• IC/PBS is an inflammatory disease of the bladder that can cause ulceration and bleeding of the bladder’s lining, leading to scarring and stiffening of the bladder.
• The symptoms of IC/PBS are
○ pelvic or bladder pain,
○ frequent urination, and
○ urinary urgency.
• IC/PBS has a variable course, meaning that symptoms can appear and disappear over time. Moreover, the intensity of symptoms varies among individuals and even within the same individual over time.
• The cause of IC/PBS is unknown, but abnormalities in the leakiness or structure of the lining of the bladder may play a role in the development of IC/PBS.
• Health care professionals make the diagnosis of IC/PBS based on the typical symptoms and the elimination of other conditions that may be responsible for the signs.
• Treatment for IC/PBS most commonly utilizes heparinoid drugs to help restore the bladder lining and other oral medications. Bladder distension and intravesical drug therapy are other treatments that may provide relief in IC/PBS.
The urinary system consists of the kidneys, ureters, bladder, and urethra. The kidneys, a pair of purplish-brown organs, are located below the ribs toward the middle of the back. The kidneys remove water and waste from the blood in the form of urine, keeping a stable balance of salts and other substances. The kidneys also produce erythropoietin, a hormone that stimulates the formation of red blood cells. Narrow tubes called ureters carry urine from the kidneys to the bladder, a triangle-shaped, muscular chamber in the lower abdomen. Like a balloon, the bladder’s muscular, elastic walls relax and expand to store urine and contract and flatten when urine empties through the urethra. The healthy adult bladder can save about 1 ½ cups of urine.
Adults urinate about 1½ quarts of urine each day. The amount of urine varies depending on the fluids and foods a person consumes. The volume formed at night is nearly half that developed during the day.
Normal urine contains fluids, salts (for example, sodium and potassium) and waste products, but it is free of bacteria, viruses, and fungi. The wall of the bladder is isolated from urine and toxic substances by a coating on the inside lining of the bladder that discourages bacteria from attaching and growing on the bladder wall.
Interstitial cystitis (IC) refers to a clinical syndrome characterized by symptoms including chronic urinary urgency (feeling the need to urinate immediately) and frequency (frequent urination). Pelvic pain may or may not be present. Since the wall of the bladder is inflamed, this can lead to pain and soreness in the bladder and pelvic areas.
Interstitial cystitis (IC), also referred to as painful bladder syndrome (PBS), is a condition that causes bladder pain, bladder pressure, chronic urinary urgency (feeling the need to urinate immediately), and frequency (frequent urination). The symptoms of this condition vary among individuals from mild to severe and may vary with time in the same individual. The term cystitis refers to any inflammation of the bladder.
In contrast to bacterial cystitis that results from an infection in the bladder, a type of urinary tract infection (UTI), medical researchers haven’t identified an infectious organism in people with interstitial cystitis.
Estimates of the number of people affected by IC/PBS vary widely and are dependent upon the criteria used for diagnosis. Many experts believe that about 3.3 million women in the U.S. (over age 18) may have IC/PBS, as well as 1.6 million men.
Despite a lack of consistency about the diagnosis of IC/PBS, studies agree that most of those affected are women. While individuals of any age may develop IC/PBS, including children, the average age of onset is around 40. Physicians do not consider IC/PBS a hereditary disorder. Still, multiple cases have occurred among some families, prompting an ongoing investigation of the possible role of hereditary factors in the development of IC/PBS.
Observations from cystoscopy (visual examination of the inside of the bladder via a camera) have found that two patterns exist for IC, ulcerative and nonulcerative, depending upon the presence or absence of ulcerations or breaks in the bladder lining. Star-shaped ulcerations in the bladder wall are Hunner’s ulcers. These appear in less than 10% of cases of IC/PBS in the U.S.
Over time, interstitial cystitis can cause physical damage to the bladder wall. Scarring and stiffening of the bladder wall may occur because of the chronic inflammation, leading to a decrease in bladder capacity. Glomerulations (areas of pinpoint bleeding) and small areas of bleeding may appear on the bladder wall.
No one knows what causes IC/PBS, but doctors believe that it is a real physical problem and not a result, symptom, or sign of an emotional issue.
One possible cause of IC/PBS is the disruption of the lining layer of the bladder (known as epithelium) that causes it to become leaky, allowing toxic substances in urine to irritate the bladder wall.
Other possible theories about the cause of IC/PBS include an abnormality of the immune response, such as an autoimmune reaction, the presence of an unidentified infection, or increased nervous system activation in the nerves to the bladder. None of these theories has been conclusively proven to cause IC/PBS.
Because physicians don’t understand the cause of IC/PBS, there are no definite risk factors for developing the condition. However, women are more likely than men to develop IC/PBS.
Some associations with other medical conditions appear with IC/PBS. Women with IC/PBS are more likely to have had frequent urinary tract infections (UTIs) and to have had previous gynecologic surgery than women without IC/PBS. Certain chronic illnesses occur more frequently in people with IC/PBS than in the general population. Examples of these associated illnesses are inflammatory bowel disease, systemic lupus erythematosus, irritable bowel syndrome (IBS), vulvodynia (chronic discomfort in the vulvar area), allergies, endometriosis, and fibromyalgia.
While medical researchers have described each of these conditions in at least some studies to be more common in people with IC/PBS than in the general population, there is no evidence that any of these conditions is the cause of IC/PBS.
The symptoms of IC/PBS vary significantly from one person to another but have some similarities to those of a urinary tract infection. They include
• decreased bladder capacity resulting in frequent urination of smaller amounts of urine day and night referred to as urinary frequency;
• a robust and urgent need to urinate when the need to urinate arises referred to as urinary urgency;
• bladder pain, bladder pressure, and feelings of pressure, pain, and tenderness around the bladder, pelvis, and perineum (the area between the anus and vagina or anus and scrotum) which may increase as the bladder fills and decrease as it empties;
• painful sexual intercourse (dyspareunia); and
• discomfort or pain in the penis and scrotum.
In most women, symptoms usually worsen around the time of their periods. As with many other illnesses, stress may intensify the symptoms, but it does not cause them. The symptoms usually have a slow onset, and urinary frequency is the most common early symptom. As IC/PBS progresses over a few years, cycles of pain (flare-ups or flares) and remissions occur. Pain may be mild or so severe as to be debilitating. Symptoms can vary from day today.
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