"On a scale of 1 to 10, the pain rates a 15. What makes it even more excruciating is that you can test and look perfectly normal. Viral and bacterial cultures and other indicators can all be negative, making it impossible for you to convince your doctor that you are in agony and in need of help." Vicki Ratner, MD, Founder and President Emeritus of the Interstitial Cystitis Association
Have you ever wondered about the first time someone saw a damaged IC bladder?
As with many diseases, some people have more severe cases than others, and therefore, not everyone experiences a pain rated "15" as stated above. The sad fact, however, is that millions of women over the years have been told that their symptoms of intractable pain and unrelenting frequency and urgency were not real. No less tragic are the unknown number of men and children who did not receive an accurate diagnosis because of the prevailing thought that IC was a post menopausal disease that only affected women.
Lest we place too much blame on doctors who at first glance appear to be arrogant and uncompassionate, remember that in the late 1800's physicians were still uncertain about common illnesses like polio, measles, and influenza. In fact, it wasn't until the mid-1800s that a young physician's assistant, Ignac Semmelweis, theorized that the simple act of hand washing could help prevent the deaths of women who died from "childbed fever" after giving birth in the hospital. No matter what disease you are talking about, the history of medicine is full of trailblazers who pushed the envelope of the known, tempered by the caution of others who approached the unveiling of the unknown in a more deliberate manner.
Timothy Christmas recounts the early history of IC in the first chapter of Grannum Sant's 1997 textbook, Interstitial Cystitis. Christmas reports that the first recorded incidence of IC was likely in the late 1800s by a French physician named Mercier who documented a case of an ulcerated bladder that ruptured. About the same time, an English physician documented the use of intravesical silver nitrate and described a surgical procedure that temporarily diverted urine from the bladder which allowed the damaged organ to heal.
It wasn't until 1887, however, that Skene used the words "interstitial cystitis" to describe the damaged mucosal layer of an inflamed bladder, differentiating this condition from one of infectious origin. Twenty years later, Guy Hunner first described the bladder ulcers that bear his name today. Other significant, early reports include the 1944 description of IC in men, the discovery of tiny hemorrhages on the surface of IC bladders in 1949, and the reporting of IC symptoms in six children in 1953.1
Despite those early observations, US physicians in the mid 1900s often treated IC as a psychosomatic disorder based on one case study that was published in 1958 which described IC as a disease of "hysterical" middle-aged women.2 It took a 1975 study of IC patients in Helsinki, Finland3, several small studies done by independent physicians in the US, and the formation of the Interstitial Cystitis Association in 1984 by Vicki Ratner, MD and a group of patients to revive interest in the research of IC once again.
In 1987, in direct response to the advocacy efforts of ICA (and a full one hundred years after Skene's work was published describing IC), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) established the first IC research criteria, revising it in 1988. Since then, the number of research studies has increased dramatically, including studies based upon the landmark, multi-center, prospective cohort study of interstitial cystitis patients, "The Interstitial Cystitis Data Base Study" (ICDB). Data from 637 IC patients were followed from 1993 to 1997 for the ICDB, allowing for broader interpretation of IC diagnostic guidelines than established originally by the NIDDK. Knowledge of IC epidemiology continues to be refined based on observations from this study.4
- Christmas, T. J. (1997). Historical aspects of interstitial cystitis. In G. R. Sant (Eds), Interstitial Cystitis
(1-8). Philadelphia: Lippincott-Raven Publishers.
- Bowers, J.E., Schwarz, B.E, Leon, M.J. (1958). Masochism and interstitial cystitis. Psychosom Med (20)296-302).
- Oravisto K.J. (1975). Epidemiology of interstitial cystitis. Ann Chir Gynaecol Fenniae. (64) 75–77).
- National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. (n.d.). Introduction. The Interstitial Cystitis Data Base (ICDB Cohort) Study. Retrieved from https://www.niddkrepository.org/niddkdocs/ICDB/ICDB_Introduction1.pdf
Author, Speaker, Patient Advocate
Helping Yourself Is the First Step to Getting Well
For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.
For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder
For health care workers: Interstitial Cystitis: A Guide for Nutrition Educators
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