The lack of standardization and agreement [about what to call interstitial cystitis] are major impediments to the progress we all hope to see.
But in 2002, stuttering efforts to view the syndrome as a pain disorder, rather than a primary bladder disorder, began to gain momentum with publication of the International Continence Society standardization of terminology:
"Painful bladder syndrome is the complaint of suprapubic pain related to bladder filling, accompanied by other symptoms, such as increased daytime and nighttime frequency, in the absence of proven urinary infection or other obvious pathology... The ICS believes this to be a preferable term to 'interstitial cystitis'. Interstitial cystitis is a specific diagnosis and requires confirmation by typical cystoscopic and histological features. In the investigation of bladder pain it may be necessary to exclude conditions such as carcinoma in situ and endometriosis."
The European Society for the Study of Interstitial Cystitis (ESSIC) has proven instrumental in advocating standardization in the nomenclature, definition, and diagnosis of PBS/IC (see, "Experts strive to comprehend IC: What's in a name?"). ESSIC suggests the term "bladder pain syndrome," which fits readily into the overall taxonomy of pain syndromes of the International Association for the Study of Pain and its special interest group, Pain of Urogenital Origin. Rather than eliminating the term "interstitial cystitis," ESSIC has appended it as "BPS/IC," which it defines as:
"pain related to the urinary bladder, accompanied by at least one other urinary symptom such as daytime and nighttime frequency, exclusion of confusable diseases as the cause of the symptoms, and cystoscopy with hydrodistention and biopsy, if indicated."
Patient advocates, including the Interstitial Cystitis Association (ICA) and the International Painful Bladder Foundation, have been unhappy at not being consulted about the proposed change and its potential implications on patient access to care and reimbursement. They see no need to change the name.
A recent conference sponsored by ICA and the Association of Reproductive Health Professionals concluded that the name should be "interstitial cystitis/painful bladder syndrome" (IC/PBS), defined as:
"pelvic pain, pressure, or discomfort related to the bladder, typically associated with persistent urge to void or urinary frequency in the absence of urinary infection or other pathology."
However we ultimately refer to this enigmatic disease, it will be in the interest of all to agree soon on the terminology, definition, and diagnostic algorithm. Nothing will be written in stone, and significant modifications likely will be made over time, but the lack of standardization and agreement are major impediments to the progress we all hope to see.