AUTHOR=Ilschner Susanne , Neeman Teresa , Parker Melissa , Phillips Christine 

TITLE=Communicating Endometriosis Pain in France and Australia: An Interview Study

JOURNAL=Frontiers in Global Women's Health

VOLUME=Volume 3 - 2022

YEAR=2022

URL=https://www.frontiersin.org/journals/global-womens-health/articles/10.3389/fgwh.2022.765762

DOI=10.3389/fgwh.2022.765762

ISSN=2673-5059

ABSTRACT=Endometriosis is characterized by persistent, fluctuating pain associated with menstruation, a biological function which is socially invisible. The degree and quality of pain cannot easily be measured, observed, or documented. Difficulties in communicating pain pose particular challenges when seeking diagnosis and support from health professionals. In this paper we explore the experiences and characterization of pain by thirteen Australian and thirteen French women with endometriosis. Data were collected through semi-structured interviews using a life-history approach to illness symptoms, diagnosis and treatment. On average, initial pain symptoms were identified 2.1 years before consulting a health practitioner, after which women reported pain symptoms 8.5 years prior to diagnosis; that is, the time between consulting a clinician and receiving a diagnosis was almost four times the period between experiencing symptoms and consulting a doctor. We outline the types of pain experienced, the impact of pain on women’s lives, the meaning of pain in different settings and the role of women’s pain in the family history. Pain was often "made real” to doctors by findings consistent with endometriosis on ultrasound and MRI, mostly used in France, or laparoscopy, the predominant diagnostic tool in Australia. No woman described her practitioner using standardized pain assessment tools. Thus, the validation of pain relies largely on disease visibility and the clinician-classified degree of severity rather than self-reported grades of pain or impact on activities of daily living. The invisible and enigmatic pain of this chronic women’s disease remains difficult to communicate to doctors, and the recognition of severe pain is often key to timely diagnostic procedures. Clinicians need to be more proactive about severe pain related to menstruation, taking into consideration women’s individual circumstances, and maintain a high index of suspicion of underlying endometriosis as a condition characterized primarily by pain.