• From the time your symptoms of IC first began, how many doctors did you see before you were diagnosed with IC? (July 2009)
  • How long did it take you to get a diagnosis of IC? (June 2009)
  • How were you diagnosed with IC? (June 2008)
  • Who diagnosed you with IC? (April 2008)
  • Diagnosis Survey (2003 Year-long Survey)



  • Do you exercise with IC? (February 2010)
  • Do you find that exercise helps, flares, or does not affect your IC symptoms? (September 2008)

Costs of IC

Healthcare Provider Experiences

  • Do you bring IC info to your doctor to discuss? (April 2010)
  • Has your healthcare provider ever discussed “pelvic floor dysfunction” or PFD with you? (December 2008)
  • What information does your healthcare provider routinely ask you to provide . . . (December 2008)
  • Do you feel that your IC healthcare provider is . . . (September 2008)
  • Do you have difficulty communicating the severity of your symptoms to medical professionals? (August 2008)
  • If you were diagnosed with IC by a medical professional, how many did you see for your symptoms prior to obtaining a diagnosis of IC? (July 2008)
  • When seeking a diagnosis for your IC, did a medical professional ever tell you that your symptoms were all in your head (psychological)? (July 2008)

Healthcare Reform

  • The ICA is setting its advocacy agenda and would like to hear from you. Please tell us which area you believe to be most pressing for the IC patient. (November 2008)
  • What is your number one challenge with the US healthcare system? (November 2008)

Overlapping Conditions

  • Have you been diagnosed with IC & celiac disease? (September 2010)
  • If you have a related condition along with IC, such as irritable bowel syndrome (IBS), vulvodynia, or fibromyalgia, which came first? (September 2008)
  • Does your IC healthcare provider acknowledge and understand the connection between IC and related conditions such as fibromyalgia, irritable bowel syndrome, etc.? (August 2008)
  • Do you have any of the other chronic conditions that are thought to be related to IC, such as irritable bowel syndrome, fibromyalgia, vulvodynia, chronic fatigue syndrome, etc? (June 2008)
  • Overlapping Conditions Survey (May 2004)

Quality of Life

  • Swimming and IC Might Not Mix (July 2010)
  • Has living with IC caused you to feel . . . (depressed, anxious, isolated, etc)? (April 2008)
  • What is most important to you . . . (finding better treatments, cause, cure, etc)? (May 2008)

Pain Management

Self-help & Coping

  • What self-help strategy would you like more information on? (January 2009)
  • What support tool do you rely upon the most? (April 2008)



  • Does Menstruation Affect Your IC? (May 2010)
  •  If you had to select your number one trigger — excluding food and drink — that always causes an increase in your IC symptoms, what would it be? (May 2009)
  • Lots of things can trigger IC flares. If you had to select your number one trigger — the one thing that always causes an increase in your IC symptoms, what would it be? (April 2009)
  • How do you define an IC flare? (February 2009)
  • Do you consider your IC symptoms to be . . . (well managed, under control, etc) (November 2008)
  • How severe do you consider your IC symptoms to be? (July 2008)
  • How you describe your IC symptoms? (June 2008)
  • When did you develop symptoms of IC? (May 2008)


  • Have you tried pelvic floor physical therapy? (June 2010)
  • Do you do self-catherization? If so, why? (November 2008)
  • What single therapy has best helped you to control your IC symptoms? (August 2008)
  • Do you regularly use any of the following to help to control your IC symptoms (not including the IC diet) . . . (June 2008)
  • If a new treatment were to be investigated for IC, would you rather it be . . . (May 2008)


  • Have you ever participated in a clinical trial? (September 2009)
  • Do you think that it is important for people with IC to participate in IC research studies? (July 2008)

Revised Tuesday, March 10th, 2015