Addressing Challenges in Endometriosis Pain Communication Between Patients and Doctors: The Role of Language

Abstract

Introduction: In the context of the complex medical, social, and economic factors that contribute to endometriosis diagnosis delay and its consequent impact on quality of life, this report focuses on patient-practitioner pain communication and examines the role of language in doctor-patient communication. Our study explored what patients and doctors consider challenging and effective in endometriosis pain communication. It further examined what commonly used metaphors by patients could be suggestive, or not, of endometriosis to doctors.Method: A United Kingdom-based qualitative (open-ended question) survey with women with endometriosis (n131) and semi-structured telephone interviews with general practitioners (GPs) (n11). Survey and interview data were analyzed thematically.Results: Both women and GPs reported the Numeric Rating Scale (NRS) to be insufficient as a standalone tool for communicating endometriosis related pain. Both also found descriptions of the quality, location, and impact on daily life of pain to more effective means of communicating pain symptoms. When presented with common metaphorical expressions surveyed women used to describe their pain, not all GPs recognized such metaphors as indicative of possible endometriosis. Further, some GPs reported some of the expressions to be indicative of other pathologies.Conclusion: Findings reveal the importance of language in pain communication and the need for additional tools to help women and doctors find the most effective way to communicate the experience and elicit appropriate investigative care. They also show the need for further investigation into how metaphor can be effectively used to improve patient-practitioner communication of endometriosis related pain.

Feasibility and desirability of screening search results from Google Search exhaustively for systematic reviews: A cross‐case analysis

“…The other was the seventh result in the endometriosis search for the Women's Health review, which was a hint to a recently completed study which had not yet been published 21 . Following correspondence with the authors we ascertained that the study was due publication in journal article format during the period that the review would be undertaken, and thus was included in the review later in the review process 22 . Although the occupational health review Google Search searches were re‐run 11 months after the initial searches for the purposes of this analysis, we did not identify any previously unidentified relevant studies for the occupational health review which were not also identifiable by the bibliographic database searches, i.e.…”

Primary care clinicians’ perspectives on interacting with patients with gynaecological conditions: a systematic review

“…Four studies reported that a proportion of participants had a special interest in gynaecology, which in some studies was achieved through purposive sampling. 17 , 29 , 41 , 43 Other studies used purposive sampling to recruit participants who are routinely exposed to populations or diseases of interest. 30 – 32 , 35 , 37 , 40 This sometimes meant that more female than male participants were included.…”

“…Twenty-five papers published 1998-2023 were included (14-18, 27-46) (see Table 2 and Supplementary Table S3). Four studies reported that a proportion of participants had a special interest in gynaecology, which in some studies was achieved through purposive sampling (17,30,42,44). Other studies used purposive sampling to recruit participants who are routinely exposed to populations or diseases of interest (31-33, 36, 38, 41).…”

“…Stigma or embarrassment of menstrual conditions and symptoms amongst patients (n=8) (14,16,17,27,30,32,33,38) PCCs perceived that there is stigma and embarrassment about menstrual conditions and symptoms. This can include cultural stigma surrounding menstruation and embarrassment about visible signs of bleeding.…”

Mediating Pain: Navigating Endometriosis on Social Media

“…Despite the need for an interdisciplinary approach to pain, throughout Western medicine it is still common for many practitioners to use the “pain scale” in clinical practice, where patients are asked to label their pain on a scale quantitatively from 1 to 10. This tool has been critiqued for its subjectivity and, although other alternatives exist, they are not as commonly practiced ( 62 , 63 ). Despite the prevalence of chronic pain and illnesses, people living with them are likely to experience disbelief and invalidation from their practitioners, which can cause isolation, depression, and emotional distress ( 64 , 65 ).…”