Pelvic organ prolapse: a disease of silence and shame

The objectives of this study are to better understand women's experience with pelvic organ prolapse (POP) and to compare this experience between English-speaking and Spanish-speaking women.

Women with POP were recruited from female urology and urogynecology clinics. Eight focus groups of 6 to 8 women each were assembled-4 groups in English and 4 in Spanish. A trained bilingual moderator conducted the focus groups. Topics addressed patients' perceptions, their knowledge and experience with POP symptoms, diagnostic evaluation, physician interactions, and treatments.

Both English-speaking and Spanish-speaking women expressed the same preliminary themes-lack of knowledge regarding the prevalence of POP, feelings of shame regarding their condition, difficulty in talking with others, fear related to symptoms, and emotional stress from coping with POP. In addition, Spanish-speaking women included fear related to surgery and communication concerns regarding the use of interpreters. Two overarching concepts emerged-first, a lack of knowledge, which resulted in shame and fear and second, public awareness regarding POP is needed. From the Spanish speaking, an additional concept was the need to address language barriers and the use of interpreters.

Both English-speaking and Spanish-speaking women felt ashamed of their POP and were uncomfortable speaking with anyone about it, including physicians. Educating women on the meaning of POP, symptoms, and available treatments may improve patients' ability to discuss their disorder and seek medical advice; for Spanish-speaking women, access to translators for efficient communication is needed.