“Restroom access is a critical need for many of my patients who, if forced to wait, experience severe pain. The longer the wait, the greater the pain. Anxiety and worry naturally builds when people are watching and/or making comments about the number of bathroom visits needed” offered Robert Moldwin MD (Smith Institute of Urology, NY) and co-chairman of the Multidisciplinary Approaches to Pelvic Pain Research Study. He continued “The final blow is the manager who places restrictions on bathroom visits based upon their own voiding habits (of course they usually void about four times a day) and who just can’t get the fact that someone can have a medical problem and look normal.”
This September, patients around the world unite to educate and raise awareness about interstitial cystitis / bladder pain syndrome (IC/BPS). The 2014 theme, “For Years We Suffered, Now We Stand Together” encourages compassionate restroom access, affordable therapies and improved medical care provider education.
Interstitial cystitis can be disabling. Hunner’s lesions and/or pinpoint hemorrhages are found on the bladder wall, allowing urine to penetrate deeply into the tissue. Inflammation then triggers symptoms of urinary frequency, urgency, pressure and/or pain, disrupting sleep, work and normal daily life. Simple tasks such as driving, sitting and intimacy can be painful.
“Another key goal of this campaign is to encourage patients to talk with their doctors if they cannot afford treatment” offered Jill Osborne, President of the Interstitial Cystitis Network. “The only FDA approved oral medication for IC, Elmiron® , can cost more than $600 per month for patients who lack health insurance, with no generic available.”
The IC Awareness Month campaign encourages patients to be health activists. They can distribute educational materials to physicians and clinics, design posters, start support groups, share their stories with local media outlets and donate to IC research centers.
Learn more about IC and the campaign by visiting our websites: www.icawareness.org and www.ic-network.com.