(Poster 26) “What the Heck Is That?” a Qualitative Study on Seeking Care for Prolapse

Objectives: To explore women’s experiences with new pelvic organ prolapse symptoms (POP) and seeking medical care.

Methods: Women with symptomatic POP were recruited from clinical practices and community populations across 2 states to participate in focus groups and semi-structured interviews until thematic saturation. Two focus groups and 14 interviews were conducted with 19 total participants to explore experiences surrounding diagnosis, evaluation, and management of their POP symptoms. Focus group and interview questions focused on experience with first symptoms, learning about symptoms and treatments, seeking medical care, and non-clinical factors influencing management choice. Focus groups and interviews were transcribed and transcripts analyzed using directed content analysis. New and emerging themes were identified.

Results: Participants reported the personal experience of a vaginal bulge as their first introduction to POP. Surprise, embarrassment, and disgust were commonly reported. Participants perceived their friends and family to have little or no experience with POP and many first turned to the internet – Google or social media – for additional information. Those that sought medical care, started with their primary care provider or general gynecologist, although experiences of symptoms being dismissed as a normal part of aging were common. A delay of several months was typical for participants seeking care from a subspecialist.

A desire for anticipatory guidance about POP and its risk factors emerged as a common theme among participants. Most thought the postpartum period was the ideal time for this counseling to occur.

While body image was impacted by POP symptoms, some participants reported less of an impact on body image because POP is not a “visible” problem. Many avoided intimacy due to uncertainty related to their POP and how their partners would react.

Participants varied in whether they discussed their symptoms with friends or family but many who did discussed their POP only with female family members or those who work in medicine. Those who did not discuss their symptoms cited feeling like a burden or like their friends or family would not understand their symptoms.

Conclusions: Many women learn about POP only after experiencing symptoms themselves, which often come as a surprise and are met with negative emotions. Anticipatory guidance and educational efforts on risk of POP and other pelvic floor symptoms are desired by women before the onset of symptoms and may be best performed by Obstetrician/Gynecologists in the postpartum period. Primary care providers may benefit from educational efforts on the risks and treatment options for POP to improve referral to subspecialists, as timely access to Urogynecology subspecialists remains a significant barrier to care for women with POP. An improved understanding of women’s knowledge, attitudes and experiences with POP will improve our ability to provide personalized medicine for this common and distressing condition.