Experiences of pain communication in endometriosis: A meta-synthesis

Nastasja Robstad: project administration, screening, data extraction, quality appraisal of included studies, data analysis. Anita Øgård‐Repål and Kari Hansen Berg: screening, data extraction, quality appraisal of included studies, data analysis. Gudrun Rohde: screening, data extraction, data analysis. Jannicke Rabben and Anita Paulsen: screening, data extraction, quality appraisal of included studies. All authors: conceptualization, planning and design, writing manuscript, approval of the final version.

In this review, 31 studies represented by 37 reports were included. Ten reports/papers reported findings from four studies, while the other 27 papers were from individual studies. The characteristics of the 37 reports are summarized in Table  3 . The reports/studies were published from 2003 until 2023. Also, 27 papers reported on qualitative results from individual ( n  = 20) or focus group interviews ( n  = 7), three on qualitative surveys results and five on mixed methods results. Included studies were conducted in Europe ( n  = 19), North America ( n  = 3), South America ( n  = 1), Africa ( n  = 1), Middle East ( n  = 1), and Australia ( n  = 13). Three studies were conducted in more than one country. Study participants were women ( n  = 4787) and healthcare professionals ( n  = 55). The participants were recruited via open advertisement (9), patient organizations/support groups (7), healthcare services, or other settings (21). Characteristics of included studies. Abbreviations: HRQoL, health‐related quality of life. Qualitative findings of patients with endometriosis and healthcare professionals' experiences about communicating pain across 37 reports were synthesized. Through the analysis, three themes were developed: “Navigating the double burden,” “Lack of mutual understanding,” and “The complexities of conveying pain.” Living with endometriosis, the psychological burden of not being believed by healthcare professionals compounded the symptoms, creating a double burden. Many patients in the included studies described feeling dismissed and disbelieved when they communicated their pain to healthcare professionals. 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 Patients experienced that pain symptoms were unrecognized or not taken seriously by healthcare professionals. Many were struggling to convince their healthcare professionals that their pain was real, not something they had exaggerated or imagined, 20 , 21 , 25 , 28 , 29 , 30 , 31 , 33 , 34 , 35 , 39 , 40 , 42 , 43 , 45 , 46 , 47 , 50 , 51 or that they were drug seeking. 22 , 27 , 32 , 44 , 49 , 50 You have to in some way convince them that it is like this and that… They think that you exaggerate, and you need to try hard so that they believe you, because they don't. You experience that immediately, that they don't believe you. (Woman 9, diagnosed six years ago) 21 You have to in some way convince them that it is like this and that… They think that you exaggerate, and you need to try hard so that they believe you, because they don't. You experience that immediately, that they don't believe you. (Woman 9, diagnosed six years ago) 21 The struggle of not being believed was for some of the patients also elucidated in terms of not being listened to or experiencing a lack of attentive listening from healthcare professionals. 22 , 29 , 35 , 36 , 47 , 50 , 52 Articulating pain symptoms proved to be challenging, and patients sought general practitioners who actively listened and demonstrated genuine interest in understanding their array of symptoms. “My GP continuously for four or more years kept telling me it's simply referred back pain … I'm telling them that I have got deep, deep abdominal pain … for them to simply say, ‘Oh yeah, it's just referred back pain’.” 34 “My GP continuously for four or more years kept telling me it's simply referred back pain … I'm telling them that I have got deep, deep abdominal pain … for them to simply say, ‘Oh yeah, it's just referred back pain’.” 34 Seeking validation and relief from their burden, patients visited many different doctors to be diagnosed. They sought out healthcare professionals who actively listened and genuinely took their pain seriously, 20 , 21 , 23 , 31 , 35 , 36 , 37 , 49 , 50 provided empathetic care and acknowledgment. 37 , 53 Discovering healthcare professionals who invested time and interest in these patients brought about a sense of relief. 49 , 50 “I have never been so thankful for an ER doctor recognizing my pain and symptoms and suggesting that endometriosis may be the cause, and that's where my healing began.” 50 “I have never been so thankful for an ER doctor recognizing my pain and symptoms and suggesting that endometriosis may be the cause, and that's where my healing began.” 