Interstitial cystitis (IC) is a chronic disorder that is characterized by irritation or inflammation of the bladder wall. Although the cause of IC is unknown, various theories exist. The condition may be an autoimmune response to a urinary tract infection, or it may occur due to a defect in the bladder. Heredity may play a role in the development of this condition as well.

IC is far more common among women than men. Additional risk factors for IC include age and the presence of other chronic disorders, including endometriosis and fibromyalgia. The main symptom of this condition is recurring pain or discomfort in the bladder and pelvic region. Urinary frequency and urgency are also common.

In order to diagnose IC in a patient, the physician must first rule out a number of other conditions, such as endometriosis, kidney stones, urinary tract infection, sexually transmitted diseases and bladder cancer. Diagnostic tests for IC include urine tests and cystoscopy (procedure that examines the inside of the bladder and urethra).

There is no cure for IC at this time. Treatment focuses on symptom relief. Treatment options include lifestyle modification (e.g., quitting smoking, avoiding certain foods), bladder training, oral medications and others. Surgical treatment of IC is generally a last resort because the outcome of the surgery cannot be predicted and symptoms sometimes persist after surgery.

Interstitial cystitis (IC) is a chronic pelvic pain disorder. It is characterized by irritation or inflammation of the bladder wall. The main symptom of this condition is recurring pain or discomfort in the bladder and pelvic region.

The symptoms and severity of IC vary greatly among individuals. Most researchers believe that IC is caused by several diseases rather than a single disease. The condition is typically chronic, rather than acute or progressive, which means that symptoms do not typically become worse over time, but remain constant. In women, symptoms of IC can become more severe before or during menstruation.

Although the cause of IC remains unknown, some researchers theorize that the condition is an autoimmune response to the triggering factors of a urinary tract infection. Others speculate that IC may occur when the bladder wall becomes damaged and allows irritants in the urine to penetrate its deeper layers. Heredity may also be a factor in developing the condition.

Some symptoms of IC resemble the symptoms typically caused by a bacterial infection of the bladder. However, medical tests have found no bacteria present in the urine of IC patients. In addition, IC patients are unresponsive to antibiotics, which are usually effective in treating bacterial infections.

Previously, IC cases were mainly classified as either ulcerative or nonulcerative, depending on whether ulcers had formed on the patient’s bladder wall. However, there is much debate over whether this classification is useful. 

Most IC cases are nonulcerative and factors, such as the capacity of the bladder or the presence of mast cells have greater influence on treatment decisions. These elements can be obtained when the bladder is measured and examined while under anesthesia. Mast cells in the tissues of the bladder may indicate an allergic or autoimmune reaction. In some cases, the success or failure of treatments (e.g., whether IC responds to dietary changes) may help characterize the type of interstitial cystitis.

There is no diagnostic test that exclusively identifies IC at this time. Tests that may be performed include a variety of diagnostic tests, including urine tests and cystoscopy, a procedure that uses a lighted scope to view the inside of the urethra and bladder.

According to the National Institute of Diabetes and Digestive and Kidney Diseases, around 1.3 million Americans are estimated to have this condition. Women account for 90 percent of cases. Researchers are working to identify the cause of this condition and develop less-invasive diagnostic techniques.

Although the cause of interstitial cystitis (IC) remains unknown, certain factors may predispose individuals and increase their risk of developing the condition. These include:

• Gender. Women are far more likely to develop IC than men. In fact, 90 percent of IC cases in the United States affect women, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
  
  
• Age. The majority of IC patients are diagnosed in their 30s or 40s, but the condition can occur in children.
  
  
• History of urinary tract infection (UTI). Patients with IC often have a history of recurrent UTIs in childhood.
  
  
• Heredity. Although IC does not commonly run in families, there have been some cases in which immediate family members also had the condition.
  
  
• Other chronic disorders. Recent research indicates that IC may be associated with the following conditions in some individuals, although the connection between these disorders is unknown:
  
  
• • Endometriosis. A condition in which the cells that line the uterus (endometrium) are found outside the uterus. It can cause chronic pain and fertility  problems in women.
    
    
  • Fibromyalgia. A condition characterized by fatigue, tenderness in specific body sites and chronic pain in the soft tissues that surround the joints.
    
