Interstitial Cystitis (IC) is a chronic bladder condition and is not an infection and its symptoms can range from mild to severe. The more severe cases of IC can have a devastating effect on both suffers and their loved ones. Many cases are mild or moderate severity.
Interstitial Cystitis Signs & Symptoms
The symptoms of IC vary for different patients. If you have IC, you may have urinary frequency/urgency or pain, pressure, discomfort perceived to be from the bladder, or all of these symptoms.
Frequency is the need to urinate more often than normal. Normally, the average person urinates no more than seven times a day, and does not have to get up at night to use the bathroom. An IC patient often has to urinate frequently both day and night. As frequency becomes more severe, it leads to urgency. Urgency to urinate is a common IC symptom. Some patients feel a constant urge that never goes away, even right after urinating. While others with IC urinate often, they do not necessarily feel the urge to go all the time.
IC patients may have bladder pain that gets worse as the bladder fills and stretches. Some IC patients feel the pain in other areas in addition to the bladder. A person may also feel pain in the urethra, lower abdomen, lower back, or the pelvic or perineal area. Women may experience pain in the vulva or the vagina and men may feel the pain in the scrotum, testicle or penis. The pain may be constant or intermittent.
Many IC patients can identify certain things that make their symptoms worse. For example, some people’s symptoms are made worse by certain foods or drinks. Many patients find that symptoms are worse if they have stress (either physical or mental stress). The symptoms may vary with the menstrual cycle. Both men and women with IC can experience sexual difficulties due to this condition; women may have pain during intercourse because the bladder is right in front of the vagina, and men may have painful orgasm or pain the next day.
Interstitial Cystitis Diagnosis
At this time, doctors have different opinions about how to diagnose IC. This is because no test so far has turned out to be completely accurate. All doctors do agree that a medical history, physical exam and urine tests are needed for evaluation. These tests are important to rule out other conditions that might be causing the symptoms. Some doctors believe that IC is present if a patient has IC symptoms and no other cause for those symptoms can be found. Other doctors believe that more tests are necessary to determine whether the patient has IC.
One test that many doctors use is simple office cystoscopy, in which the doctor looks inside the bladder with a cystoscope. This test can rule out other problems such as cancer. Whereas simple cystocopy can be performed in the doctor’s office, a more invasive test can be performed in the operating room. This involves a basic cystoscopic examination followed by a stretching or distention of the bladder by instilling water under pressure. This can reveal cracks in the bladder in more severe cases.
Cystoscopy was once part of the standard IC evaluation, but it is no longer always considered a necessary test for IC because the examination is usually normal. However, during cystoscopy, some IC patients will have small areas of bleeding, or actual ulcers, which the doctor can see through the cystoscope. If a person has symptoms of IC and the cystoscopy shows bleeding or ulcers, the diagnosis is fairly certain, although most people who have IC symptoms do not have these bleeding areas. But they may really have IC after all and may respond to the same treatments. The doctor will often then perform a bladder biopsy, which helps to rule out other bladder diseases. While this procedure is primarily used for testing, some IC patients may experience relief of symptoms afterwards. Some doctors believe that if a person has the typical symptoms of IC, and no other cause for the symptoms is found, then the patient has IC. This is still an area of controversy, and future research may help to resolve it.
Urodynamics evaluation is another test that was once considered to be part of the standard IC evaluation, but is no longer believed to be necessary in all cases. This test involves filling the bladder with water through a small catheter, and measuring bladder pressures as the bladder fills and empties. The usual results with IC are that the bladder has a small capacity and perhaps pain with filling.
At this time, there is no definite answer about the best way to diagnose IC. However, if a patient has typical symptoms and a negative urine examination showing no infection or blood, then IC should be suspected.
Interstitial Cystitis Treatment
No one knows the cause of IC. Because there are probably several different causes, no single treatment works for everyone, and no treatment is “the best.” Treatment must be chosen individually for each patient, based on his or her symptoms. The usual course is to try different treatments (or combinations of treatments) until good symptom relief occurs.
A wide variety of other treatments are used for IC depending on the severity of symptoms. The most common ones are oral hydroxyzine, oral amitriptyline and instillation of heparin into the bladder through a catheter.
The FDA-approved treatment is to place dimethyl sulfoxide (DMSO) into the bladder through a catheter. This is usually done once a week for six weeks, and some people continue using it as maintenance therapy (though at longer intervals; not every week). No one knows for certain how DMSO helps IC. It has several properties including blocking inflammation, decreasing pain sensation and removing a type of toxin called “free radicals” that can damage tissue. Some doctors combine DMSO with other medications such as heparin (similar to pentosan polysulfate) or steroids (to decrease inflammation). No studies have tested whether these combinations work better than dimethyl sulfoxide alone. The main side effect is a garlic-like odor that lasts for several hours after using DMSO. For some patients, DMSO can be painful to place into the bladder. This can often be relieved by first placing a local anesthetic into the bladder through a catheter, or by mixing the local anesthetic with the DMSO.
Hydroxyzine is an antihistamine. It is thought that some IC patients have too much histamine in the bladder, and that histamine promotes pain and other symptoms. Therefore, an antihistamine can be helpful in treating IC. The usual dose is 10 to 75 mg in the evening. The main side effect is sedation, but that can actually be a benefit because it helps the patient to sleep better at night and get up to urinate less frequently. The only antihistamines that have been specifically studied for IC are hydroxyzine and (more recently) cimetidine. It is unknown whether other antihistamines will also help treat IC.
Amitriptyline is described as an antidepressant, but it actually has many effects that may improve IC symptoms. It has antihistamine effects, decreases bladder spasms, and slows the nerves that carry pain messages (for that reason, it is used for many types of pain, not just IC). Amitriptyline is widely used for other types of chronic pain such as cancer and nerve damage. The usual dose is 10 to 75 mg in the evening. The most common side effects are sedation, constipation and increased appetite.
Heparin is similar to pentosan polysulfate and probably helps the bladder by similar mechanisms. Heparin is not absorbed by the stomach and long-term injections can cause osteoporosis (bone thinning) and so it must be placed into the bladder by a catheter. The usual dose is 10,000 to 20,000 units daily or three times a week. Side effects are rare because the heparin remains only in the bladder and does not usually affect the rest of the body.
Many other IC treatments are also used, but less frequently than the ones described. Some patients do not respond to any IC therapy but can still have significant improvement in the quality of life with adequate pain management. Pain management can include non-steroidal anti-inflammatory drugs, moderate strength opiates and stronger long-acting opiates in addition to nerve blocks, acupuncture and other non-drug therapies. Professional pain management may often be helpful in more severe cases.