Q: Please tell me about your background and interest in Interstitial Cystitis.
A: I am very typical of IC patients. I was 32 (1992) when my symptoms started and interrupted my career at a very critical stage. I have a BA in Pharmacology and M.A. in Psychology/Organizational Development. Several times a month, I experienced intense bladder pain, discomfort and the need to urinate frequently, particularly at night. Yet, though it certainly felt like an infection, bacteria was never found in my urine
It took over a year to diagnose my IC. By summer of 1993, I was barely able to walk around the block without crying. Driving was very difficult, work was nearly impossible, and I (as some IC patients do) experienced intractable pain. Though I had an excellent urologist, I felt isolated and alone. Then, one day, I spoke with another IC patient by phone. For the first time, I felt that someone truly understood my condition. I learned several self help strategies and conventional treatments that did eventually give me substantial relief. Most of all, I was given the gift of hope.
I started my first IC support group just three months after my diagnosis and chaired my first IC medical conference one year later. In 1994, we recognized a need to bring support directly into the homes and offices of those who could not attend local meetings, hence our establishment of the first bladder disease and IC support groups on AOL. In 1995, we ventured onto the world wide web by creating the Interstitial Cystitis Network web site with the goal of offering support and information to patients, an extensive on-line research library, and clinical resources for physicians (all at no cost to our participants). In Spring 1998, the ICN was established as the first patient run publishing company dedicated to IC. We now serve nearly 10,000 patients in 16 countries.
Q: What causes IC?
A:Despite decades of documentation of a bladder syndrome (now called IC) , as well as the discovery that it effected both men and children, IC was regrettably labeled a hysterical disease of women in the 1950's when researchers suggested that a woman who had been under medical care with severe IC, may have had "repressed hostility towards parental figures handled masochistically via bladder symptoms since infancy." Awareness of the disease and proactive treatment for patients suffered a devastating set back as a generation of physicians were apparently taught that IC was no more than a hysterical disease. Even today, some patients encounter physicians who believe that there is no treatment for IC other than referral for a psychological evaluation
It was not until 1987 & 1988, that the US National Institutes of Health convened their first formal meeting on IC, establishing a definition for the disease and launching a course for future research. Researchers now believe that IC may have several origins, including possibly fastidious (able to cling to tissues and not found in normal urine) infection, a breakdown of the GAG layer in the bladder wall, possible mast cell involvement and neurogenic inflammation. There is no consensus at this time on the cause of IC and many do believe that it is a syndrome, perhaps with a variety of origins.
Q: What are the symptoms of Interstitial Cystitis?
A:IC patients can experience any combination of urinary frequency (more than 8 times a day), urinary urgency and/or bladder pain. For diagnostic purposes, a physician may also perform a hydrodistention to look for small pinpoint hemorrhages found in the bladders of IC patients, called glomerulations.
IC patients may also experience the need to urinate frequently at night (nocturia), discomfort with sex and difficulty sitting or driving a car. IC patients may also have a reduced bladder capacity and/or sensitivity to foods (such as cranberry juice, acids, alcohol, chocolate, citrus and more). You can often recognize an IC patient by their frequent need to use the restroom, particularly while driving longer distances.
