People with cystic fibrosis (CF) are at an increased risk of incontinence. Incontinence is the leakage of urine or fecal matter when coughing, laughing, exercising, or engaging in other activities. Coughing associated with CF can place pressure on one’s pelvic floor muscles; this repeated pressure can cause a breach in the pelvic floor, resulting in leakage. The most common kind of incontinence faced by people with CF is urinary. The exact incidence of incontinence in men and women with CF is unknown due to a lack of research, however, it is believed that the rate for women can be as high as over 70% and up to 15% for men.  

Incontinence is an uncomfortable conversation to have with your provider. I know because I’ve had it. I leaked urine during my pulmonary function test, not once but twice! I sat through provider after provider, embarrassed, with wet pants, worried I smelled like urine. When I got to my car to drive an hour home, I had to place a towel on my seat. I have leaked urine since my 20s, but I had a provider tell me I could not be incontinent because I had not given birth. I finally went to see a gynecologist who specializes in incontinence issues. It was during this conversation that I learned that there are treatments for incontinence, such as medication and medical procedures. 

While leakage is not a serious medical concern, it is a quality-of-life issue. Lack of knowledge and screening can mean more patients suffer in silence, like I did. Yet, incontinence detection and treatment are vital as symptoms can worsen over time. Knowing that many people with CF are under-diagnosed with incontinence because of stigma or miseducation, I worked on a quality improvement project with my clinic to inform providers and patients about the incontinence risk faced by people with CF. For example, I mentioned to my care team that I now ask to use the restroom before performing my pulmonary function tests. Now, at my clinic, the respiratory therapist asks patients if they would like to use the restroom before their examination, the nurse practitioner asks patients if they experience any type of leakage, and patients who screen positive can receive a referral.  

There is a stigma and shame associated with incontinence. I hid my leakage because I was too embarrassed to discuss it. After testing, I was prescribed a daily pill that resolved my symptoms, and my quality of life improved. If you are experiencing any type of leakage, don’t let the thought of an uncomfortable conversation stop you from seeking available treatment. 

By GM Brown

This post is not intended to provide medical advice. Always consult a healthcare professional for personalized treatment before making changes to your healthcare regimen.