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About Interstitial Cystitis

"I first had bladder symptoms when I was 13 years old and was very quickly diagnosed with urethral syndrome. After three years, the symptoms gradually went away and I lived a normal life as an athlete, student and young professional. My journey into the world of IC began at the age of 32. One late winter night, I woke up with intense frequency, urgency and, for the first time, pain. It took another year before I received my first diagnosis of IC." - J. Osborne


New urology patients are often confused by the various terms used to describe bladder conditions and symptoms, such as urinary tract infection (UTI), bacterial cystitis, urethritis, urethral syndrome, trigonitis, prostatitis, dysuria, nocturia, overactive bladder, interstitial cystitis, painful bladder syndrome and frequency-urgency-dysuria syndrome. This chapter discusses IC, some of the common bladder diseases often confused with IC, its early history, diagnostic criteria and possible causes.

Interstitial Cystitis

Interstitial cystitis is a chronic, and often severe, inflammation and/or injury to the bladder wall. Primary symptoms are urinary frequency, urgency, and, for some, severe lower abdominal or perineal pain. However, IC patients rarely test positive for infection in standard urinalysis and urine cultures (1).

Unfortunately, there is no definitive diagnostic test for IC. A diagnosis is usually based upon a patient's symptoms, a cystoscopic examination of the bladder under anesthesia and exclusion of other bladder diseases. During the cystoscopy urologists carefully examine the bladder wall for signs of IC, including small petechial hemorrhages (aka glomerulations or small wounds) and/or larger Hunner's Ulcers.

Ho, Koziol and Parsons (2) classify IC patients into two distinct categories. The great majority of patients are diagnosed with "early non-ulcerative" IC, as identified by the presence of glomerulations during cystoscopy. An estimated 5% to 10% of IC patients are believed to have the second, more severe, "classic ulcerative" IC, as demonstrated by the presence of Hunner's Ulcers and glomerulations during cystoscopy. These patients may also have reduced bladder capacities and stiffened bladder walls.

Other Diseases of the Bladder

IC can be easily confused with many different bladder diseases, such as a UTI, because the symptoms of frequency, urgency and/or pain are common to most bladder conditions. In fact, many IC patients and/or their physicians may mistakenly assume that they have recurring bladder infections despite the fact that their urine cultures are usually negative. Men with IC symptoms are often misdiagnosed as prostatitis or bladder outlet obstruction (1) patients.

The nebulous terms of urethritis, urethral syndrome, trigonitis, overactive bladder, lower urinary tract syndrome and painful bladder often add more confusion for patients, because the medical community itself continues to debate the precise definitions of each disease. Hanno (3), for example, refers to urethral syndrome as short-term lower urinary tract symptoms that resolve before a physician can perform formal diagnostic tests. Childs and Egan (4) refer to urethral syndrome patients as those who experience UTI symptoms but with no apparent infection.

As IC patients endure the diagnostic process and seek "a name" for their condition, it is often helpful to understand the other bladder conditions that IC can be mistaken for, such as:

Urinary Tract Infections
The terms urinary tract infection (UTI), bacterial cystitis and cystitis are used interchangeably to describe bladder infections, if verified by urinalysis and/or urine cultures. Bladder infections can cause frequency, urgency, painful urination, abdominal pain, fever and other symptoms.

Urethritis is used to describe an inflammation or infection of the urethra in men and women. Inflammation can be caused by direct trauma to the urethra or can be an irritation from spermicides, soaps, douches or bath oils. Some sexually transmitted diseases, such as chlamydia, can also cause a urethral infection and urethral discharge that may also be labeled as urethritis (5).

Urethral Syndrome
As mentioned earlier, urethral syndrome can be used to describe the symptoms of a UTI when urinalysis fails to reveal infection. Some physicians, such as Hanno, believe that urethral syndrome is short, rather than long, term. Many IC patients, including the authors of this book, have received urethral syndrome diagnoses before the IC was actually discovered.

Trigonitis patients may experience similar symptoms of frequency, urgency and/or pain. Trigonitis is diagnosed when physicians discover that the trigone (a triangular portion of the bladder that contains the openings for both the ureters and the urethra) appears inflamed and/or has a "cobblestone like" appearance. Some urologists don't believe in trigonitis because they believe that the cobblestone appearance is normal to the trigone. Others believe that an inflammation of the trigone may have a direct role in urethral syndrome (4).

