The endo gap : the current state of knowledge of menstruating people about Endometriosis in Germany - an exploratory mixed methods study

Abstract

This study examines perceived and actual knowledge of Endometriosis (E) among menstruating individuals in Germany (GER), using insights from those possibly affected and healthcare professionals using a mixed methods approach. The first phase involves a survey analysed through descriptive statistics and ordinal logistic regression. The second phase includes expert interviews, analysed using Kuckartz and Rädicker's qualitative content analysis method. Globally, E affects 1 in 10 menstruating individuals, with prevalence rates between 8 and 15%, rising to 50% among those involuntarily childless. In GER, prevalence data is imprecise (Sarria-Santamera et al., 2020); though incidence estimates reach up to 40,000 new cases annually (Moritz et al., 2020). Diagnosis in GER often lags by over 10 years, worsened by sociocultural and medical factors. Study participants show good self-awareness about E but rate their knowledge as only sufficient. However, a knowledge test shows deeper understanding, indicating the need for better education to enable critical self-assessment. Barriers such as societal taboos, insufficient information sources and a lack of empathy among healthcare providers hinder access. The research shows digital media increases awareness of menstrual health but also risks misinformation. A correlation is found between comprehensive menstrual education and increased E awareness and knowledge. Younger generations, with more online access, show fewer taboos and greater openness. The study highlights the importance of targeted menstrual and E education. This can bridge knowledge gaps, contribute to earlier diagnosis and better E management, addressing challenges in E care and awareness.