    
  • Irritable bowel syndrome (IBS). An intestinal disorder associated with abdominal pain, cramping, gas, bloating and changes in bowel habits, such as constipation or diarrhea.
    
    
  • Vulvodynia. A condition characterized by pain in the area of and surrounding the vulva, and at times the vaginal area.

Interstitial cystitis (IC) is characterized by irritation or inflammation of the bladder wall. The signs and symptoms of IC can range from mild tenderness, pressure or discomfort to intense pain in the bladder and pelvic region. The intensity of the bladder pain may change as the organ fills urine or empties its contents.  

Another common symptom of IC is urinary frequency. Although IC can cause diminished bladder size, this symptom is not always associated with the size of a person’s bladder. For instance, it is not uncommon for women with severe cases of IC to urinate as frequently as 60 times per day, despite having a normal bladder capacity.

Other signs and symptoms of this chronic pelvic pain disorder may include:

• Urinary urgency
• Scarring or stiffness of the bladder wall
• Glomerulations on the bladder wall (pinpoint bleeding that results from recurrent irritation)
• Pain during vaginal intercourse (dyspareunia)
• Pain or discomfort in the scrotum or penis (men)
• Hunner’s ulcers (large sores in the bladder wall)

Symptoms of IC may become worse in women after sexual intercourse or during menstruation. Left untreated, this condition can result in long-term complications, such as diminished bladder capacity due to stiffening of the bladder wall. IC also can result in:

• Impaired quality of life. Urinary pain and frequency may cause IC patients to refrain from engaging in many social activities.
  
  
• Relationship difficulties. IC pain that accompanies sexual intercourse may affect personal and sexual relationships.
  
  
• Emotional difficulties. Chronic pain and loss of sleep associated with IC can cause stress and depression in some patients.

It is recommended that patients experiencing symptoms of interstitial cystitis (IC) notify their physician. Diagnosis of the condition typically begins with a complete medical history. Patients will be asked to describe their symptoms including how long they have experienced them and their severity. Patients also may be asked to answer a short questionnaire called the Pelvic Pain Urgency/Frequency (PUF) survey to help the physician identify if the pelvic pain is coming from the bladder. In some cases, the patient will be instructed to maintain a written record detailing the frequency of fluid intake and urination (bladder diary), also known as an intake and output log. A pelvic examination will be part of the evaluation for female patients.

The symptoms of IC closely resemble those of other urinary system disorders, and no diagnostic test can conclusively identify IC in patients. For these reasons, IC is considered a diagnosis of exclusion. Physicians must rule out conditions such as endometriosis, sexually transmitted diseases (e.g., herpes), urinary tract infection, kidney stones, bladder cancer, irritable bowel syndrome (IBS) and others before diagnosing interstitial cystitis. It is important to note that some conditions, such as endometriosis, can coexist with IC. Physicians will use appropriate diagnostic tests to determine which conditions may be present in addition to IC.

To exclude other conditions and diagnose IC, physicians typically use urine tests including a urine culture, a prostate secretion culture (in men) and procedures such as cystoscopy. During a cystoscopy, the patient is anesthetized while the physician uses a hollow, lighted tube with several lenses (cystoscope) to view the inside of the bladder and urethra. At this time, a liquid (generally saline) is released into the bladder to stretch (distend) the organ to its limits. Cystoscopy can detect inflammation, thickness and stiffness of the bladder wall and the presence of Hunner’s ulcers. These are large sores in the bladder wall, which occur in only 5 to 10 percent of cases.

When the bladder is completely distended, areas of pinpoint bleeding, known as glomerulations, may be identified. The physician may also choose to remove a tissue sample (biopsy) at this time to confirm if inflammation is present and rule out the possibility of bacterial infections and bladder cancer.

The KCL test is another diagnostic procedure that some physicians may use to test for IC and evaluate a patient’s potential response to treatments such as medications that work on the bladder lining. For the KCL test, a catheter is used to fill the bladder with a potassium chloride solution. The solution may reveal deficiencies in the layer of the bladder wall. However, the test is painful and may be only 60 to 75 percent accurate. The KCL test is not widely used to diagnose IC.

