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Diseases and Conditions
Interstitial cystitis
From MayoClinic.com
Special to CNN.com

Introduction

Wherever you go, you first 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 wakes you up. And you may also have pain in your pelvis, which can range from mild burning or discomfort to severe pain.

You may think you have a bacterial urinary tract infection (UTI), known as cystitis, but antibiotics haven't helped. Instead you may have interstitial cystitis, or painful bladder syndrome. Interstitial cystitis affects between 700,000 and 1 million Americans. While it can affect children and men, most of those affected are women. The disorder can have a long-lasting adverse impact on your quality of life.

Although interstitial cystitis is chronic, for most people it isn't progressive, which means that however mild or severe your symptoms, they won't usually get worse over time. For many, the severity of symptoms fluctuates, and for some, the condition goes into periods of remission. Rarely, some people may experience rapidly worsening symptoms associated with a smaller bladder that's unable to hold a normal amount of urine.

Although there's no treatment that reliably eliminates the signs and symptoms of interstitial cystitis, a number of medications and therapies offer relief. Work with your doctor to find what works best for you.

Signs and symptoms

The signs and symptoms vary from person to person. They can also vary over time in one person. For instance, they can worsen during menstruation in premenopausal women. Signs and symptoms include:

  • A persistent, urgent need to urinate.
  • Frequent urination that occurs during the day and night, yet you may only pass small volumes of urine each time. People with interstitial cystitis urinate about 16 times a day on average, but this number can vary and may go as high as 60 times a day.
  • Pain in your lower abdomen (suprapubic) or between the vagina and anus in women or the scrotum and anus in men (perineal).
  • Pain during sexual intercourse. Men may also experience painful ejaculation.
  • Chronic pelvic pain.

Although signs and symptoms of interstitial cystitis 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 common bacterial 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 a healthy urinary system, the bladder expands until it's full. In an adult, that's about 8 to 12 ounces of fluid. Once the bladder is full, it 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 get mixed up somehow, and you feel the need to urinate more often and with smaller volumes of fluid than most people.

No one really knows what causes this condition, although there are many theories. Experts have put forward a number of causal theories, including that interstitial cystitis is an autoimmune, hereditary, infectious or allergic condition, but none has been proved.

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 men or children do. Men can have nearly identical symptoms to those of interstitial cystitis, but they're 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, vulvodynia, fibromyalgia and endometriosis. 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.

Screening and diagnosis

It can be difficult to detect interstitial cystitis because its signs and symptoms resemble those of many other disorders. On average, people with interstitial cystitis have experienced 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 are associated with a number of conditions, your doctor needs to perform tests to rule out other causes, including urinary tract infections, kidney stones, bladder cancer, sexually transmitted diseases, endometriosis, and vaginal infection in women or bacterial prostatitis in men.

Cystoscopy
A test sometimes used to rule out other causes of bladder pain is cystoscopy. It 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 general or regional 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 reduce bladder capacity, meaning your bladder holds less urine.
  • Reduced quality of life. Frequent urination and pain may lead to your reluctance to engage in many social activities.
  • Relationship troubles. Pain that interferes with sexual intercourse can affect your relationship with your partner.
  • Emotional troubles. The chronic pain and sleep loss associated with the condition can cause emotional stress and depression.

Treatment

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.

Medications
Your doctor 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.

Other oral medications that may improve the signs and symptoms of interstitial cystitis include ibuprofen (Advil, Motrin, others) and other nonsteroidal pain medications to relieve mild 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.

Nerve stimulation
The sacral nerves are important nerves for bladder and bowel control. These nerves run from your lower spinal cord to your bladder, pelvic floor and lower bowel. A method of nerve stimulation called sacral nerve root modulation can be very helpful for people with interstitial cystitis. First, a small wire is placed next to the sacral nerves to determine if your bladder symptoms will respond to neuromodulation. If your symptoms are reduced, a small battery-operated device, which resembles a pacemaker, is surgically implanted in your upper buttocks. This device emits electrical impulses that modulate how the nerve works, and helps to control bladder contractions.

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
An older treatment is bladder instillation, in which the prescription medication dimethyl sulfoxide, or DMSO, (Rimso-50) is placed into your bladder through a thin, flexible tube (catheter) you insert through the urethra. The solution sometimes is mixed with other medications, such as a local anesthetic or bicarbonate, to change the pH levels of the DMSO. After remaining in the bladder for 15 minutes, the solution is expelled through urination. Because DMSO is delivered directly to the bladder, it may effectively reduce inflammation and possibly prevent muscle contractions that cause frequency, urgency and pain.

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

Surgery
Doctors rarely use surgery to treat interstitial cystitis 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 your bladder and replace it with a piece of your colon, but the pain still remains and most 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. Another minimally invasive method also 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.

Self-care

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, about one in three 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. Gentle stretching of the pelvic floor can be helpful. Some people with interstitial cystitis have associated pelvic floor muscle spasms that can be treated with biofeedback.
  • If you smoke, stop. Smoking may worsen any painful conditions. Quitting may offer relief, as well as a host of other health benefits.

Coping skills

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 syndromes. 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.

January 18, 2005

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