Breaking the Silence: Unveiling the Cultural Barriers to Endometriosis Disclosure in Malaysia

Wai Ping Penny Lim, Jen-Sern Tham, Mohd Nizam Osman, Siti Zobidah Omar

Abstract


Endometriosis is a debilitating disease that affects many women globally during their reproductive years of life. However, cultural barriers often prevent women from disclosing their condition, leading to delayed diagnosis and treatment. This study explores how cultural barriers in Malaysia impact the avoidance goals of disclosure among women living with endometriosis. Online in-depth interviews were conducted via the Zoom platform using a semi-structured interview guide. Fifteen Malaysian women living with endometriosis were recruited from Endometriosis Malaysia online support group based on purposive sampling. Thirteen of them are married, seven of them have children, and the remaining two informants are single. Analysis was done using thematic analysis. Findings revealed five main themes on cultural barriers why Malaysian women living with endometriosis chose to stay silent over disclosures: (1) stigma and being judgemental, (2) conservative upbringing, (3) language barriers, (4) gender preferences, and (5) spoon feeding culture. In conclusion, it is imperative to comprehend the impact of cultural values on the disclosure of experiences by women living with endometriosis. Cultural barriers need to be dismantled, and women with endometriosis should be empowered to overcome them. By shedding light on this issue, we aspire to increase awareness and foster open communication about endometriosis. It is high time to break the silence and empower these women to voice their concerns and educate the general public about this debilitating condition.

 

Keywords: Cultural barriers, endometriosis, disclosures, Malaysia, women.

 

https://doi.org/10.17576/JKMJC-2026-4201-02


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