social situations, and overwhelming family events such as the birth of a brother or sister.

Incontinence itself is an anxiety-causing event. Strong bladder contractions leading to leakage in the daytime can cause embarrassment and anxiety that lead to wetting at night.

Genetics

Certain inherited genes appear to contribute to incontinence. In 1995, Swedish researchers announced they had found a site on human chromosome 13 that is responsible, at least in part, for nighttime wetting. If both parents were bedwetters, a child has an 80 percent chance of also being a bedwetter. Experts believe that other, undetermined genes also may be involved in incontinence.

Obstructive Sleep Apnea

Nighttime incontinence may be one sign of another condition called obstructive sleep apnea, in which the child’s breathing is interrupted during sleep, often because of inflamed or enlarged tonsils or adenoids. Other symptoms of this condition include snoring, mouth breathing, frequent ear and sinus infections, sore throat, choking, and daytime drowsiness. In some cases, successful treatment of this breathing disorder may also resolve the associated nighttime incontinence.

Structural Problems

Finally, a small number of cases of incontinence are caused by physical problems in the urinary system in children. Rarely, a blocked bladder or urethra may cause the bladder to overfill and leak. Nerve damage associated with the birth defect spina bifida can cause incontinence. In these cases, the incontinence can appear as a constant dribbling of urine.

What causes daytime incontinence?

Daytime incontinence that is not associated with urinary infection or anatomic abnormalities is less common than nighttime incontinence and tends to disappear much earlier than the nighttime versions. One possible cause of daytime incontinence is an overactive bladder. Many children with daytime incontinence have abnormal elimination habits, the most common being infrequent voiding and constipation.

An Overactive Bladder

Muscles surrounding the urethra—the tube that takes urine away from the bladder—have the job of keeping the passage closed, preventing urine from passing out of the body. If the bladder contracts strongly and without warning, the muscles surrounding the urethra may not be able to keep urine from passing. This often happens as a consequence of urinary tract infection (UTI) and is more common in girls.

Infrequent Voiding

Infrequent voiding refers to a child’s voluntarily holding urine for prolonged intervals. For example, a child may not want to use the toilets at school or may not want to interrupt enjoyable activities, so he or she ignores the body’s signal of a full bladder. In these cases, the bladder can overfill and leak urine. In addition, these children often develop UTIs, leading to an irritable or overactive bladder.

Other Causes

Some of the same factors that contribute to nighttime incontinence may act together with infrequent voiding to produce daytime incontinence. These factors include

  • small bladder capacity

  • structural problems

  • anxiety-causing events

  • pressure from a hard bowel movement (constipation)

  • drinks or foods that contain caffeine, which increases urine output and may also cause spasms of the bladder muscle, or other ingredients to which the child may have an allergic reaction, such as chocolate or artificial coloring

Sometimes overly strenuous toilet training may make the child unable to relax the sphincter and the pelvic floor to completely empty the bladder. Retaining urine, or incomplete emptying, sets the stage for UTIs.

What is a urinary tract infection (UTI)?

A UTI is an infection anywhere in the urinary tract Your urinary tract includes the organs that collect and store urine and release it from your body. They are the

  • kidneys
  • ureters
  • bladder
  • prostate (in men)
  • urethra

What causes a UTI?

Usually, a UTI is caused by bacteria that can also live in the digestive tract, in the vagina, or around the urethra, which is at the entrance to the urinary tract. Most often these bacteria enter the urethra and travel to the bladder and kidneys. Usually, your body removes the bacteria, and you have no symptoms. However, some people—including women and older people of both sexes—seem to be prone to infection.

When should I see my doctor?

You should see your doctor if you have any of these signs or symptoms:

  • burning feeling when you urinate
  • frequent or intense urges to urinate, even when you have little urine to pass
  • pain in your back or lower abdomen
  • cloudy, dark, bloody, or unusual-smelling urine
  • fever or chills

Women are more likely to get UTIs than men. When men get UTIs, however, they’re often serious and hard to treat. UTIs can be especially dangerous for older people and pregnant women, as well as for those with diabetes and those who have difficulty urinating.

 

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