50 Aligned with this perspective, some of the healthcare professionals also underscored the significance of attentively listening to the patients concerns, thereby fostering a collaborating interaction. 37 , 53 “They're relieved when they're not just being told to put up with it – I think there is really a sense of … of I guess it's validated really – that is a big first step.” 37 “They're relieved when they're not just being told to put up with it – I think there is really a sense of … of I guess it's validated really – that is a big first step.” 37 An opposing perspective on the concept of “normalization” as a pain communication strategy often led to misinterpretation between patient and healthcare professionals. Healthcare professionals intended to be supportive, emphasizing the importance of reassurance in pain communication, in which underlining the normality of menstrual pain variation could be a part. 53 However, the patients felt that this normalization trivialized their pain and could lead to mistrust. Patients experienced feeling invalidated when healthcare professionals characterized their pain symptomatology as physically harmless and normal. 20 , 21 , 23 , 24 , 25 , 28 , 29 , 30 , 33 , 36 , 37 , 38 , 40 , 41 , 43 , 45 , 47 , 48 , 49 , 50 , 51 , 52 , 54 , 55 The patients recounted instances where healthcare professionals labeled their pain symptoms as a natural aspect of being a woman 24 , 25 , 36 , 38 , 47 , 50 , 54 and suggested that women should anticipate experiencing and coping with pain. 20 , 23 , 24 , 25 , 28 , 35 , 36 , 38 , 51 , 54 “But all doctors have always said was that it is a super normal thing … if the doctor says it is normal, then it is normal.” 52 “But all doctors have always said was that it is a super normal thing … if the doctor says it is normal, then it is normal.” 52 Common understanding was also challenged when the healthcare professionals considered that addressing physical and mental dimensions of pain was crucial for establishing collaborative relationships with patients. 53 Patients, on the other hand, recounted feeling that healthcare professionals attributed their pain as mainly psychological. 22 , 23 , 28 , 32 , 38 , 39 , 41 , 45 The patients felt that their pain was perceived by healthcare professionals as being “in the women's head,” which for many patients reinforced the sense of not being believed, and was experienced as very stressful. 28 , 30 , 38 , 39 , 40 , 42 , 45 , 49 , 50 “They are making us feel like we are crazy, and that this pain, that has us laying in a fetal position on the bathroom floor screaming, is all in our heads and isn't real. They are becoming one with the monster.” 50 “They are making us feel like we are crazy, and that this pain, that has us laying in a fetal position on the bathroom floor screaming, is all in our heads and isn't real. They are becoming one with the monster.” 50 Mutual understanding was obtained when patients received a diagnosis of endometriosis (i.e., a biological explanation for the pain) and gave a sense of finally being believed. 25 , 39 , 50 It was a sense of justification for their perseverance in trying to obtain not only a diagnosis but also anger over the attitudes they encountered from healthcare professionals. This was especially true for those patients who were told that this was psychological. 33 For both patients and healthcare professionals communicating pain was affected by various barriers. 25 , 29 , 30 , 46 , 54 , 55 Patients and healthcare professionals alike experienced difficulties in communicating about the severity and quality of the pain in consultations. The patients reported difficulty conveying sensations and nuances of pain to the clinicians. 25 , 29 , 46 , 54 , 55 Some patients perceived that healthcare professionals only asked about the intensity of pain, but not about the qualitative nature of their pain. 54 Tools like analog scales were seen as inadequate for capturing the full experience of pain by both parts. 29 “They were asked to score different types of pain associated with endometriosis, eg pelvic pain or dyspareunia, but were rarely asked about the quality or duration of the pain, or the effect of the disease on their ability to function or on their relationships.” 25 “They were asked to score different types of pain associated with endometriosis, eg pelvic pain or dyspareunia, but were rarely asked about the quality or duration of the pain, or the effect of the disease on their ability to function or on their relationships.” 25 For improved communication about pain between the patients and the healthcare professionals, both suggested a more comprehensive tool that incorporates a holistic approach, combining visual and numeric scales with patients' descriptions of their pain, including type of pain, and in what situations pain was experienced. 