There are several types of prostatitis diagnosed in men, including bacterial prostatitis (acute and chronic), non-bacterial prostatitis, and prostatodynia. The latter two account for 95% of all prostatitis diagnoses and usually have symptoms of perineal (or nearby) pain, reduced urine flow (and related symptoms), and possibly impotence and pain before, during or after ejaculation (6).

Dysuria & Nocturia
Dysuria describes pain with urination. Nocturia describes frequent urination during sleep or nighttime hours (7).

Overactive Bladder Syndrome & Urge Incontinence
Overactive bladder syndrome and urge incontinence patients may have frequency, urgency and episodes of incontinence. It is theorized that overactive bladder is the result of a neurological dysfunction, or smooth muscle disease, of the bladder. It is called detrusor hyperreflexia when a neurological cause is known and detrusor instability when there is no neurologic abnormality (8).

Interstitial Cystitis, Painful Bladder Syndrome, Freqency-Urgency-Dysuria Syndrome
Interstitial cystitis, painful bladder syndrome and frequency-urgency-dysuria syndrome, are used interchangeably to describe urinary frequency, urgency and/or feelings of pain or pressure around the bladder, pelvis and perineum. IC patients usually have additional findings of small hemorrhages (called glomerulations) or ulcers within the bladder. In addition, patients may have a decreased bladder capacity and painful sexual intercourse. Women may flare during their menstrual cycle. Men may have scrotal or penis pain (9).

Is IC Progressive?

This is often the first question that an IC patient asks. However, there is no easy answer. Hanno (3) states that IC does not progress continuously but reaches its final stage rapidly and then continues without significant change in symptomology. Parsons (1) believes that patients diagnosed with infection, urethral syndrome and/or IC may represent the same disease process, yet are caught in the early, mid or later stages of the disease. In our experience, many patients who struggle with symptoms are those who have not modified their diets to remove those foods and/or beverages that we know can badly irritate the bladder, such as coffees, teas, green teas, sodas, etc. Diet modification is the foundation for IC therapy and recovery. Learn more about diet.

The History of IC

Once a patient has a diagnosis of interstitial cystitis, they are often frustrated by the lack of knowledge about IC in the medical community. Although the first IC case may have been recognized as early as the mid 1800's, it wasn't until 1987 that the US National Institutes of Health convened the first meeting to discuss IC. As such, patients face the unique challenge of becoming educators and advocates for the IC community as they spread the word that IC is, indeed, a disease that is worth care and treatment.

In 1997, Christmas (10) wrote a comprehensive analysis of the history of IC, which documented the first investigators of IC, the earliest discussions of the possible causes, and early treatment preferences for this disease.

The 1800's: The Early Years

It appears that the first possible case of interstitial cystitis may have been reported in 1836 by Mercier (11). The term "interstitial cystitis" was first used in 1887 by Skene in his book Diseases of the Bladder and Urethra in Women (12).

1900 - 1950: The Formative Years

In the early 1900's, investigators believed that two possible forms of bladder ulcers were present. Fenwick described bladder ulcers that appeared on the trigonal tissues (13). In 1914, Hunner documented the presence of ulcers on the bladder wall, other than the trigone. Hunner's work was pivotal in that it documented bladder epithelial damage and the related blood vessel transitions (14).

In the 1930's, Bumpus took the position that more of the bladder was involved than originally thought and that ulcer removal was not helpful. He utilized cystodistention as a treatment option, which became one of the more popular treatments during the 1940's (15). In 1937, as deep x-ray therapy (now known to contribute to various forms cancer) gained regrettable popularity, Kreutzmann explored x-rays as a means to treat IC, yet had no permanent cures in his patient study (16). In 1938, the relationship between IC and other diseases was first discussed by Fister (17), who compared IC with a connective tissue disorder, lupus erythematosus.

