Characterization of a clinical cohort of 87 women with interstitial cystitis/painful bladder syndrome.

Objective: To provide a characterization of a cohort of women with interstitial cystitis/painful bladder syndrome (IC/PBS) by describing their historical and clinical characteristics. This was reported with the National Institutes of Health chronic prostatitis cohort, but a literature review did not reveal a similar study for women with IC/PBS.

Methods: A total of 87 women with IC/PBS were referred to the Beaumont Women's Initiative for Pelvic Pain and Sexual Health program. A certified nurse practitioner took a comprehensive history and performed a pelvic exam for each. Data were analyzed using descriptive statistics to describe this cohort.

Results: Most women experienced constant pain for 5 or more years (mean Visual Analog Scale = 5 out of 10). A total of 94.2% had levator pain. More than 50% had vulvar pain with exam. More than half reported a history of abuse, often in more than one life stage. A total of 28% had cesarean births and 76% had a history of miscarriage, stillbirth, or abortion. Women averaged 4 lifetime pelvic surgeries, and 48% had hysterectomies, two-thirds of which were done before IC/PBS diagnosis. Premenstrual women reported pain throughout the menstrual cycle. As many as 12% had chlamydia previously, which was higher than the national average. Common comorbidities were pelvic pain (93%), allergies (86%), and sexual dysfunction (72%).

Conclusions: This population of women with unrelieved chronic pain, frequency, and urgency is in desperate need of care. Researchers should continue to search for the etiology, prevention, and treatment interventions that are effective in dealing with IC/PBS. It may be most therapeutic to develop a multimodal plan of care that includes physical therapy, oral and intravesical therapies, neuromodulation, and cognitive-behavioral therapies.