Interstitial cystitis

Definition

Wherever you go, the first thing you do is scope out the location of the nearest toilet. You can't get a good night's sleep because the pressure or pain in your bladder awakens you. And you may have pain in your pelvis, which can range from mild burning or discomfort to severe pain.

You may think you have a urinary tract infection (UTI), but antibiotics haven't helped. Instead you may have interstitial cystitis, or painful bladder syndrome. Interstitial cystitis is a chronic condition that affects an estimated 1 million Americans. While it can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse impact on your quality of life.

The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief. Work with your doctor to find what works best for you.

Symptoms

The signs and symptoms of interstitial cystitis vary from person to person. In addition, the symptoms of each affected person may vary over time, periodically flaring in response to common triggers such as menstruation, seasonal allergies, stress and sexual activity.

Interstitial cystitis symptoms include:

• A persistent, urgent need to urinate.
• Frequent urination that occurs both during the day and during the night, yet you may pass only small volumes of urine each time. People with severe interstitial cystitis may urinate as often as 60 times a day.
• Pain in your pelvis (suprapubic) or between the vagina and anus in women or the scrotum and anus in men (perineal).
• Pelvic pain during sexual intercourse. Men may also experience painful ejaculation.
• Chronic pelvic pain.

More than 15 percent of people affected by interstitial cystitis experience only symptoms of pain, and at least 30 percent experience only frequent, urgent urination. Most affected people, however, experience both pain and frequent, urgent urination.

Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, urine cultures are usually free of bacteria. A worsening of symptoms may occur if a person with interstitial cystitis gets a urinary tract infection, however.

Causes

Your bladder is a hollow, muscular, balloon-shaped organ that stores urine until you're ready to empty it. In adults the bladder expands until it's full and then signals the brain that it's time to urinate, by communicating through the pelvic nerves. This creates the urge to urinate in most people. With interstitial cystitis, these signals somehow get mixed up, and you feel the need to urinate more often and with smaller volumes of fluid than most people.

It's likely that many people with interstitial cystitis also have a defect in the protective lining (epithelium) of their bladder. A leak in the epithelium, for example, may allow toxic substances in urine to irritate your bladder wall.

Additional theories about what causes this condition include that interstitial cystitis is an autoimmune, hereditary, infectious or allergic condition, but none has been proved.

The kidneys, ureters, bladder and urethra are the tubes and organs that form the urinary system.

Risk factors

These factors are associated with a higher risk of interstitial cystitis:

• Sex. Women receive a diagnosis of interstitial cystitis far more often than do men or children. Men can have nearly identical symptoms to those of interstitial cystitis, but they're more often associated with an inflammation of the prostate gland (prostatitis).
• Age. Most people with interstitial cystitis are diagnosed in their 30s or 40s.
• Other chronic disorders. Interstitial cystitis may be associated with other chronic pain syndromes, such as irritable bowel syndrome and fibromyalgia. The connection between these syndromes is unknown.

When to seek medical advice

If you're experiencing any of the signs or symptoms of chronic bladder pain, contact your doctor.

Tests and diagnosis

It can be difficult to detect interstitial cystitis because its signs and symptoms resemble those of other disorders. On average, people with interstitial cystitis have experienced signs and symptoms for four years before getting a definitive diagnosis.

To diagnose interstitial cystitis, your doctor will take your medical history and ask you to describe your symptoms. Your doctor may also request that you keep a bladder diary, recording the volume you drink and the volume of urine you pass. This information can be very useful for diagnosing interstitial cystitis.

Because urinary frequency and lower abdominal pain may be due to many different causes, your doctor needs to perform tests to rule out conditions such as urinary tract infection, kidney stones, bladder cancer, sexually transmitted diseases, endometriosis, and vaginal infection in women or prostatitis in men.

