Experiences of women with endometriosis: An Interpretative Phenomenological Analysis.

Background: Endometriosis is a common, yet enigmatic chronic gynaecological condition, with an unknown aetiology and no cure, affecting approximately 6-10% of females of a reproductive age. Symptoms include heavy menstrual bleeding, pelvic pain, fatigue and infertility which has a negative impact on daily living. Clinical research aiming to establish the cause of the condition and to develop treatments is ongoing; however, there is a lack of research investigating what it is like to live with the disease. \nAim: The aim of the study was to examine the experiences of women with a surgical diagnosis of endometriosis. \nMethods: Semi structured interviews were carried out with 13 women. Interviews were transcribed verbatim and data analysed using Interpretative Phenomenological Analysis (IPA). Analysis revealed five key themes: making sense, impact on daily life, identity, taking back control and legitimisation. \nResults: Women reflected upon the journey they travelled in trying to make sense of their symptoms. Diagnosis enabled a fuller understanding of their condition and facilitated increased knowledge and support. The condition impacted on all aspects of daily life and psychological outcomes to the point where women felt controlled by the disease. Identity and sense of self was challenged through changes in their ability to fulfil expected social roles, with women trying to maintain their past identities by minimising the reality of their symptoms. A variety of coping skills were employed to take back control over their lives. Finally, normalisation of symptoms by medical professionals, family members and lay public reduced the legitimacy of the condition and made self-management difficult. \nviii \nConclusion: There is a general lack of knowledge, acceptance and support for women with endometriosis. Qualitative studies such as this one add the contextual information required to understand what it means to live with endometriosis. However, improving the quality of life of women with this debilitating condition requires further understanding of their lived experiences.