In the 1940's, the first "caustic" or "irritative" bladder instillations were utilized, such as anilyne dyes (18) and silver nitrate (19). In 1944, IC was first accepted as a disease that effected men (20). Hanno (3) believes that Hand's publication in 1949, the first comprehensive paper on the disease, was seminal to the study of IC. It included the first descriptions of small, discrete submucosal hemorrhages (now known as glomerulations) found during bladder distentions.

1951-1987: The Dark Years

From the 1950's to the 1980's, it appears that IC research slowed as various elements of the medical community clung to the misguided belief that IC may have psychosomatic origins. Although a research study in 1953 first documented the presence of IC in children (21), IC was unfortunately labeled a "hysterical" disease of women in an article by Bowers, Schwartz and Leon (22). They suggested that a woman who had been under medical care from childhood to 29 years of age with severe IC, may have had "repressed hostility towards parental figures handled masochistically via bladder symptoms since infancy." Sadly, this appears to have contributed to an attitude of passiveness in patient care and physician training that has lasted throughout the following decades. This attitude was aptly demonstrated by Dr. Daniel Brookoff, as he explained his own experience during his early medical training (23).

The first time I heard of IC was in medical school twenty years ago. A famous professor was lecturing. At the end of his speech he said "There's this disease called interstitial cystitis. It is little old ladies and they have to urinate a lot. They're always in pain and they will drive you nuts. It's a psychiatric disease. It's all in their heads."

Two pivotal IC studies occurred in the late 1970's. Walsh (24) was the first to use the term "glomerulations" to describe the small petechial hemorrhages on the bladder wall described by earlier researchers. Messing and Stamey (25) altered the perception of IC irrevocably by recognizing glomerulations (in addition to ulcers) as the primary indicators of the disease and that diagnosis of IC should be done by exclusion.

1987 to Present: Years of Growth, Credibility and New Breakthroughs

With encouragement from the Interstitial Cystitis Association, the US National Institutes of Health (NIH) convened workshops in 1987 and 1988 to establish the first definition and research criteria for IC as a severe and potentially debilitating disease (26). In an effort to track the long term progress of IC patients, the NIH launched the Interstitial Cystitis Database (ICDB) studies in 1991, which continue to reveal new insight into the history and characteristics of IC.

Although some sectors of the medical community still believe that IC does not exist, researchers and physicians now aggressively support the IC cause to encourage compassionate patient treatment. In 1994, Wein and Broderick spoke strongly to their peers on this matter.

In our opinion, the first "rule" in obtaining the maximum success possible in treating this difficult group of patients is that, if you as a physician do not believe that this disease exists or if you believe the symptoms are entirely psychosomatic, then you are doing neither the patients nor yourself a great service by trying or continuing to manage them.... It is necessary not only to be knowledgeable, but also to be sympathetic (and) empathetic... (27).
In 1998, IC is now accepted as one of the most challenging conditions known to the urology community. The NIH, as well as researchers around the world, are devoting tens of thousands of dollars towards research that is slowly, yet surely, revealing essential pieces to the IC puzzle. Research studies now flourish and cover topics such as epidemiology, diagnostic methods, new treatments and long term patient care. Medical journals such as Urology and the Journal of Urology are routinely publishing articles or special editions dedicated to interstitial cystitis. A search of Medline (28), the free medical research index on the web, currently reveals hundreds of studies on IC. The research is fertile, the funding is obtainable, and IC is slowly, but surely, gaining credibility.

Diagnostic Testing

A diagnosis of interstitial cystitis based primarily on a patients symptoms, as well as the exclusion of other potential conditions which can mimic IC. Diagnostic methods have changed dramatically in the past five years with the addition of several new, less invasive tools, including the PUF Questionnaire and the Potassium Sensitivity Test. A diagnosis of IC is no longer based upon the NIDDK Diagnostic Criteria of IC, which had required a hydrodistention and cystoscopy, though research studies may still require that this test be performed.

