Learning to take charge: women's experiences of living with endometriosis.

This paper describes aspects of a study that was conducted to determine women's needs for information related to laparoscopy for endometriosis. Sixty-one women attended focus groups, during which they described endometriosis as a disease of multiple losses: of relationships, of career and of a sense of self-worth. The women indicated that the pathway to diagnosis and treatment had been long and unnecessarily difficult. Many women said that they had reached a point where they decided enough was enough: the medical merry-go-round had to finish. They had to become assertive, take control and decide for themselves how they were going to manage their disease and their quality of life. For all but one woman in the study, complementary therapies were vital. For some women, alternative therapies had replaced allopathic medicine completely. Complementary/alternative therapies were a mechanism for regaining control.

Focus group study of endometriosis: struggle, loss and the medical merry-go-round.

Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61 women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the worst experience that these women described was the encounter with health professionals and the ways in which their symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with endometriosis if they are to support women with this chronic illness in their search for well-being.