Urinary incontinence (UI) means that you leak urine when you don’t mean to. When you have CF, your pelvic floor muscles (the muscles in your groin that control your bladder) may become weaker from frequent coughing. If this happens, you may not always be able to control when you urinate or pee.
Who gets urinary incontinence (UI)?
Anyone can have urinary incontinence or UI. However, it is a common issue for people with CF.
About 1 in 6 teen and young adult women with CF have experienced UI at some point in their lives. UI can happen at any age, but usually becomes more common as you get older or after you have a baby. Men with CF can also have UI, although it is not as common.
Just because you have CF does not mean you will have UI! However, it is something to be aware of in case it happens to you.
What triggers UI?
The most common things that trigger UI are coughing, laughing, exercising, sneezing, and movements such as lifting, bending, sitting down, turning, or standing up. Some women with CF say that UI also happens when they do their airway clearance or use their vest.
What are the symptoms of UI?
The symptoms of UI can range from mild to more severe. UI can happen only occasionally or can occur several times a day. Some women leak just a few drops of urine and some have larger leaks that soak through their clothes. UI may also happen during or after sexual activity. If you have a CF exacerbation and are coughing more, you may have more UI. Some women who have UI also have fecal incontinence, or leak stool when they do not mean to.
What can make UI worse in people with CF?
A few other conditions may worsen UI in people with CF. If you have UI, your CF team should check to make sure the following conditions are not causing your symptoms.
- Urinary tract infections (UTIs): UTIs happen when bacteria get inside the bladder. Common symptoms include: pain or burning when you urinate (pee), feeling the need to pass urine more frequently, and urinating very little even though you feel like your bladder is full. Sometimes you may have a UTI and not have any symptoms. UTIs are usually diagnosed by a urine test that checks for bacteria. You will be asked to pee in a cup and your urine sample will be tested for signs of an infection. The sample will then be sent for further testing. If bacteria are found, the lab will inform your provider of the name of bacteria that is causing the infection as well as what antibiotic(s) will treat the infection.
- CF-related diabetes (CFRD): Untreated or poorly controlled CFRD can sometimes make UI worse because of increased urination. Talk with your CF team if you have UI about whether you should be screened for CFRD or if your treatment regimen should be changed.
- Constipation: Constipation often makes UI worse. If you have pain when you have a bowel movement, strain, or don’t go very often, you may be constipated. Talk with your CF team about constipation. There are many medications and treatments that are available that can help with constipation and may improve symptoms of UI.
What is the treatment for UI?
There are different treatment options for UI when you have CF. Talk with your CF team to see what treatment is right for you. Even though UI is common in people with CF, it is not something that you have to live with.
- Exercises that strengthen your pelvic floor muscles
If your UI is caused by weak muscles that control your bladder, you can learn to do exercises to make these muscles stronger.
One type of exercise is called Kegels (pronounced: KEY-GULS). Kegels are easy to do and can be done anywhere at any time without anyone even knowing! Here are a few easy steps to learn how to do them:
- First, while you are passing urine (peeing), find the muscles that start and stop the flow of urine.
- Next, squeeze these muscles for 3 seconds and then relax for 3 seconds. Try not to tighten your stomach or thighs when you do this.
- Repeat 10 to 15 times and try to do this 3 times a day.
IMPORTANT: You should only do Kegels (while you are peeing) the first time. DON’T make it a habit to do these exercises every time you pee as this can cause incomplete emptying of your bladder which puts you at risk for getting an infection. You can do Kegels anywhere, anytime–lying down or sitting–no one will know.
Another important type of exercise strengthens your core muscles (a group of muscles in your middle body and stomach). These muscles help with your balance and overall strength. They also work together with your pelvic floor muscles. If you strengthen these, you can help out your pelvic floor!
- Referral to a urologist or a uro-gynecologist
If you have UI and CF, your CF team may want you to see a doctor who specializes in urinary tract problems, such as a urologist or uro-gynecologist. They may do tests to find out more about your urinary issues and help guide treatment. In some cases, very severe UI can be treated with special medications or with an operation.
- Work with a physical therapist who has special training in treating UI. Some CF clinics have physical therapists on the team who are specialists in CF and physical therapy.
Some women who have UI wear panty-shields, light pads, or special underwear to protect their clothes from urine leaks. You can buy them in a store or order them online. It may also be helpful to be prepared if you have a large leak with an extra change of clothes or underwear.
Talk with your CF team if you are experiencing urinary incontinence. They can help you manage your symptoms and explain treatment options.
- If your UI is bothering you, tell your team what your symptoms are and what seems to trigger your UI. CF providers are familiar with UI because it happens so often in people with CF. It’s okay to feel embarrassed, but that shouldn’t stop you from talking to your providers.
- Example: “Sometimes I leak urine when I don’t mean to. This happens rarely/once a week/every day/several times a day. I usually leak a few drops of urine/I have to change my underwear/clothes when this happens. The main things that trigger my leaks are coughing/sneezing/laughing/doing my airway clearance/exercise/having sex.”
- Talk with your CF team about other things that may make UI worse.
- Example: “Should I be screened for a urinary tract infection? Do I need to be screened for CF-related diabetes? I read that these things may make UI worse if not treated.”
- Ask what your treatment options are and if your team should refer you to a specialist.
- Example: “What are the treatment options for my UI? Should I see a physical therapist to learn about certain exercises like Kegels? Do I need a referral?
There is a lot of information to consider when you have CF and urinary incontinence. You can print this guide and review the recommendations with your provider(s) or you can ask if they can access the webpage during your visit.
More information can be found on the Cystic Fibrosis Foundation (CFF) website: www.cff.org