55 “Try to get them to talk about it in qualitative terms as well. So I will always ask people whether it's a cramping type pain, an aching type pain, a stabbing type pain… but I think it can be quite difficult because some people will be describing pain that isn't cyclical and then that makes it harder.” 29 “Try to get them to talk about it in qualitative terms as well. So I will always ask people whether it's a cramping type pain, an aching type pain, a stabbing type pain… but I think it can be quite difficult because some people will be describing pain that isn't cyclical and then that makes it harder.” 29 Addressing issues such as painful sex was associated with feelings of shame and taboo. 29 , 54 , 56 Furthermore, a language barrier between patients and healthcare professionals who did not share the same mother tongue seemed to hinder effective communication, especially during nuanced discussions on sensitive topics like sexuality. 29 “Pain on deep intercourse, deep penetration (…) a lot of people don't openly, talk about that. It's only if you specifically ask that people will tell you that.” 29 “Pain on deep intercourse, deep penetration (…) a lot of people don't openly, talk about that. It's only if you specifically ask that people will tell you that.” 29 Ultimately, a significant communication barrier stemmed from patients' prior experiences. Past disappointments in seeking help influenced how they perceived situations and articulated their pain. 46 Isolation with their pain and symptoms, along with their coping mechanisms, was shaped by feelings of loneliness, perceived weakness, and a sense of inadequacy in managing their pain. 25 , 29

The aim of this meta‐synthesis was to synthesize the results of qualitative studies exploring how patients with endometriosis experience communicating with healthcare professionals about pain, and how healthcare professionals, experience this pain‐related discussion. Our analysis resulted in three main themes: “Navigating the double burden,” “Lack of mutual understanding,” and “The complexities of conveying pain.” In line with previous research from other pain conditions showing that pain communication can be challenging for both patients and healthcare professionals, 57 , 58 we found that the psychological burden of not being believed by healthcare professionals added to the symptoms of endometriosis, creating a double burden. Patients may perceive healthcare professionals as dismissive of their pain severity and its functional limitations. 59 The absence of validation for the lived experience of pain can be distressing for patients seeking support and understanding. This may result in “doctor‐shopping” to seek empathetic providers. 20 , 23 , 31 , 35 , 36 , 37 Healthcare professionals, for their part, may experience anxiety and uncertainty due to lack of training in communication skills or addressing psychosocial issues. 50 , 58 , 60 In this meta‐synthesis, women reported negative experiences of healthcare professionals normalizing their pain. 20 , 21 , 23 , 24 , 25 , 28 , 29 , 30 , 33 , 36 , 37 , 38 , 40 , 41 , 43 , 45 , 47 , 48 , 49 , 50 , 51 , 52 , 54 , 55 A differing viewpoint on the use of “normalization” as a strategy for pain communication frequently resulted in a lack of mutual understanding between patients and healthcare professionals. Dysmenorrhea, which is often the presenting feature in endometriosis, is indeed a common phenomenon, affecting between 16% and 91% of women of reproductive age. 61 Because endometriosis often presents with limited objective manifestations and lack of specific and sensitive biomarkers, it can be difficult to establish endometriosis as the cause of the pain. 62 , 63 In such cases, reassurance, which may include underlining that pain is a normal phenomenon not necessarily indicative of serious pathology, can be an important element of pain communication. 64 , 65 However, as evidenced by this meta‐synthesis, this communicative strategy may cause more distress than relief. In several studies, patients reported feeling dismissed when met by healthcare professionals who downplayed pain experiences by labeling them as “normal” aspects of womanhood. 24 , 25 , 36 , 38 , 47 , 50 , 54 This dismissal can make patients feel as though their suffering is not taken seriously, as well as potentially contributing to delay of diagnosis and treatment. 66 , 67 Our results underline the importance of validating women based on their pain experiences is equally crucial even before a diagnosis of endometriosis is established. Other aspects demonstrating lack of mutual understanding were that several of the patients in the included studies felt that healthcare professionals implied that their pain could be attributed to psychological factors. 20 , 22 , 23 , 28 , 30 , 32 , 33 , 38 , 39 , 40 , 41 , 42 , 43 , 45 , 49 , 50 , 53 , 56 Consistent with previous research, difficulties in pain communication may be especially likely to occur when the pain lacks a simple biological explanation. 