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PATIENT PERSPECTIVES: From Embarrassment to Empowerment: Patient Perspectives on Incontinence and Cystic Fibrosis
By: Georgia Brown, MLA (she/her/hers), Cystic Fibrosis Sexual and Reproductive Collaborative, Cincinnati, Ohio; Farah Rahman, MPH (she/her/hers), University of Miami, Florida; Raveen Syan, MD (he/him/his), University of Miami, Florida; Ranjith Ramasamy, MD (he/him/his), University of Miami, Florida | Posted on: 06 Apr 2023
Patient Story ID: 1398939
Women with cystic fibrosis (CF) are at an increased risk of developing urinary incontinence (UI) due to cyclical coughing leading to increased intra-abdominal pressure and weak pelvic floor muscles. The rate of UI in women ranges from 30% to 76%. UI in males with CF has been infrequently studied, with one study showing a prevalence of UI ranging from 5% to 15%. The pathophysiology of UI in CF is felt to be stress incontinence, and more uncommonly urge incontinence. Reasons for disparity in diagnosis of UI in women with CF include lack of knowledge, lack of screening, and lack of patient advocacy due to concurrent comorbidities.
Detection and treatment of UI is paramount as the effects of incontinence worsen the patient’s quality of life.
The Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) employs principles of patient-engaged research, raises awareness of the unique health issues for the CF community, and empowers patients to discuss these issues with their providers. Funded by the Cystic Fibrosis Foundation, the CFReSHC published a “Sexual and Reproductive Health Guide” written by patients, and it consists of 12 chapters including incontinence.
I suffered in silence with UI until I spoke with others who experienced the same issue. Through CFReSHC, I gained the knowledge and the confidence to seek treatment. My CF provider was shocked when I mentioned my UI but I am glad I self-advocated. I found a urogynecologist, underwent testing, took medication, participated in treatment trials, and now my UI is managed.
On 2 occasions, I leaked urine during my pulmonary function test. I sat in embarrassment, feeling the wetness in my pants, and worried that I smelled like urine. Now I always ask to use the restroom prior to doing the test. My quality of life improved with treatment. I no longer fear laughing at a movie, exercising, or traveling long distances. I am working on a quality improvement project with my CF care team to promote incontinence awareness so that other women do not suffer in silence.
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