With Les Kaplan, MD

Interstitial Cystitis, a bladder condition associated with urgency, frequency and pelvic discomfort, frustrates those who suffer from it and occasionally even those who treat it. Too often doctors dismiss women afflicted with this uncomfortable disease as being malingerers in need of psychiatric, not medical, care. Too often women dismissed by these doctors don’t realize that they need to see another doctor with another set of diagnostic tools and clinical skills. As a result, they suffer needlessly. Because the symptoms of interstitial cystitis, often referred to as IC, are often confusing and inconsistent, there may be a bit of trial and error before an appropriate treatment begins. If you have been diagnosed with IC, or suspect you might have it, we hope this chapter enhances your understanding of the illness and treatment available.

If you have a problem with urinary frequency, urgency, and pelvic discomfort, and your doctor has not been able to figure out what it is, we hope reading this chapter will guide you through the maze of medical tests and procedures needed for a diagnosis. Perhaps it will confirm your suspicions that you need a second or third opinion, or simply a doctor with a different area of expertise. Rest assured that you’re not alone with this difficult, frustrating problem, and take heart – research on this condition is on going.

The medical profession has more to offer IC sufferers now than we have in the past, but we don’t have a complete understanding of the problem yet. You can help yourself by learning all you can to ensure you get the best possible care. As

one of our patients said to us when we told her she had IC, “This disease stinks, and life isn’t fair. Now what?” This chapter outlines the best we have to offer.

WHAT IS INTERSTITIAL CYSTITIS?

The truth is we don’t exactly know what Interstitial Cystitis (IC) is. We describe it as a bladder condition associated with bothersome urgency and frequency of urination and/or recurrent discomfort or pain, both in the bladder and the nearby pelvic area. In other words, if you frequently have pain or serious discomfort while urinating, and you need to urinate much more often than you used to, you may have IC. For reasons that we don’t yet understand, the vast majority of sufferers of IC, upwards of 90%, are women.

Interstitial cystitis has been known by many other names over the years, including chronic cystitis, painful bladder syndrome or urgency-frequency syndrome. A condition often referred to as urethral syndrome, originally thought to be a non-infectious irritation of just the urethra, is probably a mild form of IC. Some women who assume they are having recurrent urinary tract infections, or think they are getting bladder infections after intercourse, may, in fact, have early symptoms of IC. While their urine cultures usually do not grow bacteria, which would indicate infection, these women are often treated with antibiotics all the same. Some women have had persistent symptoms of bladder pain or urinary frequency for months after proper treatment for a true bladder infection. These women may also have IC. The onset of IC is usually gradual, but the symptoms often worsen over time.

So far, despite active research, the exact cause of this condition is not clear. Although this condition was first described in the late 1880’s, it was not until the 1970’s that the first studies were done to clearly define IC as a condition apart

from other bladder problems. And, not until 1987 were precise criteria suggested to help doctors reliably establish a diagnosis. It may turn out that IC is an assortment of conditions that all exhibit the same symptoms and, therefore, seem like the same disease. Or it may turn out to be something we haven’t even thought of yet.

WHAT CAUSES INTERSTITIAL CYSTITIS?

We really don’t know. Scientists and physicians have proposed several theories, but the truth is that we still don’t know. Because having IC often feels like an acute bacterial bladder infection, one theory suggests that IC may start with such an infection. That theory proposes that an inappropriate immune system response to the initial infection results in the patient’s own immune system attacking and injuring the lining of her bladder, which leads to the chronic symptoms associated with IC. However, other researchers think this is unlikely because bacteria are not found in the urine of women with IC, and antibiotics do not resolve the symptoms. Still other researchers feel that IC is an infection that can’t be found by common testing because the organism is of an unusual type.

Another theory links IC with the bladder lining cells which produce mucous that coats and protects the cells from the irritating effects of normally acidic urine. Researchers have identified substances that interfere with the production of this mucous and found that they can produce the symptoms of urgency and frequency just like IC. Yet another theory suggests that an abnormal bladder lining may allow irritating substances to easily pass into the cells and cause the symptoms of IC. Other doctors believe that foods containing high levels of potassium or are high in acid can cause irritation to the bladder lining in susceptible women. Still others feel that IC may be a condition of the bladder similar to food allergies. And, while IC has been seen in some mothers and

daughters and ethnic groups, a specific genetic link has not been found. Now you should have an idea why IC is confusing to both patients and doctors. However, it may be that there are many causes of what we call IC, but the bladder responds the same way, with urgency, frequency and pain, no matter what the cause.

IS INTERSTITIAL CYSTITIS ALL IN YOUR HEAD?

When faced with a confusing set of symptoms, some doctors conclude that the condition must be something psychological. However with IC, this is absolutely not the case. IC is a medical condition of the urinary system.

IC can, however, make women more vulnerable to psychological troubles. As is true with all chronic pain syndromes – low back pain, chronic pelvic pain, TMJ (jaw) pain - unrelenting pain that is not easily diagnosed and cured can lead to depression. While antidepressants can alleviate the depression and make the patient feel better, they don’t address the cause of the pain. Also, high levels of stress often decrease the brain’s tolerance for pain and may make the IC worse. Stress may not cause IC, but stress reduction can often help reduce symptoms (see page xx).

• WHAT ARE THE SYMPTOMS OF INTERSTITIAL CYSTITIS?
• HOW COMMON IS INTERSTITIAL CYSTITIS?
• HOW CAN THE DOCTOR TELL IF YOU HAVE INTERSTITIAL CYSTITIS?
• WHAT ARE THE CRITERIA FOR DIAGNOSING INTERSTITIAL CYSTITIS?
• WHAT CAN BE DONE TO TREAT INTERSTITIAL CYSTITIS?
• CAN BLADDER TRAINING HELP WOMEN WITH INTERSTITIAL CYSTITIS?
• WHAT IS HYDRODISTENTION AND CAN IT HELP INTERSTITIAL CYSTITIS?
• CAN DIETARY CHANGES HELP INTERSTITIAL CYSTITIS?
• CAN ORAL MEDICATIONS BE USED TO TREAT INTERSTITIAL CYSTITIS?
• ARE THERE OTHER MEDICATION OPTIONS?
• CAN COMBINATIONS OF MEDICATIONS BE USED?
• CAN PAIN MANAGEMENT TECHNIQUES BE USED FOR INTERSTITIAL CYSTITIS?
• ARE THERE SURGICAL TREATMENTS FOR INTERSTITIAL CYSTITIS?
• ARE THERE NEW TREATMENTS BEING DEVELOPED FOR INTERSTITIAL CYSTITIS?

Edited Excerpts from our book
The Incontinence Solution

By William H. Parker, MD, Amy E. Rosenman, MD, and Rachel Parker

Order The Incontinence Solution directly from Amazon.com.

Previous Chapter | Next Chapter | Table Of Contents