Mid Sweden University

Aim: To explore women’s experiences from awaiting endometriosis diagnose and treatment, its consequences and how the procedure can be improved.

Subject and methods: A qualitative study based on semi-structured interviews, consisting total eight women with a diagnosis of endometriosis and women with symptoms of endometriosis, were conducted. The material analyzed using a qualitative content analysis according to Graneheim and Lundman (2004).

Results: The overarching theme A neglected and invisible woman disease poured out from four categories; discriminative treatment, unnecessary suffering, social and physical constrains and raise awareness and adequate measures. There was a clear pattern that women with endometriosis do not receive the care and treatment they should. The consequences limit their lives that affect relationships, not least intimate relations, and well-being.

Conclusion: This study shows that it sometimes takes decades to get a diagnose and that women are dismissedas having mere menstrual pain or worse - a modern version of hysteria. The findings support such stigma myths as it shows that the women felt they were neglected, and they suffered in silence. It was also evident that increased awareness and adequate measures are needed to improve a holistic approach in the society, and among health care providers that can prevent unnecessary suffering and minimize negative daily life consequences, in women suffering from endometriosis.