Tests used to diagnose interstitial cystitis may include:

• Urine tests. A sample of your urine will be analyzed for evidence of a urinary tract infection.
• Potassium sensitivity test. In this test, your doctor places two solutions — water and potassium chloride — into your bladder one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with normal bladders can't tell the difference between the two solutions.
• Cystoscopy. Doctors sometimes use this test to rule out other causes of bladder pain. Cytoscopy involves an examination of your bladder through a thin tube with a tiny camera (cystoscope). Inserted through the urethra, it allows your doctor to see inside your bladder. To help determine how much your bladder will hold, your doctor may use a liquid to determine your bladder's capacity (cystodistension). This procedure is generally performed with anesthetics to reduce discomfort.

During cystoscopy under anesthesia, a sample of tissue may be removed from the bladder and the urethra for examination under a microscope. This is to check for bladder cancer and other rare causes of bladder pain.

Researchers are looking to develop tests that will help confirm the diagnosis of interstitial cystitis without an invasive procedure.

Complications

Interstitial cystitis can result in a number of complications, including:

• Less bladder capacity. Interstitial cystitis can lead to a stiffening of the wall of your bladder and reduced bladder capacity, meaning your bladder holds less urine.
• Reduced quality of life. Frequent urination and pain may interfere with social activities, work and other activities of daily life.
• Relationship troubles. Frequent urination and pain may strain your personal relationships, and sexual intimacy is commonly affected.
• Emotional troubles. The chronic pain and interrupted sleep associated with interstitial cystitis may cause emotional stress and can lead to depression. Likewise, having depression or anxiety can worsen symptoms of interstitial cystitis.

Treatments and drugs

No simple treatment exists to eliminate the signs and symptoms of interstitial cystitis, and no one treatment works for everyone. You may need to try various treatments or combinations of treatments before you find an approach that relieves your symptoms.

Oral medications
Oral medications that may improve the signs and symptoms of interstitial cystitis include ibuprofen (Advil, Motrin, others) and other nonsteroidal pain medications to relieve discomfort. Tricyclic antidepressants, such as amitriptyline or imipramine (Tofranil), may help relax your bladder and block pain. Antihistamines may provide symptom relief for some people.

Your doctor also may prescribe an oral medication, pentosan (Elmiron), the only oral drug approved by the Food and Drug Administration specifically for interstitial cystitis. How it works is unknown, but it may restore the inner surface of the bladder, which protects the bladder wall from substances in urine that could irritate it. It may take two to four months before you begin to feel pain relief and up to six months to experience a decrease in urinary frequency. Side effects include minor gastrointestinal disturbances and possible hair loss, which reverses when you stop taking the drug. Not for use by pregnant women, Elmiron may cause bleeding and loss of pregnancy. Make sure your doctor knows if you're pregnant or planning to become pregnant.

Nerve stimulation
Transcutaneous electrical nerve stimulation (TENS) uses mild electrical pulses to relieve pelvic pain and, in some cases, reduce urinary frequency. Electrical wires are placed on your lower back or just above your pubic area, and pulses are administered for minutes or hours, two or more times a day, depending on the length and frequency of therapy that works best for you. In some cases a special TENS device may be inserted into a woman's vagina or a man's rectum.

Scientists believe that TENS may relieve pain and urinary frequency associated with interstitial cystitis by increasing blood flow to the bladder, strengthening the muscles that help control the bladder or triggering the release of substances that block pain.

Bladder distention
Some people notice a temporary improvement in symptoms after undergoing cystoscopy with bladder distention. Bladder distention is the stretching of the bladder with water or gas. The procedure may be repeated as a treatment if the response is long lasting.

Medications instilled into the bladder
In bladder instillation, the prescription medication dimethyl sulfoxide, or DMSO, (Rimso-50) is placed into your bladder through a thin, flexible tube (catheter) inserted through the urethra. The solution sometimes is mixed with other medications, such as a local anesthetic. After remaining in your bladder for 15 minutes, the solution is expelled through urination. Delivering DMSO directly to your bladder may reduce inflammation and possibly prevent muscle contractions that cause frequency, urgency and pain.