On average, individuals with IC typically experience symptoms for approximately four years before being definitively diagnosed with the condition, according to the Mayo Clinic. Patients are diagnosed with IC when:

• Urinary frequency, urgency and/or pain in the bladder, pelvic area or genitalia are present.
  
  
• Cystoscopy results confirm that the bladder wall is inflamed and Hunner’s ulcers or glomerulations are present.
  
  
• Other conditions that could cause the symptoms have been ruled out. 

There is no cure for interstitial cystitis (IC) at this time. Even when symptoms dissipate, they may still recur weeks, months or years later. The following treatment methods, however, may provide symptom relief for patients:

• Lifestyle modification. Patients can often reduce IC symptoms by making certain lifestyle modifications, such as quitting smoking, performing gentle stretching exercises and resting when pain is severe. It may also be helpful to limit consumption of the following foods and beverages, which may contribute to irritation and inflammation of the bladder:
  
  
• • Alcohol
  • Acidic foods (e.g., tomatoes, pineapple)
  • Artificial sweeteners
  • Caffeinated beverages
  • Chocolate
  • Citrus beverages
  • Spices
    
    
  In addition, many patients find relief by wearing looser belts and clothing that does not place unnecessary pressure on the abdomen.
  
  
• Bladder training. Some patients have found adequate IC pain relief by practicing bladder training techniques. Bladder training methods vary, but basically the patient decides to empty her bladder at predetermined times. Individuals also may use distractions and relaxation techniques to accommodate their bladder training. Gradually, the length between scheduled periods of urination is increased. Patients may choose to track their progress in a diary.
  
  
• Transcutaneous electrical nerve stimulation (TENS). Some IC patients obtain relief with TENS, a procedure in which mild pulses of electricity enter the patient’s body through electrodes placed on the lower back or just above the pubic region. These electrical impulses may be administered through special devices placed inside a woman’s vagina or a man’s rectum as well. Although the effect of TENS on IC is not fully understood, scientists suspect that the pulses of electricity may:
  
  
• • Increase blood flow to the patient’s bladder
  • Strengthen the patient’s pelvic muscles, which help control bladder function
  • Trigger the release of pain-blocking substances
    
    
  TENS is fairly inexpensive and permits patients to have an active role in their treatment by allowing them to decide the time, length and intensity of treatment within certain parameters. Symptom relief is generally apparent within three to four months if TENS is going to be successful. Individuals who smoke cigarettes do not respond as well to this treatment as nonsmokers.
  
  
• Oral medications. The Food and Drug Administration (FDA) approved the first oral medication for IC in 1996. The drug, pentosan polysulfate sodium (Elmiron), improved IC symptoms in 38 percent of patients who were treated in clinical trials, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Patients taking pentosan polysulfate sodium may not experience relief from IC pain for the first two to four months, and urinary frequency may not decrease for up to six months. The main side effect of this treatment is minor gastrointestinal discomfort. It works by regenerating or protecting the superficial layer that lines the bladder. It prevents the painful substances from getting to the muscle and nerve layer. 
  
  Physicians may also recommend over-the-counter medications, such as aspirin and ibuprofen, for IC-related discomfort or pain. Antidepressants and antihistamines have also helped improve urinary symptoms in some patients. Opioid analgesics (e.g. acetaminophen with codeine) or longer-acting opioids may be prescribed for patients with severe IC pain. Patients should always consult their physician before taking a new medication.
  
  
• Bladder instillation. A catheter is guided through the patient’s urethra into the bladder, where it passes a measured amount of a drug called dimethyl sulfoxide (DMSO). DMSO is held for about 10 to 15 minutes on average before being expelled from the patient’s bladder. Treatments are administered every one to two weeks for a total of six to eight weeks, and repeated as necessary. This procedure, also called a bladder bath or wash, takes place in a physician’s office.
  
  Physicians believe that DMSO works in many ways. Because the drug penetrates the bladder wall, it may be more effective in reaching the tissue to reduce swelling and block pain. DMSO may also prevent the muscles from contracting, thereby reducing urinary frequency, urgency and pain. Patients who receive bladder instillation must have certain blood tests, such as kidney and liver function tests and a complete blood count (CBC) approximately every six months. Some patients experience a garlic-like taste and odor on their breath and skin, which typically disappears 72 hours after treatment.
  
