Pain is often the reason to consult a medical professional. Yet pain is subjective by definition, and the degree and nature of pain are difficult to validate in a clinical setting (1, 2). In endometriosis (3–5), decisions about treatment are difficult because no curative treatment has been developed yet. Nevertheless, it is crucial for the quality of life of an individual with endometriosis that clinicians address the different forms, timing and impacts of endometriosis-related pain (6). This entails respect for a woman's views and circumstances and an understanding of the physiology, meaning and impact of pain.

That clinicians perceive and act on women's pain differently from men's pain (7, 8), and that women perceive (9, 10) and report pain differently from men is well-described. Women's pain experience may be modulated by the menstrual cycle itself (11), and reflect hormonal and metabolic differences (12), as well as ways of communicating pain (13). Chronic pelvic pain for both men and women is private, complex, and hard to communicate (14), but gender frames impacts on career paths, family roles and health care experiences differently.

Endometriosis is associated with multiple pain processes, involving inflammatory factors, ingrowth of pain fibers, and mechanical irritation by adhesions (3, 15–19). Some persistent endometriosis pain may reflect central sensitization (17, 20, 21), and may be principally reversible (22). Hence, central sensitization needs to be treated differently from other sources of pain (23).

These pain processes are fundamentally temporal: they can vary across the day, through menstrual cycles and across life stages. The priorities and coping practices of girls or women also change over time. Endometriosis has a large inheritable component (24, 25), a family history of individuals can often be found and can influence clinical decision-making for women with symptoms of endometriosis. In particular, the family narrative about menstrual pain can be influential in driving or impeding a search for diagnosis of endometriosis (26, 27).

As endometriosis is largely characterized by pain, its diagnosis relies upon clinicians recognizing and responding to descriptions of this pain (28). Pain can be reported in terms of its somatic attributes (29) or its functional impacts (30). A woman may communicate the significance of the problem by referencing the way it influences her life, and different desired outcomes. In sharing her experience of pain with a clinician, a woman may expect a diagnosis, a prognosis, a medication or a treatment plan, an exploration of the impact of comorbidities or family circumstances, or words of encouragement and compassion.

There is an emerging literature on the experiences of women with endometriosis, which highlights the breadth of its experiences upon their lives (31–33). However, there is relatively little work exploring the ways women experience their interactions with clinicians when communicating about their pain (34–38). In particular there are few comparative qualitative studies which address the experience of women with endometriosis navigating the health systems of different countries (39–41) or, more generally, the possibility of learning from patients (42). By describing patients' strategies and focus on communicating aspects of pain as important indicators of pathology we demonstrate new ways to better understand endometriosis.

Here we report the experiences of endometriosis pain described by affected women, and how this relates to communications with clinicians in Australia and France, two countries with state-supported health insurance systems, with differences in gatekeeper functions, avenues and networks of communication, and publicly-funded services. This approach locates the individuals' experience in different sociopolitical settings and throws light on the ways the health system itself and the social structures and processes may impact upon women's communication of pain.

There were 26 participants, 13 from Australia and 13 from France. Ages for the Australian participants range from 24 to 63 Years (Median, 32), and for the French Participants From 19 to 42 Years (Median, 29) (Table 1). There Were one Aboriginal Woman and twelve Anglo-European Women in the Australian Sample, and one Woman of Caribbean Descent and twelve French-European Women in the French Sample. Sixteen Participants (6 Australian, 11 French) Had Postgraduate Education. All French Participants Were Currently Employed in the Paid Workforce or Studying Full-Time. Some Australian Participants Were Family Carers or Students While Most Were Employed in the Paid Workforce.

Seven Australian and three French participants had children. One woman had entered menopause, while the rest were in the reproductive period. All except the postmenopausal participant were taking hormonal medications to manage endometriosis.

Menarche occurred for participants overall at age 12.3 years (SD 1.3). Figure 1 compares the trajectory of French and Australian women through life-phases to diagnosis. Most women developed symptoms at or shortly after menarche in their teens and consulted doctors a mean period of 2.0 years later about their symptoms (range first menstruation to 7 years). The time from onset of symptoms to consulting a clinician was relatively short and uniform. Many women then experienced a significant time-lag from attending a clinician to diagnosis with an overall mean of 8.5 years. The longest delay-to-diagnosis period was reported by women over 40 years of age, reflecting diagnosis practices several decades earlier. Diagnosis in Australia was primarily achieved through the use of laparoscopy (10/13); in France the diagnosis was primarily made through MRI (9/13).

Our study focuses on the experiences and accounts of pain reported by women in Australia and France, and their journeys to diagnosis. Most women reported consulting a clinician within a few years of the onset of symptoms. Most then reported a significant delay between first consulting a clinician and a diagnosis. Our study provides evidence for the critical importance of clinicians paying attention to women's reports of pelvic pain and menstrual symptoms. It also found that the French health system, which offers simpler procedures for accessing specialist expertise and diagnostic technologies, can result in more rapid attention than the Australian health system.

