Abstract
BACKGROUND: There is a lack of evidence that pregnancy reduces endometriotic lesions or symptoms, however studies indicate that people with endometriosis are commonly advised to get pregnant to manage or treat endometriosis. This study sought to examine the impact of this advice on patients with endometriosis when the advice was provided by healthcare professionals. METHODS: The Endometriosis Patient Experience Survey was a self-reported, community-based, cross-sectional online survey of people who had been medically diagnosed with endometriosis. Descriptive statistics were used to analyse the quantitative survey data and thematic analysis was undertaken for the qualitative survey data. RESULTS: 1892 participants had received the advice to get pregnant or have a baby to manage or treat their endometriosis, with 89.4% of participants receiving this advice from healthcare professionals. In exploring the qualitative data, seven themes were contextualised relating to the impact of this advice in terms of health literacy, accepting the advice, rejecting the advice, major life decisions, healthcare interactions, mental health and relationships. CONCLUSIONS: This study demonstrates profound and often negative patient impacts of the advice from healthcare professionals to get pregnant to manage or treat endometriosis. Impacts ranged from planning for pregnancy, hastening the making of major life decisions, eroding trust with healthcare professionals, worsening mental health and straining relationships. Providing evidence-based information on the treatment and management of endometriosis is essential. Pregnancy or having a baby should not be suggested as a treatment for endometriosis and the provision of this advice by healthcare professionals can have negative impacts on those who receive it.