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.

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.

Predictors of hysterectomy as a treatment for menstrual symptoms

Background: Hysterectomy is a common procedure in Australia; approximately 1 in 5 Australian women undergoing a hysterectomy by the age of 50 for indications such as fibroids, disorders of menstruation (including excessive or irregular menstrual bleeding), and endometriosis. However, little is known about the characteristics of women who have had the procedure or the predictors of hysterectomy as a treatment for menstrual problems. This study of 687 middle-aged Australian women suffering from menstrual symptoms aimed to identify the common health and demographic characteristics that were likely to lead to hysterectomy for the treatment of these problems.

Methods: A cross-sectional and a prospective cohort study were undertaken as a substudy of the Australian Longitudinal Study on Women's Health (Women's Health Australia). Women from the mid-aged cohort of the Women's Health Australia study who identified having menstrual problems (n = 715) in the 1996 and 1998 surveys or who had undergone a hysterectomy (n = 218) during that time were recruited. A self-administered instrument was mailed to the 933 women in 2000. Data were analyzed using backward logistic regression to identify the characteristics that increased the likelihood of women undergoing hysterectomy for the treatment of menstrual problems.

Results: Factors that increased the likelihood of hysterectomy as a treatment for menstrual problems were varied. They included the number of menstrual symptoms experienced (odds ratio [OR], 1.63; p < .005) or conditions diagnosed (such as fibroids or excessive menstrual bleeding; OR, 2.5; p < .0005), a perception that information was available about menstrual problems (OR, 1.16; p < .001), being influenced in the decision making process to elect a treatment option (OR, 1.25; p < .025), and dissatisfaction with the other treatments tried before hysterectomy (OR, 0.63; p < .0005).

Conclusions: Hysterectomy seem to be the treatment of choice for women experiencing a number of menstrual problems and less than satisfactory outcomes with other treatment options. Importantly, women appear to be making decisions based on the perception of sufficient information available about their menstrual problems, regardless of whether or not this was actually the case. Women are being influenced in their decision-making process to undergo a hysterectomy by health professionals, such as general practitioners and gynecologists.