This study's limitations include the fact that the women were all educated and able to participate in a long interview over the internet in English, all indicating the socio-economic status of the sample. Because the ages of our sample varied, it is important to note that some of these problems are a historical experience of older participants. They were more likely to report a longer time-to-diagnosis, perhaps reflecting lower levels of clinician knowledge about endometriosis and less developed investigative tools, as well as the contemporary move toward more active health care consumers.

Most participants described endometriosis-related symptoms and events beginning in adolescence, which spanned the entire fertile part of women's lives. Participants described predominant menstrual pain that often progressively occupied more days during the period with time and more aspects of pain accumulated over the years; thus they described a pattern at odds with normal menstrual pain (50, 51).

The first suspicion of the diagnosis of endometriosis often came from parents. Women who had family members who normalized severe menstrual pain were more likely to realize that their experience might be abnormal by comparing with friends, through information from social contacts or the media. In a 2013 Australian study, young women often had vague or inaccurate concepts of endometriosis and expressed a desire to have readily accessible information available to access online (52). A growing movement of peer-to-peer education through social media is driving access to knowledge and social support for endometriosis in ways that have not previously been available to women (53, 54).

The reasons underpinning delays in diagnosis after women had presented with symptoms to the health system are polyfactorial. Participants described many lost opportunities. Reports of crises and hospitalizations due to severe pain underscore the urgency of seeking the cause of pain. Despite the extra attention and effort typically not much was achieved by Emergency Department attendances, and opportunities to communicate the extent of the problems were lost.

The mean diagnostic delay in our study is consistent with that reported elsewhere (55) for women with surgically-confirmed endometriosis. Given the possibility of easier access but more diagnostic error with radiological investigations (56), there is an urgent need for communication of the significance and limitations of the contemporary imaging techniques and risks of laparoscopy. Patients are mostly excluded from this discussion during consultations, although they will have to weigh up risks and options for themselves. Participants in our study did report awareness of this issue.

Although there were substantial delays in both countries in obtaining a diagnosis, the French health system is more conducive to earlier diagnoses of endometriosis. The national French health system enables self-referral to a gynecologist and does not place restrictions around the ordering of MRIs by general practitioners. In Australia, a definitive diagnosis can only be achieved by a gynecologist (on referral from a general practitioner), with an apparent preference for laparoscopic diagnosis. This means for a patient that she has to overcome several obstacles to convince clinicians of her invisible symptoms. Women prepare for this struggle by carefully assembling evidence, arguments and ways to elicit empathy.

Thus, in Australia women face multiple steps through a health system to reach diagnosis, requiring a coalition of clinicians to agree that endometriosis is a diagnostic possibility, whereas French women face only one or two steps. Earlier diagnosis in Australia would occur if the Australian health insurance system subsidized referrals for specialist ultrasound and MRI examinations from general practitioners to investigate endometriosis, and if specialized endometriosis services were more readily available to Australian women through self-referral. For women with severe, long-term endometriosis requiring costly treatment the French health system also affords extra support through recognition of their condition as an Affection Longue Durée.

Several women in our study had developed their own monitoring systems for pain. Tools such as the McGill Pain Inventory are reliable instruments for describing pain; indeed, women in this study spontaneously demonstrated competence in using terminology across the three domains of this inventory, and beyond. Their use of war-like metaphors is in line with those frequently used in medical literature (57, 58) to address difficult, significant problems, including communication with clinicians (59, 60). This is not, then, an example of incommensurable medical discourses between a patient-centered discourse on pain and a clinician-centered discourse on signs (61). Instead, it appears to be a failure of imagination on the part of the clinicians consulted by our informants who often explained away symptoms on the basis of existing negative tests or interpretations of pain behaviors. In a French study preoperative endometriosis patients gave largely overlapping but more complete descriptions of their pain symptoms than expert gynecological surgeons (62). Content reviews of medical curricula in a number of countries indicate relatively little attention to menstrual health (63, 64). Medical curricula are known to under-address pain management and responses to pain in clinical skills training (65, 66). This combination of under-representations creates a risk for women with endometriosis symptoms characterized by pain, with graduates having little preparation for responding to the needs of their patients with endometriosis symptoms.

We urge clinicians to collaborate with their patients with severe menstrual symptoms in monitoring their pain using standardized tools as well as patient developed indicators and assessing with them its impacts upon their quality of life. Details of individual circumstances and life stage are also important to guide the clinician's attempt help their patients. Endometriosis has complex impacts on the lives of many women. Attention to and respect for the reported experiences of women can assist in containing and handling the pain associated with it and drive earlier diagnosis.

The datasets presented in this article are not readily available because data might be identifiable. Requests to access the datasets should be directed to SI, susanne.ilschner@anu.edu.au.

The studies involving human participants were reviewed and approved by Australian National University Human Research Ethics Committee (2019/933). The patients/participants provided their written informed consent to participate in this study. Written informed consent was obtained from the individual(s) for the publication of any potentially identifiable images or data included in this article.

SI conceived the study and conducted the interviews. SI, MP, CP, and TN analyzed the interview data. SI and CP wrote the article. All authors contributed to the article and approved the submitted version.

SI was funded through an Australian Government Research Training Program (AGRTP) Stipend Scholarship.

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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