Women’s health has a long history of being sidelined—that’s no great secret. Women’s health issues cloaked in embarrassment are uniquely at risk of being overlooked or ignored. Urinary (UI) and fecal incontinence (FI) are among them. Shame often keeps women from speaking about bothersome symptoms, which contributes to today’s grim reality: the adult diaper market now exceeds the market for baby diapers. With 62% of adult women living with bladder leaks, I feel female incontinence has reached the level of a public health crisis.
UI is a common, progressive disorder that along with FI—also called accidental bowel leakage—is vastly undertreated. Yet they are the most prevalent pelvic floor disorders among women. UI affects 78 million women in the U.S. while FI affects 12 million. Prevalence is rising. Age and obesity are associated with increased risk of UI, and both contribute to its increased incidence. Globally, hundreds of millions of women are affected.
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The effects of vast undertreatment
The uncertainty and unpredictability of living with incontinence can affect women’s mental health, quality of life and relationships. Women may limit social engagements, experience feelings of isolation and distress and/or experience problems with intimacy. Incontinence is also associated with increased economic burden and decreased physical activity. Research shows that women with UI may reduce physical activity or stop exercising to manage symptoms, experiencing faster and greater degrees of physical decline when compared to women who are continent. They score lower on physical performance tests and show significant declines in muscle mass. Among older women, UI is a major risk factor for falls, hospitalization, nursing home admission, and caregiver dependance.
Incontinence screening: awareness needed
As the population ages, the prevalence of pelvic floor disorders continues to increase sufficient to regard it as a population-level health crisis. Despite this, few women are screened for UI. Among those receiving a diagnosis, as few as 25% seek care. Many women seeking care have had symptoms for six years or more. When queried, many women indicate they did not know treatment was available, or they prioritized other issues. Often, they reported their healthcare provider did not ask directly about these symptoms, despite that fact that screening for UI is broadly recommended by the American College of Obstetricians and Gynecologists, the Women’s Preventive Services Initiative, American Academy of Family Physicians, American College of Physicians, the Society of Urodynamics and Female Urology, the American Urological Association, and the American Urogynecologic Society.
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The promise and perils of treatment
A recent study showed that 1 in 9 older women with self-reported UI received treatment. Among those who were treated, drug therapy was the most common intervention despite clinical practice guidelines recommending against drug therapy as a first-line treatment. Recommended first-line treatment for UI and FI includes pelvic floor muscle training (PFMT). Clinicians often encourage women to access PFMT by doing “Kegels.” However, data show few women do them correctly or consistently enough to effectively reduce symptoms. This may contribute to healthcare providers’ reticence to recommend first-line therapy, leaving many women living with leaks or relegated to drug therapy, in which up to 50% are non-compliant after the first month due to side effects.
The pandemic accelerated the availability and adoption of telemedicine and digital health, which have favorably shifted how and who can access first-line treatment. Thanks to medical devices, wearables and apps, women can use new treatment modalities that support correct and consistent PFMT regardless of geography. Newer treatment modalities allow women to do PFMT at home on their schedule: a small percentage are backed by rigorous data and allow clinicians to remain engaged in treatment. This is likely in response to level-one evidence, which shows that pelvic floor muscle training is most effective when performed under the supervision of a skilled healthcare provider.
While digital health and telemedicine have made it easier to access first-line treatment, awareness remains critical. Supporting healthcare provider awareness is a published infographic titled, “Female Urinary Incontinence Evidence-Based Treatment Pathway: An Infographic for Shared Decision-Making.” This open-access reference seeks to increase access to first-line treatment by packaging evidence-based guidelines for UI screening and treatment in a graphical, easy to access format. Professional organizations and health systems may also find it valuable for clinician and member education. The infographic depicts female UI risk factors, influences on care-seeking, screening, and evaluation. It also includes a stepwise treatment approach, for which there is broad international and multidisciplinary agreement. It synthesizes current evidenced-based literature and society screening guidelines, position statements, and associated references.
Awareness among women, however, is paramount. Incontinence affects women disproportionately and has a significant negative impact on their lives. Yet, women often live in silent shame, relegated to a lifetime of adult diapers. We must remove the veil of shame that keep women from discussing their symptoms with their providers. From policy makers to families to individuals, all of us have a responsibility to prioritize women’s health and well-being. Naming incontinence what it is—a public health crisis—will support greater awareness among sufferers, better adherence to near-unanimous annual screening guidelines among clinicians and in kind, greater access to treatment.
Photo: Maria Korneeva, Getty Images
Samantha Pulliam, MD, FACOG, is Chief Medical Officer for Axena Health. She was previously the Division Director for Female Pelvic Medicine and Reconstructive Surgery (FPMRS) at UNC-Chapel Hill and Associate Director FPMRS at Massachusetts General Hospital in Boston. She was past Council Chair for the American Urogynecologic Society and remains active in its mentorship program. She received her Bachelor of Science degree in Biology from Duke University and her Medical Degree from Wake Forest University School of Medicine. She completed residency training at Brigham and Women’s Hospital, and Fellowship training at Mt Auburn Hospital in Boston. She is board-certified in Obstetrics and Gynecology and FPMRS.
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