60 Cultural bias toward biomedical explanations can further complicate communication for both the healthcare professional and the patient, leading to difficulty engaging with a biopsychosocial model for both parts. 68 , 69 From this meta‐synthesis it seems clear that psychologization of pain was experienced as devaluing by patients, and that a biologically based explanation for the pain (diagnosis of endometriosis) simplified communication between patients and healthcare professionals. This is evidenced by the great relief that patients report on receiving a diagnosis. 67 In terms of recognizing women's experience a biopsychosocial model is recommended to advocate for a more holistic perspective to recognize both the biological, psychological and social aspects of pain. 70 However, this might be a double‐edged sword; our findings indicate that the patients felt disbelieved when questioned about their mental health due to implications that the pain was just “in their head.” A multidisciplinary team with nurses, physiotherapists, counselors and physicians specializing in endometriosis or chronic pain may be useful to reinforce the biopsychosocial perspective and optimize treatment and care for women with endometriosis. 71 This meta‐synthesis highlighted the complexities of conveying pain such as accurately presenting and explaining pain. Both patients and healthcare professionals experienced difficulties in communicating about the severity and quality of the pain in consultations. Existing pain assessment tools such as analog scales were deemed insufficient to capture the nuanced nature of pain from both patient and healthcare professional perspectives. Both patients and clinicians suggested a more comprehensive tool that incorporates a more nuanced description capturing the quantitative and qualitative nature of the pain. 55 Thereby, our findings in this meta‐synthesis supports the results presented in a scoping review by Surrey et al., 72 which pointed to the need for simplified, patient‐centered endometriosis screening tools to facilitate communication and capture the multifaceted nature of the pain experience. Furthermore, addressing dyspareunia, despite its taboo nature, is crucial as it is a common symptom of endometriosis, 73 and could serve as a key indicator for more accurately identifying and diagnosing affected individuals. Recognizing and discussing this symptom in addition to other symptoms, ensures that patients receive appropriate care and support. To the best of our knowledge, this is the first meta‐synthesis of qualitative studies investigating the experiences of endometriosis‐related pain communication, capturing insights from both patients and healthcare professionals. However, there is a greater number of studies capturing the patient's perspective compared to the representation of healthcare professionals' perspective. The recruitment strategy for many of the included articles opens for inclusion bias in which patients with particularly negative communication experiences with healthcare professionals may be more likely to seek inclusion. This may in turn lead to over‐representation of negative experiences in the included articles. Some of the studies had limited data about pain communication. Moreover, our inclusion criteria restricted papers to those published in English or Nordic languages, potentially limiting applicability to non‐English‐speaking cultures. The homogeneity of participants, largely recruited from patient organizations in western countries, may also impact transferability. No studies were excluded based on the quality screening, but the quality of the studies may have had some impact on the outcome. Adhering to Sandelowski and Barosso's meta‐synthesis methodology ensured credibility through meticulous detailing of the design and execution. 74 Transparent documentation of methodological decisions and reflections, including direct participant quotations, maintained dependability. Involving an experienced researcher (IV) to critically assess the analysis process enhanced data stability. Improved descriptions of these aspects might have bolstered individual study validity. Healthcare professionals need training to recognize and address signs of pain effectively, ensuring that patients feel heard and validated. Furthermore, improved tools for pain registration and communication are necessary to facilitate more accurate assessment and understanding of patients' pain experiences. Additionally, development of communication guidelines that acknowledge the impact of pain on daily life is essential for enhancing patient–provider interactions. Emphasizing shared decision making can empower patients to actively participate in their care and improve treatment outcomes.

