"Millions Suffer, Few Understand" encourages patients to talk openly about IC/BPS

This September, patients around the world will unite to share their personal stories and struggles with interstitial cystitis / bladder pain syndrome (IC/BPS). The 2013 theme, "Millions Suffer, Few Understand" encourages patients and providers to talk openly about this common yet often misunderstood pelvic pain condition.

"I see patients every day who have been exposed to a medical system that has often been poorly responsive to their needs. Frequently, the condition is not diagnosed or the clinician feels uncomfortable with available, effective management strategies. Furthermore, there appears to be a general lack of knowledge in the lay community that the condition even exists." offered Robert Moldwin MD (Smith Institute of Urology, NY). He continued "My greatest hope is that IC Awareness month will have a positive impact for both clinicians AND patients."

Interstitial cystitis can be disabling. Hunner's ulcers 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.

Researchers are trying to determine why IC/BPS patients often struggle with other conditions such as: pelvic floor dysfunction, irritable bowel syndrome, endometriosis, fibromyalgia, chronic headache and TMJ. An abnormal pain processing or nerve hypersensitivity disorder may be part of the problem.

Jill Osborne MA, President of the IC Network, offered "During IC Awareness Month, patients are encouraged to be health activists. They can distribute educational materials to physicians and community clinics, design posters, start local or virtual support groups, encourage their political representatives to issue proclamations, share their stories with local media outlets and donate to IC research centers."

One key goal is to encourage patients to talk with their doctors if they are continuing to struggle with symptoms. New guidelines were released by the American Urological Association (2011) which provide updated diagnostic and treatment strategies. Patients who are low income and/or lack health insurance are given a variety of behavioral and OTC strategies that may help.