Thanks to the amazing support from the LAM community and participation in a research survey conducted by the University of Washington, results from a study about urinary incontinence in LAM have been published in the Cardiopulmonary Physical Therapy Journal under the title “Stress Urinary Incontinence Is Prevalent in Women with Lymphangioleiomyomatosis”.

The study led by Dr. Brenna Lanton in the research laboratory of Dr. Mary Beth Brown found that urine leakage is very common in women with LAM, and most are not getting help for it.

The type of leakage studied is called stress urinary incontinence (SUI) which means leaking urine when pressure is placed on the bladder, such as during coughing, sneezing, laughing, lifting, or exercise. Survey responses were compared between 167 women with LAM and 218 women without LAM who were matched for important SUI risk factors including, age, weight and number of children.

The study found that significantly more women with LAM have SUI, 72% of all LAM surveyed, compared to women without LAM where SUI was reported only by 48% of those surveyed. This means women with LAM in this study had urine leakage much more often than women without LAM. The study also found that women with LAM who had leakage were also more likely to report problems like shortness of breath, mucus/phlegm, and feeling tired.

Surprisingly, women with LAM who also have SUI did not report more cough or worse lung function than women with LAM who did not have SUI. This is an important finding because many people assume urine leakage in chronic lung disease is mainly caused by a higher frequency of coughing. While the reason for more SUI in LAM remains to be investigated, it could involve differences in ventilation mechanics and weakness of pelvic floor muscles.

Another important finding is that most women with LAM who suffer from SUI reported that they have not told a medical provider about their leakage. In fact, fewer than one-third of the women with LAM with SUI had discussed their symptoms with a clinician. Some women who did report SUI symptoms to their provider still did not receive treatment. This matters because SUI is common and often treatable. For many patients, pelvic floor physical therapy can help and is recommended as the first treatment option for urine leakage.

The big message for the LAM community is this: urine leakage is very common—for both women with and without LAM; there are evidence-based treatment options available, and you do not have to just ‘live with it’. If this is happening to you, it is worth talking to your care team.

A good way to start is to tell your doctor or nurse when it happens (for example, with coughing, sneezing, exercise, etc), how often it happens, and how much it affects your daily life. You can also say whether it keeps you from being active, traveling, sleeping well, or feeling comfortable in public. Ask whether you should be referred to pelvic floor physical therapy and ask which doctor on your team is best to help (such as your lung doctor, primary care doctor, or gynecologist).

This study did not determine why leakage happens in LAM, or compare treatment options, but it does show that it is very common in LAM and underreported. If you are experiencing bothersome urinary leakage, consider discussing this with your care provider, because treatment may improve comfort, confidence, and quality of life.

Want to learn more about LAM and the pelvic floor connection? Watch Dr. Lanton’s 2024 LAMpoisum in Your Living Room webinar.

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