Endometriosis, an unknown entity: the consumer`s perspective

This paper reports the findings of a consumer-driven investigation conducted by the Centre for Clinical Nursing Research at Epworth Hospital in conjunction with the Endometriosis Association (Victoria, Australia) aimed at identifying the information and support needs of women experiencing endometriosis. Women's experiences of endometriosis and laparoscopy were examined. A questionnaire was designed to explore women's experiences of, and informational need for, the four categories of: diagnosis of endometriosis, endometriosis, laparoscopy and managing at home. A total of 465 women who had a positive diagnosis of endometriosis, including patients at the Epworth Endometriosis Centre and members of the Endometriosis Association, were included. The data were analysed in terms of frequency of responses and themes that arose from the research. Five main themes consistently emerged from the overall analysis of the questionnaire; these included: lack of communication, no-one listens, the emotional turmoil, expressions of gratitude to the Endometriosis Association and being young and helpless. Also identified was a lack of understanding of endometriosis and laparoscopy, on behalf of both the patient and the practitioner, which has led to communication of misinformation, extended physical pain and emotional distress. Based on these findings, recommendations were made for education strategies to be focused towards increasing awareness of endometriosis and for information to be disseminated using the preferred printed format and to be made available from gynaecologists, hospitals and schools. Through consumer participation, the information obtained in this study is of benefit to all women who come in contact with endometriosis by (a) validating women's experiences of endometriosis and (b) identifying women's needs in relation to the disease.

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.

Recovery from gynaecological day surgery : are we underestimating the process

This paper reports a study investigating the post operative experiences of 80 women following gynaecological day surgery. Women kept a diary for the first 4 days following surgery. The diary included a recovery rating scale and a symptom management index focusing particularly on symptoms. A telephone interview conducted on post-operative day 10 further explored experiences. Results at day 4 indicated women experienced significant problems with pain, moving around and tiredness. By day 10, women were still experiencing tiredness, pain and other lingering problems. The study indicates that patients experience more problems than discharge education assumes.

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.