Our review highlights the intricate nature of pain communication between patients with endometriosis and healthcare professionals, revealing patterns of disbelief, normalization, and psychological attribution. Healthcare professionals who take time to listen carefully, employ a patient‐centered approach and use empathic communication evoke a sense of relief in the patient. Although the biospychosocial model and use of reassurance are widely considered important, this review shows that these techniques can potentially result in feelings of dismissal and perceived psychologization on the part of the patient. These techniques should thus be used with sensitivity and validation of the patient's experience, regardless of diagnosis. Both patients and healthcare professionals lack a common language for communicating and understanding pain, highlighting the need for further research to develop effective communication strategies and enhance patient care, especially considering the importance of cultural awareness when interacting with patients from diverse cultural backgrounds.

Endometriosis is the most common cause of chronic pelvic pain in women and affects approximately 10% of women of reproductive age. 1 Exact prevalence is difficult to determine, due to a diversity in clinical presentation, and lack of noninvasive diagnostic modalities that reliably diagnose endometriosis. 2 Endometriosis is an inflammatory disease that can cause dysmenorrhea, dyspareunia, chronic pelvic pain, back pain, dysuria, and infertility. The pain can be persistent and debilitating despite best‐practice care. 3 Delay of diagnosis up to several years is common, 4 , 5 which may in turn lead to increased personal suffering, emotional distress and feelings of dismissal. 3 , 6 Thus, the subjective experience of pain, diagnostic delays, and changes in quality of life due to endometriosis can profoundly impact the doctor–patient relationship. Although the pain caused by endometriosis is thought to be initially induced by biological tissue changes, 7 it is well recognized that chronic pain is a complex phenomenon within a biopsychosocial model and can seldom be explained by biological mechanisms (inflammatory and structural changes) alone. 8 , 9 Symptomatic endometriosis can impact quality of life across several domains, and studies have shown that pain resulting in emotional distress is a key feature of living with endometriosis. 3 Pain beliefs, a clear understanding of pain mechanisms, and effective coping and self‐management strategies are important for understanding and managing chronic pain. 9 Communication with healthcare professionals plays an important role in influencing these factors by providing information and support. National Institute for Health and Care Excellence (NICE) 10 recommends a patient‐centered approach to communication, focusing on understanding the contributing causes of pain and how the pain affects the person's life. However, a recent systematic review about challenges healthcare professionals face when practicing patient‐centered communication found a range of barriers resulting in difficulties using this type of approach. 11 Endometriosis patients' voice and experience of healthcare provision is increasingly being highlighted from an organizational quality improvement perspective. The healthcare professionals' experience in communication with patients with endometriosis is also an important aspect. The absence of a systematic review on patient experiences of engaging and interacting with healthcare professionals is an identified gap in the literature. 12 The aim of this qualitative systematic review is to synthesize findings on how patients with endometriosis experience communicating with healthcare professionals about pain, and how healthcare professionals experience this pain‐related discussion.

The authors report no conflict of interest.

