Earlier this summer, there were some patients on Facebook who suggested that IC subtypes were not real. Here is the history of the four subtyping systems proposed for IC/BPS to date. This is a REAL thing that is now helping patients find their unique presentation of IC/BPS so that they can focus on the correct [...]
Researchers around the world have pursued the holy grail of diagnostic testing for IC/BPS - a simple, non-invasive urine test. Researchers at Beaumont Hospital, the nations leading IC research center, have developed a urine test which corrects classified all Hunner's lesion patients. Simply astonishing! In the IP4IC study, researchers measured urinary cytokine levels in 146 [...]
Platelet-rich plasma (PRP) is a concentrate of platelet-rich plasma protein derived from whole blood. It is extremely rich in growth factors and cytokines, which regulate tissue reconstruction. PRP has been used to encourage healing of various soft tissues in the human body as well as to assist in surgical wound healing. Researchers in Taiwan conducted [...]
We were heartbroken to learn that Rosiptor (AQX-1125), once believed to be a promising new therapy for interstitial cystitis and bladder pain syndrome, has failed to demonstrate success in their latest clinical trial, the Phase 3 LEADERSHIP 301 study. In a press conference, David Main, CEO of Aquinox Pharmaceuticals, said “This is a disappointing result for [...]
If you struggle with Hunner's lesions (aka Hunne's ulcers), the odds are that you've tried a variety of bladder treatments with little effect. Why is Elmiron and/or DMSO ineffective for Hunner's lesions? Because they don't treat the lesion directly. The American Urology Association recommends lesion directed therapy: fulguration, laser therapy and/or triamcinolone injection into the [...]
Do you know that no new treatments can be approved unless they pass real life testing with IC patients? When studies and clinical trials seek patient participants, they are conducting critical research to determine if a new treatment can help. I, for example, participated in the first study on PTNS, now known as Urgent PC. [...]
Have you been diagnosed with IC/BPS? If you are a female between the ages of 18 and 85, with urinary frequency, urgency and pelvic discomfort or pain for at least six months, you may be eligible to participate in a clinical research study. IC/BPS affects 15 to 24 percent of adult women and has a [...]
A decade into the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network and the research is still going strong. In 2017, the MAPP Network published 12 articles of its findings in various medical journals. Researchers from throughout the United States and Canada continue to work together and join resources to make [...]
The Peer Reviewed Medical Research Program (PRMRP) research advocate Jill Heidi Osborne MA recently participated in the evaluation of research applications submitted to the PRMRP sponsored by the US Department of Defense. Ms. Osborne has served as a consumer reviewer for the past six years. As a consumer reviewer, she was a full voting member [...]
A New IC Survey From USC Seeks To Understand The Impact of Diagnostic Delays In Women With IC/BPS. Principal Investigator: Katherine Volpe, MD This survey is being conducted by Katherine Volpe, who is a fellow at the University of Southern California. We know that many women with interstitial cystitis or bladder pain syndrome (IC/BPS) experience [...]
