Interstitial Cystitis/ Bladder Pain Syndrome (BPS/IC)
Interstitial cystitis- (now usually called Bladder Pain Syndrome if you don’t have any ulcers in your bladder) is a hard disease.
Hard to Explain- Symptoms in the bladder can vary and range from an ache, burning sensation, pulsing/throbbing feeling, sharp/stabbing, and this usually makes women need to pee many times a day to improve the discomfort.
Hard to Diagnose- with the average woman seeing 7 DIFFERENT doctors before receiving an accurate diagnosis. There are many other medical problems that have very similar symptoms to BPS/IC and many doctors are not trained to spot the differences. The O’Leary Sant Questionnaire can identify women with this condition. A total score >6 is suggestive and >12 strong evidence of the condition.
Hard to Treat- This condition is probably several different underlying problems that manifest the same way. Since we probably aren’t treating the same disease, standard medicines or treatments don’t work for every patient so finding the right individual plan takes time.
Hard to Manage- Since this is a fairly rare condition that is poorly understood by doctors, patients often struggle to get the social or medical support they need. On top of that BPS/IC often occurs in association with other pain conditions (fibromyalgia, IBS, etc) and causes chronic pelvic pain (myofascial pelvic pain). Coping with the physical pain is only part of managing the emotional toll and suffering this condition causes. For support, advice, and community, I recommend ICHelp.org.
The good news- treatment options are getting better and researchers are working hard at finding new therapies! For some women combining several different modes of therapy is most effective.
Talk to a urogynecologist or urologist about this condition if you think you have the symptoms.
