Newswise — October is interstitial cystitis (IC) awareness month and this year’s campaign is dedicated to fighting discrimination. Children with bladder diseases shouldn’t be punished for asking to use the restroom at school. Women shouldn’t have to endure useless hysterectomies only to discover, after the fact, that their pain was coming from their bladder. Men with bladder pain shouldn’t be told to “be a man” and be refused therapy. And, contrary to popular opinion, cranberry juice does not help every bladder disease and, in the case of interstitial cystitis, may trigger agonizing pain and discomfort. Interstitial Cystitis is an Urgent Medical Condition
An estimated three to eight million women (and one to four million men) struggle with interstitial cystitis/bladder pain syndrome (IC/PBS). Dr. Jay Burstein, a urologist at the Dekalb Clinic (Dekalb IL) offered “It’s not unusual for patients to have experienced recurring symptoms of what they thought were bladder infections for years before being referred to a urologist. Some are sleep deprived due to extreme urinary frequency. They may need to urinate every ten minutes or as often as 60 times per day. Others report urinary urgency and pressure. The most disabling symptom is pain, particularly as their bladder fills with urine. These patients are often desperate for relief and require urgent treatment.”
Normal daily functions like sitting, working and intimacy are difficult if not impossible. Fifty percent of IC patients find driving in a car painful. The quality of life for some IC patients is worse than patients experiencing chronic renal failure and undergoing dialysis.
Jill Osborne, President & Founder of the Interstitial Cystitis Network, offered “An IC patient’s life often revolves around restroom access. When you have a wounded, ulcerated bladder even one tablespoon of urine can be agonizing. Some patients cannot ‘hold it’ without experiencing bladder spasms and severe pain.”
Discrimination & Malpractice Occurs Patients often limit their lives dramatically, avoiding long car rides, flying, concerts and/or sport events where restroom access is denied. Some are homebound. Sixty three percent of patients who have IC are unable to work but those who do often face significant obstacles.
Ms. Osborne continued “The worst case of disability discrimination I’ve seen involved Anne*, a young woman who worked for a major department store in Texas. She, like many other patients, was routinely denied access to the employee restroom. In her case, however, her supervisor demanded that she wear a diaper to work so that she could urinate while still running a cash register.”
Yet, that pales in comparison to the experience of Angela, who won a $2,000,000 medical malpractice settlement when her ob-gyn needlessly removed her healthy uterus even after the urologist reported that she had interstitial cystitis. This is not unusual. Many physicians, particularly ob-gyns, primary care or emergency room personnel, are poorly trained in the diagnosis and treatment of bladder pain patients.
Early Intervention May Prevent Progression and Improve Quality of Life
There is hope! Dr. Burstein offered “The early diagnosis and treatment of interstitial cystitis can dramatically improve symptoms and patient quality of life.” Numerous therapies are now available, including: oral medications, bladder instillations, physical therapy for pelvic floor muscle tension and neuromodulation, providing many new options for patients to explore with their medical team. He continued “Left untreated and without critical dietary modification, interstitial cystitis patients can face increasing urological symptoms that may result in a severely ulcerated bladder, reduced bladder capacity and, in worse case scenarios, bladder removal.”
Diet modification is a simple and effective way of reducing some bladder symptoms yet the role of diet continues to be ignored by some patients and providers. Research studies from Long Island University revealed that certain foods that are high in acid and/or caffeine can worsen bladder symptoms, including coffees, green teas, regular teas, sodas, chocolate, fruit juices and some vitamins. Patients who continue to drink coffee, cranberry juice or other irritating foods and beverages on a daily basis often experience a dramatic worsening of their symptoms. http://www.ic-network.com/diet/
IC Awareness Month
IC Awareness Month hopes to make a difference by raising awareness at the “grassroots” level, in towns and cities across the USA and the world. It is the first month long public relations campaign dedicated to this bladder disease, motivating patients to become advocates in their communities. One key goal is to reach other patients who are suffering in silence, at home and alone, by offering hope, information and encouragement to seek treatment. We encourage compassion from family members, friends, businesses and the community at large.
Ms. Osborne said “There’s a good chance that you know someone with IC/BPS. They may be unable to sit through a movie without getting up once or twice to visit the restroom. They may think that they are getting bladder infections every month despite the fact that their urine cultures are negative. They make frequent bathroom stops during car rides. They may find sex painful. These are the patients that we’d like to reach.”
While some IC patients are streaking their hair blue in honor of IC Awareness Month, others are making donations directly to the William Beaumont Hospital (Royal Oak, MI), one of the leading IC research institutions. In this years campaign, patients and family members have been asked to evaluate and assess their community as a whole. Are medical care providers in touch with the latest research and treatment modalities? If not, we ask them to download the latest articles and distribute them to local providers and/or to contact local teaching hospitals to set up a course on bladder and/or pelvic pain conditions. Do patients in the community receive adequate support? If not, patients will be given tools to start a new support group.
Social networking has become a powerful force for advocacy. More than forty thousand IC patients have united on the IC Network website and Facebook to share their stories. They can attend free support group meetings, utilize the 24/7 support forum provided by the IC Network (http://www.ic-network.com/forum/), watch the “Living with IC” video series on YouTube (http://www.ic-network.com/videos/) and sign up for a free e-newsletters.
Proactive patients around the country are also lobbying for advocacy and increased research funding by asking their city councils and state representatives to pass proclamations in support of IC patients and/or are writing their US representatives to support additional funding for IC research.
This year, a “Thank You” campaign has been created to give well deserved, positive strokes to those medical care providers who are treating patients compassionately and proactively.
Additional media materials, backgrounders, expert interview opportunities, and IC fact sheets can be found on the campaign website at: http://www.icawareness.org.
*Names were changed for privacy purposes.
Founded in 1995, the Interstitial Cystitis Network (http://www.ic-network.com) is a woman owned, "social advocacy" health education company dedicated to interstitial cystitis and other pelvic pain disorders. Using the internet, we create innovative solutions to the pressing problems facing patients diagnosed with urologic conditions, medical care providers who care for them and the research community seeking new treatments and cures. For the past 16 years, we have provided critical 24/7 support to patients in need, developed new educational materials, conducted vital research, provided webinars/lectures and created IC awareness campaigns, all at NO COST to the patients who visit our website.
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