  Other treatments are being investigated for similar use. However, DSMO is the only treatment of its kind currently approved by the FDA for use in IC patients.
  
  
• Bladder hyperdistention. The physician stretches the bladder to full capacity by filling it with a gas or liquid while the patient is under anesthesia. Some patients experience marked improvement in IC symptoms after this procedure is administered during a diagnostic cystoscopy. However, this form of treatment is not ideal because it requires anesthesia and helps only a small number of patients.
  
  Although researchers are unsure why this procedure sometimes helps alleviate IC symptoms, some believe that the procedure may increase the bladder’s capacity and interrupt the pain signals transmitted by the bladder’s nerves. IC symptoms may become worse 24 to 48 hours after this procedure. However, they should return to normal or improve within two to four weeks of distention.
  
  
• Surgery. Surgery for IC should be considered only if pain is debilitating and all other treatments have failed. Most physicians are reluctant to operate on IC patients because the outcome of the surgery cannot be predicted and symptoms may persist after surgery. Patients considering surgery for IC are encouraged to speak to the physician and family members about the potential benefits, risks and side effects as well as any short- and long-term complications that may occur. Surgery for IC requires anesthesia, hospitalization and a recovery period that can last anywhere from weeks to months. Surgical procedures to reduce IC symptoms include:
  
  
• • Fulguration. A procedure in which a cystoscope (a hollow, lighted tube with several lenses) is inserted through the patient’s urethra and electricity or a laser is used to burn off Hunner’s ulcers (large sores in the bladder wall). After the area heals, the ulcers and dead tissue fall off, leaving healthy, new tissue in their place.
    
    
  • Resection. A procedure in which a cystoscope is inserted through the patient’s urethra, allowing the physician to cut around and remove any ulcers that may be present.
    
    
  • Augmentation. A procedure that enlarges the bladder by removing inflamed and damaged sections of the bladder and rebuilding the organ with tissue from the patient’s small or large intestine. After the patient’s incisions heal, urinary frequency may diminish. The effect of augmentation on IC pain varies significantly, and the condition may recur on the portion of intestine used to rebuild the bladder. 
    
    
  • Neuromodulation. This is a surgical variation of TENS, in which small electrodes are permanently implanted beneath the skin in the patient’s lower back next to the third sacral nerve root. If test stimulation is successful, a permanent battery is implanted beneath the skin for stimulations at regular intervals. Although neuromodulation has proven to be a very effective form of symptom relief for some patients, its results are not always lasting and the treatment is still in the pre-clinical trial testing phase. Therefore, neuromodulation is not available to the general public at this time.
    
    
  • Cystectomy. The surgical removal of the bladder. Following a cystectomy, the body needs another method of storing and removing urine. Therefore, a urostomy is typically performed. During this procedure, the ureters are attached to a portion of the patient’s colon, which opens onto the skin of the abdomen. Urine then empties through this opening, called a stoma, into a bag located outside of the patient’s body.
    
    Some physicians employ another technique, which also requires a stoma, but permits urine to be stored in a pouch located inside the patient’s abdomen. The patient then inserts a catheter into the stoma to empty the pouch at certain intervals each day. The stoma must be kept very clean to avoid infection. A third method, which is practiced by very few physicians, involves creating a new bladder by attaching a portion of the patient’s colon to the urethra. After the patient heals, the new bladder can be emptied by urinating at scheduled times or placing a catheter inside the urethra. Some patients continue to experience phantom IC pain after a cystectomy.

Preparing questions in advance can help patients have more meaningful discussions with their physicians regarding their conditions. Patients may wish to ask their doctor the following  questions about interstitial cystitis (IC):

1. How do I know if I have IC or a urinary tract infection?
2. Why is this condition more common in women than men?
3. What type of IC do I have?
4. What is the most likely way I contracted the condition?
5. Which tests will be used to diagnose my condition?
6. If I need a cystoscopy, where will it be performed?
7. When and from whom will I receive the results of the tests?
8. What are my treatment options for this condition?
9. How soon will I get relief from the treatments?
10. Do I have a greater risk of other conditions once I develop IC?
11. What are my risks of developing long-term complications?
12. Will I have this condition the rest of my life?
13. Can my condition affect my fertility?
14. Can it interfere with pregnancy or delivery?
15. Are my children at greater risk for this condition?