Written by Georgia Brown
A few years ago, there was a great CFF MiniCon on Sexual and Reproductive Health. One of the discussions focused on incontinence. I never really knew what that was (leaking urine when you cough, laugh, sneeze, etc) but when a coed group discussed experiencing both urinary and fecal incontinence, I told my CF provider that screening is important. My provider asked me: “Do you leak urine?” I said: “YES!” I told him that I always ask to use the restroom before doing my PFT’s because I am afraid to leak urine during the test (yes I have done that!). I know I do not perform as well on the test if I am worried about leaking urine. I did try the bulky pads, which were uncomfortable and I worried about wreaking of urine.
After I had that conversation with my provider, I started seeing a urogynecologist. A urogynecologist was suggested to me by a member of CFReSHC. She said that this specialty is often a better option for females with incontinence. After a horrible test where I had to cough with a full bladder to show the provider I did in fact leak urine when I coughed, I was placed on an oral medication that basically stopped my “accidents.” Before that, I would cough, laugh or sneeze, leak urine and then need to change my pants; I got tired of running out of underclothes and needing to do so much laundry. I also participated in a couple of clinical trials; which also helped and I presently do not need a pill.
It is important to note that the exact incidence of urinary incontinence in the CF community is unknown due to lack of research, BUT researchers know that there IS an incidence of it in the CF community due to excessive coughing. Check out the Incontinence chapter in the CF Sexual and Reproductive Health Guide for more information on incontinence in the CF community.
Join us on May 10 for a Pelvic Floor Workshop with Beam!