Every September, IC/BPS patients and organizations around the world gather together to promote interstitial cystitis, bladder pain syndrome and chronic pelvic pain. This year, our campaign is bold and blunt, telling the story of patients who are refused pain treatment with, in some cases, tragic results. Despite decades of research showing that this medical condition is real and treatable, countless patients have been told that their pain was not real and/or “all in their heads.” Despite pain levels as severe as cancer and/or bladders so profoundly damaged that they are bleeding, they are sent home with no pain care other than an OTC product. This trend has become far more real with the passage of the CDC Guidelines for Chronic Pelvic Pain which has resulted in thousands of chronic pain patients forcibly removed from a treatment that they were not abusing, not misusing and showed no signs of addiction.
By her 24th birthday, Lisa Benshabat had been to more than ten specialists. Most doctors dismissed her reports of pain despite a diagnosis of IC that was confirmed by multiple specialists. They simply did not believe that she was suffering and, tragically, she took her life in January 2016. Her mother Gail Benshabat is a spokesperson for this years IC Awareness Month and will bring her story to the Budapest meeting of the European Society For the Study of BPS in late September. She said “What would bring a young woman or man to the bring of ending their life? It’s called the lack of hope. There was no collaboration between her medical care providers to ensure that her pain was controlled and that her emotional health was monitored.“
This year, we ask patients to talk about their pain and struggles. By working together, we can not only educate medical providers that IC pain can be severe and that patients may require more intense pain treatment. We absolutely want to reach out to patients who are struggling with pain and give them the hope that they deserve, some treatment ideas and tips that they can use with their care providers as they discuss their pain needs.
My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders.
As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life.
An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions.
With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.