Your doctor may initially perform DMSO treatment weekly for six to eight weeks, and then perform maintenance treatments as needed — often, every couple of weeks — for up to one year.

A garlic-like taste and odor may last up to 72 hours after treatment. DMSO can affect your liver, so your doctor may monitor your liver function with blood tests. For some people, this procedure may be painful or it may worsen symptoms. Talk with your doctor about other treatment options if this happens to you.

Surgery
Doctors rarely use surgery as interstitial cystitis treatment because removal of part or all of the bladder doesn't relieve pain and can lead to other complications. People with severe pain and people whose bladders can hold only very small volumes of urine are possible candidates for surgery, but even then surgery is usually considered only after other treatments have failed. Surgical options include:

• Bladder augmentation. In this procedure, surgeons remove the damaged portion of the bladder and replace it with a piece of the colon, but the pain still remains and some women need to empty their bladders with a catheter multiple times a day.
• Fulguration. This minimally invasive method involves insertion of instruments through the urethra to burn off ulcers that may be present with interstitial cystitis.
• Resection. This is another minimally invasive method that involves insertion of instruments through the urethra to cut around any ulcers.

Fulguration and resection are not always effective and could potentially worsen your symptoms.

Lifestyle and home remedies

Some people with interstitial cystitis find relief with self-care methods, such as:

• Dietary changes. Although no scientific evidence links the cause of interstitial cystitis to diet, many people with the condition find that eliminating or reducing their intake of potential bladder irritants may help to relieve their discomfort.

  The most irritating foods can be summarized as the "four Cs." The four Cs include carbonated beverages, caffeine in all forms (including chocolate), citrus products and food containing high concentrations of vitamin C.

  If you find that your bladder is irritated by these things, you may also wish to avoid related foods such as tomatoes, pickled foods, alcohol and spices. Artificial sweeteners may aggravate symptoms in some people, as well. If you think certain foods make you feel worse, try eliminating them from your diet. Reintroduce them one at a time to determine which, if any, affect your signs and symptoms.

• Bladder training. These techniques may help reduce urinary frequency. The training involves timed urination — going to the toilet according to the clock rather than waiting for the need to go. You start by urinating at set intervals, such as every half-hour — whether you have to go or not. Then you gradually lengthen the time between urination. In addition, bladder training may involve learning to control the urge to urinate by using relaxation techniques, such as breathing slowly and deeply, or distracting yourself with another activity.

These other self-care approaches may help you:

• Wear loose clothing. Avoid belts or clothes that put pressure on your abdomen.
• Reduce stress. Try methods such as visualization and biofeedback, and low-impact exercise.
• Pelvic floor physiotherapy. Gentle stretching and strengthening of the pelvic floor can sometimes help reduce muscle spasms. Some people with interstitial cystitis have pelvic floor dysfunction that may benefit from care by a pelvic floor physiotherapist, sometimes including biofeedback.
• If you smoke, stop. Smoking may worsen any painful condition and smoking is harmful to the bladder.

Coping and support

Interstitial cystitis can have a profound adverse effect on your quality of life. Support from family and friends is important, but because the condition is a urinary problem, you may find the topic difficult to discuss.

Try self-care strategies to determine which ones offer relief. Perhaps most important, find a compassionate physician who is concerned about your quality of life as well as your condition and will work with you to help alleviate your frequency, urgency and bladder pain.

Ask your doctor about working with a clinic that treats chronic pain as a multifaceted condition, where physical treatments take a back seat to learning and self-discovery. These clinics help you look at how pain has affected your life and find ways to regain control.

Also, you might benefit from joining a support group. Such a group can provide both sympathetic listening and useful information. For a list of interstitial cystitis support groups throughout the United States or for information on how to start a group in your area, contact the Interstitial Cystitis Association on the Web or call 800-HELP-ICA, or 800-435-7422.