Nearly 70 million adults in the US live with some form of urinary incontinence (UI), an umbrella term for a family of life-limiting conditions. These include overactive bladder, also known as urge UI, which is characterized by the frequent, urgent need to empty the bladder that is sometimes—but not always—accompanied by the loss of urine. Other common forms of UI are stress UI, which is leakage that occurs when physical stress is placed on the bladder; urinary retention, which is difficulty passing urine; and mixed incontinence, which occurs when a patient has multiple conditions simultaneously.

The National Association for Continence (NAFC) is dedicated to helping those who struggle with these conditions find the treatment they deserve and a community where they are welcomed without fear of embarrassment or judgment.

Among our key constituencies are women aged 45 to 65, and we dedicate significant resources to educate them about their conditions and encourage them to seek care from qualified medical professionals. The leading way we do that is through our website (NAFC.org), where we receive about 350,000 unique visitors per month, more than 65% of whom are female.

These women have typically been underserved—incontinence remains a difficult subject for many to discuss, even within the medical profession—and they are frequently told that UI is simply a consequence of childbirth or the inevitable result of aging. The stigma associated with UI is so high that the majority of women with symptoms are reluctant to pursue medical care or even raise the issue with their physicians.^1-3 Fewer than 1 in 3 seek medical attention,^2,4,5 and when they do finally manage to address the issue with a health care provider, they have often been living with their condition for up to 6 years.⁶

Once they gather the courage to speak up, they are most likely to discuss it with a primary care physician rather than a specialist. Historically, these physicians have little expertise with incontinence. As a result, most patients are either undiagnosed or poorly informed about the nature of their condition, and they have little to no awareness of the treatment options available to them.^1,5 This situation is even more pronounced among underserved populations like African American women,⁷ who simply do not know where to turn for information about the management solutions and a treatment path for UI.

To deepen our insights on patient perspectives regarding incontinence and hear from patients directly about their lived experiences with the condition, NAFC conducted a State of Incontinence Survey in 2019. Questions were designed to help the organization better understand patients’ current behaviors, their attitudes regarding their incontinence treatments, their efforts to find help for their conditions, and the way that their conditions impacted their lives and relationships.

The survey was administered through SurveyMonkey and was promoted to all patients visiting the website as well as those who subscribed to NAFC’s digital newsletter. Nearly 1200 patients took part. The demographic breakdown was 54% female/46% male with an age distribution of 45+ and a majority responding to 65+.

The results were revealing. Eighty percent reported that UI was a constant and frustrating battle that they fought every day. More than 1 in 3 either didn’t know about treatment options or hadn’t spoken with their doctors about treatment options. Of those who had sought medical support, only 17% said that they were satisfied with their current treatment plan. The majority said that they wished their doctors had told them more about additional treatments, and more than 3 in 4 expressed that they were actively interested in learning more about alternative management methods.

The consequence of living with a disorder that couples significant stigma with less-than-optimal doctor-patient interactions is disheartening: 90% of patients reported that their incontinence made them feel isolated, depressed, or hopeless. Patients told story after story about how their UI symptoms are an ongoing struggle every day and every week. They revealed that embarrassment, stigma, and misperceptions are all barriers to finding solutions, and no matter how many clinical therapies there might be for UI, patients have a general lack of knowledge of the current state of incontinence care or recent advances.

To convey this patient perspective to the broader community—both laypeople and medical professionals—we created a program titled “Voices of Incontinence” built around the input the survey respondents had provided. These stories were anonymized to ensure that no individual participant could be recognized (in keeping with HIPAA [Health Insurance Portability and Accountability Act] requirements), but they all represent the responses received.

These stories include Sally K, a 45-year-old female with UI trying to seek care from her primary condition physician. Bob J, a 55-year-old male with overactive bladder, addresses his interaction with his primary condition physician and eventually his urologist following prostate surgery.

We intend to bring these patient stories to life. In this way, we may be able to help the wider health care community understand the challenges that patients face seeking quality care, and potentially spark new and innovative ways to enhance patient care and improve staff training.