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Keywords:

  • chronic pain;
  • diagnosis;
  • education;
  • endometriosis;
  • self-management

Aims and objectives.  The research aim was to explore women's perceptions of living with endometriosis, its effects on their lives and the strategies used to manage their disease.

Background.  Symptomatic endometriosis significantly affects women's quality of life. Characteristically the condition causes severe pain and has a negative impact on the ability to work, on family relationships and self-esteem. There has been little discussion about women's experience of endometriosis in nursing literature.

Design.  A qualitative research design informed by feminist research principles was chosen for this project.

Methods.  Eighteen women agreed to take part in the research. The individual, audio taped interviews were semi-structured and interactive. The interviews were analysed using a thematic analysis approach.

Results.  The dominant feature of data from the interviews was the experience of severe and chronic pain impacting on all aspects of life. Analysis related to pain resulted in four themes: manifestations of pain, the pain trajectory, intractable pain and controlling pain.

Conclusion.  The diagnostic process typically took 5–10 years indicating that primary health care practitioners need higher levels of ‘suspicion’ for this condition. Case studies and problem-based scenarios focusing on endometriosis in health professional education programmes would enhance diagnostic skills and knowledge development. No formal pain management follow up after diagnosis and treatment meant women actively sought information from other sources as they made major lifestyle changes in the areas of activity and nutrition. Pain management services specifically for women with endometriosis would provide much needed support with this neglected aspect of the disease.

Relevance to clinical practice.  This is a fertile area for the development of the Nurse Practitioner role which, also drawing on the considerable collective expertise of women with endometriosis, could provide significant information and support for women as they manage this highly complex condition.