"People think you're crazy or hysterical, or anxious, or you just get labelled a drama queen" : exploring the stigmatisation experiences of women with endometriosis : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts (by thesis) in Psychology at Massey University, Albany, New Zealand
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Date
2022
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Massey University
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Abstract
An estimated 200 million reproductive-age women worldwide and approximately 1 in 10 New Zealand women suffer from endometriosis. Endometriosis is associated with chronic pelvic pain, heavy bleeding, infertility, exhaustion, and irregular menstruation. Endometriosis can pervade all aspects of a person’s life with negative impacts on physical health and emotional well-being. This reduced quality of life is further compounded by a significant diagnostic delay, with a reported average of 8.4 years in Aotearoa, New Zealand (Tewhaiti-Smith et al., 2022). It is well-documented across many health conditions that stigma is a barrier to health-seeking behaviour, engagement in care, and treatment adherence. No research has been conducted in Aotearoa, New Zealand to explore the role stigma plays for women with endometriosis, and very few have been conducted globally. This study aimed to address this gap and explore the experiences of women living with endometriosis focusing on the role of stigma psychosocial well-being and as well as diagnostic delay. Six women with endometriosis took part in a semi-structured interview process. Interpretative phenomenological analysis (IPA) was utilised to allow the participants to fully and deeply describe their stigmatisation experiences associated with endometriosis The analysis revealed that the women experienced significant emotional distress due to the stigmatisation at all stages of their endometriosis journey including early menstruation experiences, during their quest to get a diagnosis, and even after a diagnosis had been achieved. The findings suggested that structural stigma was the driving force behind the public stigma and self-stigma that was experienced. This was largely connected to society’s norms and stigma associated with endometriosis expectations involving menstrual etiquette and gender stereotypes, a lack of awareness and education about endometriosis, and a structural ignorance at a political level with a lack of funding for research and resources. These findings gather a glimpse into what it is like for these women to battle endometriosis and highlight the stigma that accompanies the disease. Much more research is needed into understanding the complex construct of stigma, and how this influences women who have endometriosis. It is essential that further research into this topic is conducted so that women living with endometriosis feel heard and are supported, and the mystery surrounding this enigmatic disease has one day disappeared.