The Epidemiology of IC

New epidemiology studies conducted in 2005 by Dr. Matt Rosenberg now suggest that up to 12% of women in the US may have symptoms of interstitial cystitis. Previous studies by Oravisto (31), Held (32) and Koziol (33) have determined that:
  • The average age of onset for IC is 40 years, with 25% of patients under the age of 30.
  • A late deterioration of symptoms is unusual.
  • Up to 50% of patients experience spontaneous remissions probably unrelated to treatment, with a duration ranging from 1 to 80 months.
  • Patients with IC are 10 to 12 times more likely than controls to report childhood bladder problems.
  • Patients with IC are twice as likely as controls to report a history of urinary tract infection; however, over half of all IC patients report fewer than one such infection per year before the onset of IC.
  • 50% of IC patients have pain while riding in car.
  • 63% of IC patients are unable to work full time.
  • IC patients have suicidal thoughts 3-4 times above the national average.
  • The quality of life of IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.
  • IC related medical care cost in the US was $116.6 million in 1987 and IC related lost economic production was $311.7 million.
  • Household size, marital status, sexual partners and education did not differ from the general population.

The Origins of IC

Researchers have yet to agree on a common cause for IC, however several research studies are currently exploring potential origins, including infection, epithelial permeability, mast cells and other theories. Please note that there is no consensus on one origin for IC. As such, many believe that IC is actually a syndrome, perhaps with a variety of different origins.

1. Infection

Given the similarity in symptoms between bacterial cystitis and interstitial cystitis, it is only natural that our thoughts would turn to infection as a source for our symptoms. In 1915, Hunner was the first to theorize that a bacterial infection as a cause of IC. Yet, decades later, IC patients still routinely test negative for infection in standard urinalysis. How then could an infection be present?

It has been suggested that some patients may have infections of "fastidious" bacteria in their bladders, such that the bacteria may adhere to, or are imbedded in, the bladder wall. In these cases, urinalysis may not demonstrate the presence of these bacteria.It is worth noting that no research studies have conclusively proven that a single, or class of, bacteria is the cause of IC. Yet, studies continue to reveal that low levels of bacteria have been found in the urine of IC patients (34).

(2) Epithelial Permeability-Leaks

C. Lowell Parsons (42-43), of the University of California, San Diego, is at the forefront for research of the GAG layer and epithelial permeability. He hypothesized that IC patients may have a defect in the epithelial permeability barrier of the bladder surface GAG layer, leading to irritative components of urine penetrating into the more sensitive layers of the bladder wall. As such, a great deal of research effort has been placed into the development of protective bladder coatings, such as Elmiron® and Cystistat®, which would coat the bladder and, ideally, reduce irritation.

(3) Mast Cells

There is evidence that mast cells are involved in IC, although it may be in a secondary role rather than as a direct cause of IC. Mast cells release histamine in a process called degranulation, which can cause localized pain and irritation in tissues where the mast cells are present. Bentzen et al. (44) discovered that patients with a higher level of mast cells in their bladder tissues experienced more bleeding and a reduced bladder capacity. Johannson and Fall's (45) research demonstrated that mild IC patients did not have elevated mast cell counts and that they appear to be increased only in patients with classic IC. Using an electron microscope, Theoharides & Sant (46-47) confirmed that the mast cells in IC patients are more likely to be degranulated or activated than in other conditions, clearly demonstrating local irritation of bladder tissues. Elbadawi (48) believes that mast cells play an important role in his own proposed neuroinflammatory reactions in IC. Research continues to evaluate the role of the mast cell in IC.

(4) Other Causes

Urine abnormalities, perhaps the presence of an irritant in the urine, offer yet another possible explanation of IC. Keay et al. (49) assessed various urine growth factors and discovered that IC patients had unusual variations in contrast to the normal population. In another study, Keay et al. (50) may have identified a protein (the antiproliferative factor) found in IC patients that may inhibit growth of the bladder epithelium. Both cases, as well as additional studies, apparently add credibility and interest to this line of research.

Neurogenic inflammation appears to be gaining respect among a subgroup of IC researchers. Neurogenic inflammation implies that nerves themselves can generate some degree of inflammation. As mentioned above, Elbadawi believes that the mast cells may actually be triggered by some type of nerve dysfunction (48). Autoimmunity and the consideration of IC as an autoimmune disorder continue to be controversial and too complex to discuss in this workbook. For additional information, we suggest that you refer to Hanno (3).


Due to the length of these files, we've had to assemble all of the references on their own page. You can read them BY CLICKING HERE!

Revision: August 11, 2006 - jho
Created: 1995-99 - Jill Osborne

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