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What to consider when talking to patients

Patients want to understand their condition, and generally prefer to hear about treatment options. They want to be fully informed and educated, so it’s important they understand they might have to try a few treatments or combination of treatments before they find the ideal way to manage their symptoms. It’s also useful for them to know:1,55,57

  • How a normal bladder functions
  • What is known and not known about their condition
  • The potential causes of their condition
  • The benefits vs. risks/burdens of available treatment alternatives
  • Acceptable symptom control may require trials of multiple therapeutic options (including combination therapy) before it's achieved

Patients also need to feel they’re being listened to by their HCPs, family and friends and that their disease experiences are considered to be real.1,55,57

“We live inside these bodies, they don't… I was trying to share information with them and it was as if there was a total blank wall there.”57

Patients need to feel there’s hope for the improvement of their symptoms, and encouraged by HCPs to explore potential avenues and develop workable treatment plans to cope with their unpredictable, chronic condition.1,55,57

When patients undergo unsuccessful treatments, they want to know about any additional options. They don’t want to feel there are no further treatments or abandoned by their HCPs. Many patients will be interested in getting specialist advice or finding out about complementary and alternative treatments. Joining a support group is a good way for them to learn more about their condition, it can also help them feel less isolated as they can share experiences with their peers.1,55,57

“The emphasis on just the treatability versus the curability aspect is very important… to really sound encouraging instead of, ‘oh, we're going to try this again’… respect, creativity, hope – helps a lot.”57


  • 1.Meijlink JM. Interstitial Cystitis/Bladder Pain Syndrome. Int Painful Bl Found. 2014.
  • 55.Hanno PM, Burks DA, Clemens JQ, et al. Diagnosis and Treatment Interstitial Cystitis / Bladder Pain Syndrome.; 2014.
  • 57.Kanter G, Volpe KA, Dunivan GC, et al. Important role of physicians in addressing psychological aspects of interstitial cystitis/bladder pain syndrome (IC/BPS): a qualitative analysis. Int Urogynecol J. 2017;28(2):249-256. doi:10.1007/s00192-016-3109-2.