Women's experience of endometriosis

J Adv Nurs. 2004 Jun;46(6):641-8. doi: 10.1111/j.1365-2648.2004.03055.x.


Background: Endometriosis is a chronic disease affecting between 5% and 15% of women of reproductive age. Diagnosis can be delayed for many years, despite the existence of severe pain, and women often find that their experiences are not taken seriously by health professionals. Little research has been conducted into how endometriosis affects their lives.

Aim: The aim of this paper is to report a study exploring women's experience of living with endometriosis.

Method: A qualitative approach was used, in which women were asked to relate their stories starting from the first experience of symptoms that they associated with endometriosis. Key areas to be followed-up during interviews were identified by women with endometriosis who were not participants. Fifteen semi-focused interviews were conducted, and thematic and content analysis were carried out using the identified key areas, and themes elicited from initial analysis of the interview transcripts. From these two processes the final themes of delay in diagnosis, pain, dyspareunia, treatment, work and social relationships, the workplace, and the future emerged.

Findings: Despite the existence of severe pain, often described as 'intense' or 'overwhelming', women experienced delay in receiving a diagnosis of endometriosis, and their symptoms were frequently trivialized or normalized. This, and the limited effectiveness of treatments, affected relationships with partners and family, work, and sexual relations, although individual experiences in each area were diverse.

Conclusion: The experience of endometriosis pervades all aspects of a woman's life. This experience is compounded by the side effects of many treatments. Women with this disease need to be taken seriously, and not have their pain trivialized or normalized. Nurses are often well-placed to assist patients in receiving sensitive and appropriate care.

MeSH terms

  • Adaptation, Psychological
  • Attitude to Health
  • Dyspareunia / etiology
  • Endometriosis / diagnosis
  • Endometriosis / psychology*
  • Female
  • Humans
  • Patient Satisfaction
  • Quality of Life / psychology
  • Women's Health