Urinary incontinence is a condition that affects the majority of women during their lifetimes. It causes anxiety and makes some avoid exercise, sex, even laughing. Doctors say it's treatable, often with affordable and nonsurgical therapies, but many don't seek treatment, believing it's a normal part of aging.
Now doctors and nurses at University Hospitals in Cleveland, Ohio are studying how to get that information to women.
"Women either don't address the problem concerned about the problem. They keep it private, they hide it, they adapt with it," said Dr. Adonis Hijaz, one of two UH doctors awarded nearly $3 million from the U.S. Department of Health and Human Services to improve care for urinary incontinence.
Urinary incontinence affects a staggering 50 to 70% of all women, according to UH. It can substantially affect women's lives, Hijaz said.
People involved in the study including doctors, nurses and a patient interviewed for this story said women are making substantial changes to adapt, including giving up exercise, carrying a change of clothes, planning trips out based on bathroom access, turning down social invitations and even giving up sex.
Sara Nelson, a mother of two girls from Westlake, Ohio, is in the study. She said she’d just like to be able to enjoy moments with her kids without worrying.
"If I'm in a conversation with my girls and something's hysterical and we're laughing about it, there have been countless times I've had to run upstairs afterwards, and that kind of adds to the humor," she said. "But it's also like, 'So that's kind of a bummer that has happened.'"
An undertreated condition
There are two main kinds of urinary incontinence: stress incontinence and urge incontinence. A woman can also have a mix of both. Urge incontinence is a strong and frequent urge to urinate. Stress incontinence is leaking a little when you sneeze or laugh or run.
Hijaz and Dr. Goutham Rao, who is also running the study, said few women seek help with the condition even if it is negatively impacting their lives.
That's because many are too embarrassed to bring it up — even with their doctors, said Nurse Navigator Melody Loechler, who is part of the UH study. When women do finally discuss their symptoms, many express relief.
"It’s really comforting for them to have someone they can safely speak to and to know that there are simple changes they can make that can really affect their quality of life is really exciting to them," Loechler said.
When women do seek help, many of them are asked to manage their problems independently, or in some cases, the patient’s complaints are not addressed due to barriers in communication between patients and physicians.
That's what the study is trying to address.
"We want to bridge this discrepancy between what we know is prevalent, but what we know is underreported and underrated," said Hijaz. "That's the big gap, and that's where the issue is."
Patients are screened at primary care visits. Then, if they opt-in, they're put in one of three groups. One group of women will get "standard of care treatment" from their primary care doctor. Another group gets the same treatment but also meets with a nurse navigator who helps patients make behavior changes, provides education, offers physical therapy options and answers questions. A third group meets with the nurse navigator and communicates with an artificial intelligence-driven ChatBot that provides additional education.
That education includes addressing the myth that urinary incontinence is just part of being a woman or what happens when you have a baby. Although this does happen to a lot of women who have babies, it can also be caused by chronic constipation, obesity and the decrease in estrogen levels after menopause, doctors say. It can also be genetic.
So far, about 58% of women screened have reported struggling with urinary incontinence, Loechler said.
Accessible solutions
Patients don't need to be part of the study to reach out for care. Many hospitals across Ohio treat female urinary incontinence, including the Wexner Medical Center at Ohio State in Columbus, Mercy Health in Cincinnati and Summa Health in Akron.
Loechler and Grace Pelfrey, another nurse navigator who works on the study, say there are many ways to treat the issue.
There are exercises, boot camp, and physical therapy with biofeedback which involves measuring muscle contractions, bladder training, lifestyle changes like skipping coffee, carbonated drinks and citrus beverages, medicine and surgery.
Nelson, the mother of two enrolled in the study, said she wants other women to know how common urinary incontinence is.
"I think it's important that we open up the discussion to remove some of the stigma and some of the natural anxiety that occurs when we do experience leakage and to just kind of started the conversation going," she said. "I think it's important women understand that it's OK, and we can get through it and we could probably fight for some change."