The impact of endometriosis on quality of life has been widely reported (1), concluding that it is multidimensional, complex, and pervasive causing women to feel a sense of powerless and lack of control (2, 3). Such disempowering effect have been attributed to pain normalization and dismissal, which are considered a potential cause of diagnosis delay (4). Additionally, perceived deficiencies in communication to effectively describe pain symptoms in early consultations have been seen to play a role in delaying diagnosis (5) with consequent impact on the physical, mental, and social well-being of women with the condition (6).

The difficulties posed for managing possible endometriosis in primary care have been recently recorded in qualitative research (7). Amongst the challenges for endometriosis diagnosis identified, studies have highlighted the complexity of endometriosis pain types, namely cyclical, functional, and chronic (8) with nociceptive and neuropathic pain characteristics (9). Further to this, the perception of endometriosis pain may also be influenced by other factors such as physical stress, hormonal cycles, and pain-coping strategies (10). Indeed, research suggests the psychological distress caused by endometriosis can heighten the sensitivity to pain (11). Therefore, pain assessment tools should consider not only severity, normally measured through the Numeric Rating Scale (NRS), but also qualitative aspects (12) as a potential way to understand its underlying mechanisms and its interference with physical and emotional aspects of quality of life. Pain assessment tools considering such aspects have indeed been devised by endometriosis specialists (8), but these are mostly used post diagnosis in order to inform treatment. Thus, pre-diagnosis pain complaints are not always systematically assessed through multifactor tools in early consultations.

The communication challenges posed by the lack of visibility, physical manifestations, and experiential understanding of invisible pain, as is the case with endometriosis, leads patients to rely on metaphorical language (13, 14). Metaphor in language refers to the conceptualization of an abstract concept, or domain, in terms of another, usually more a concrete, experiential, and embodied domain, resting on mappings and entailments connecting both (15). However, the nuances of such conceptual frameworks and their manifestation in language use, along with the assumptions brought to the clinical communication by both patients and doctors may pose a challenge for successful communication to take place. A mismatch in assumptions through the use of unconventional language or descriptors that fall outside the expected frames of reference can indeed result in miscommunication. For women living with endometriosis, this can potentially lead to misdiagnosis, pain dismissal, or normalization (5), and subsequent negative impact on quality of life.

Studies of metaphorical language describing chronic pain, including endometriosis, are abundant [e.g., (5, 16)]. However, they mostly focus on patients' metaphorical descriptions of chronic pain, but do not address doctors' perspectives on what such use of metaphors suggests for diagnosis or referrals. Thus, in this study, we aimed to examine what both patients and doctors consider effective and challenging in endometriosis pain communication. Additionally, we explored what common metaphors used by patients can be suggestive, or not, of endometriosis for doctors.

A qualitative design, using an open-ended question survey for women with endometriosis and semi-structured telephone interviews with doctors providing care to those with suspected and diagnosed endometriosis, was used.

The Microsoft Forms, internet-based survey, was distributed via social media using the Twitter account @EndoLanguage, tagging United Kingdom (UK) based endometriosis support organizations. The main criteria for self-selecting participants were to have a diagnosis of endometriosis, be based in the UK and have a proficient level of English to answer open-ended questions. Consent was obtained before proceeding to the survey page. The survey aimed to identify deficiencies in the communication of endometriosis pain during early consultations. This study reports on responses to the following two open questions:

Interviews were conducted with doctors who responded to a call for participants distributed via the same social media site and through endometriosis networks using snowballing sampling. A total of 18 UK-based private practice and National Health Service (NHS) GPs (n11) and specialist gynecologists (n7) were interviewed. In this paper, we report only on interviews with GPs in order to identify communication challenges during consultations prior to referral for further investigative care. Table 1 summarizes GPs demographic information.

Interviews were semi-structured and lasted 20–30 min. Consent was obtained prior to the interviews and data have been anonymized as required by ethical protocols. This study reports on responses to the following questions regarding pain communication:

Survey data was downloaded in an excel spreadsheet. A total of 131 responses were eligible for analysis. The mean time for diagnosis was 9.3 years. GP audio recorded interviews were transcribed verbatim. Both data sets were imported to NVivo11 for analysis where themes and subthemes were identified and verified by the research team [a linguist (Author 1) and medical anthropologist (Author 2)]. The analysis was conducted in line with Clark's (17) protocol for qualitative research outlining Relevance, Appropriateness, Transparency, and Soundness. Tables 2, 3 summarize the main themes emerging in both datasets.

The four metaphorical expressions presented to doctors in interviews (Questions 4a-b above) were a representative selection of those most recurrent in patient survey data. The metaphors were identified by reference to the Pragglejaz Group (18) which works by establishing a contrast between the contextual meaning of an expression with the basic dictionary meaning.

In patient-practitioner communication of endometriosis related pain, both women and GPs find the NRS to be an ineffective (standalone) tool due to the subjectivity of pain and the inability of such scales to capture qualitative aspects of pain. While many GPs use the tool, they do so in conjunction with additional queries (i.e., on pain duration and frequency, location, descriptors, and impact on daily life) to better understand and assess whether such symptoms are indicative of possible endometriosis. Women want GPs to ask such investigative questions about the nature of their pain experiences (i.e., on pain type, location, descriptors, and impact on daily life). Many, however, feel their pain is normalized and/or dismissed by practitioners who did not adequately listen and seek to understand their symptoms.

Women draw on metaphorical language to better capture and articulate their endometriosis related pain. GPs, however, do not always recognize the metaphors women commonly use as indicative of the condition. In some cases, such metaphors were seen by GPs to be more likely caused by other (often neuropathic) conditions.

A limitation of this study is the relatively small number of GPs (n11) who took part. However, given the well-established challenge of recruiting GPs to qualitative research due to their professional time constraints (21), insights gained from the views of such a group are valuable given their paucity. To our knowledge, this is the first UK-based qualitative study to focus on both patients' and doctors' views on endometriosis pain communication, in particular. The mixed disciplinary background of the research team (a linguist and a medical anthropologist) is also a strength of the study.

Both women and GPs view understanding the impact on the quality of (daily) life as key to effectively communicating endometriosis pain, indicating the need for pre-diagnostic screening that incorporates quality of life considerations as well as psychological impact (22). To date, the only endometriosis-specific quality of life tool, the Endometriosis Health Profile-30, is a post-diagnosis instrument (23). Further research on effective pre-diagnosis patient-practitioner communication of pain indicative of possible endometriosis, which incorporates queries around pain location, quality, timing and duration are also needed. Effective communication of pain is collaborative work between patients and doctors. The use of metaphors can improve practitioner-patient communication [e.g., in relation to other serious health conditions, see (24)] and help patients interpret, accept and adapt to pain as a coping mechanism (20). Therefore, further investigation is needed into the effective use of metaphor to enhance patient-practitioner communication of endometriosis related pain in general practice care as well as into improving GPs' understandings of common metaphors employed by women living with the condition.

The original contributions presented in the study are included in the article/supplementary materials, further inquiries can be directed to the corresponding author.

The studies involving human participants were reviewed and approved by Birmingham City University Manchester and Manchester Metropolitan University. The patients/participants provided their written informed consent to participate in this study.

SB and AW contributed to conception, design of the study, collected database 2, and data analysis. SB collected database 1, data analysis, and wrote abstract. All authors contributed to manuscript.

This study was supported by Birmingham City University's Faculty of Health, Education and Life Sciences-Pilot Funding.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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