This qualitative systematic review was based on a registered protocol in PROSPERO, with registration number: CRD 42023425430. 13 The review was guided by the four‐step meta‐synthesis methodology by Sandelowski and Barosso 14 consisting of (1) comprehensive systematic literature search and retrieval of relevant research reports, (2) appraisal of included studies, (3) classification of findings, and (4) meta‐summaries and synthetization of the findings. We report this study in adherence to the PRISMA 2020 checklist in Table  S1 . 15 A search strategy was developed in collaboration with a librarian with expertise in systematic literature reviews. During the development of the search strategy, several test searches were performed to identify keywords and relevant terms. These showed that the term “communication” was especially challenging, because it is a concept that can contain a broad variety of meanings. Using “communication” and similar terms in the search blocks limited the search and resulted in few records. Therefore, we decided not to include the concept of communication in the search, and instead screen a larger number of records and reports, to avoid missing studies. The complete search strategy is presented in Table  S2 . We conducted the initial search in CINAHL PLUS with full text (Via EBSCO host) and MEDLINE (via EBSCO host) on May 12, 2023. We re‐ran the exact same search January 26, 2024. Searches were supplemented by backward searching reference lists and forward searching citations of included reports in Scopus and Google Scholar. We included papers reporting qualitative or mixed method primary research studies, published in full‐text, peer reviewed journals, and written in English or Scandinavian languages on patients with endometriosis and healthcare professionals experiences in communicating about pain. Quantitative studies, reviews, gray literature, and studies focusing on the development or testing of written or digital pain tools were excluded. Studies from all clinical contexts were eligible for inclusion. We included studies reporting on studies on two population groups: (a) patients diagnosed with endometriosis with pelvic pain (dysmenorrhea, dyspareunia, pelvic pain), without specification of age, ethnic group, and irrespective of being submitted to any treatment or intervention, and (b) healthcare professionals (eg general practitioners, gynecologist, and nurses). In the first step, all identified records were imported into Endnote X9 for removal of duplicates, and unique records were exported to Rayyan Screening tool 16 for screening of title and abstract. Screening was performed independently by a minimum of two reviewers (either NR/AØR, GR/JR, KHB/AP). In the next step, full text papers were assessed for eligibility, also independently by a minimum of two reviewers (all authors). Disagreements were resolved by discussion until consensus was reached, involving a third member of the team if needed. Reason for exclusion was stated for each record assessed in full text. Backward and forward citations searching of the included reports was distributed between authors (NR, GR, JR, EWK, AP, AØR, KHB, ACH), with inclusion of additional studies decided by a minimum of two authors. Papers included in this process were also checked for additional references or citations. Figure  1 presents a PRISMA flow diagram showing the process of screening and inclusion. PRISMA 2020 flow diagram. The authors independently assessed the included full‐text papers using the methodological quality criteria outlined in the Critical Appraisal Skill Program (CASP) checklist for evaluating qualitative research. 17 Each paper was rated by two authors (GR/NR, AØR/KHB, JR/ACH, and EWK/AP). When a scoring discrepancy occurred between raters, a third author mediated. The authors jointly agreed on a final quality evaluation, using the described criteria in CASP for independent assessment. 17 Figure  2 details the critical appraisal of all included papers. Critical Appraisal Skills Programme (CASP) checklist for qualitative studies. +, yes; −, no; ?, can'tell. Extraction of study characteristics was performed by the research members during quality assessment, and a team of two (JR/EWK) checked all extracted information for accuracy. Included papers were imported into NVivo QDA software for further analysis. 18 The papers result/findings section were extracted for analysis, including both illustrative quotes and study authors' interpretations of study participants' experiences related to pain communication between patients with endometriosis and healthcare professionals. Quotations presented in results are therefore either illustrative quotes from the original study, or quotes from study authors' interpretive text, indicated for each quote. Findings were analyzed thematically, using the approach described by Thomas and Harden. 19 Their approach involves an inductive line‐by‐line coding of findings, development of descriptive themes, and generating analytical themes. This method for synthesizing findings was selected for this study as they describe a process suitable for synthesizing findings across studies with variable aims not directly answering the research question. The analysis was conducted by five of the authors (NR, GR, KHB, AØR, ACH), and further discussed by all authors. Coding and development of descriptive themes were conducted first individually by the five authors, then as a group comparing and discussing codes and descriptive themes. Supported by NVivo, a hierarchical tree of codes was generated. In the last stage, analytical themes were generated through a repeated process of considering how the descriptive themes answered our review question. Analytical themes were discussed and revised in discussions with all authors. Table  1 presents an example of the analysis process. Examples from the analysis process. Following the updated search, findings from new studies were integrated into existing themes. The new included studies did not result in additional or revised themes but supported and strengthened the previous analysis. Table  2 details which study findings contributed to which theme. Themes related to each included study.

Table S1. Table S2.