Abstract
Introduction:Prior research into endometriosis-related pain has focused on specific aspects of the pain experience such as cyclical pain, emotional aspects of pain and certain types of pain such as dysmenorrhea and dyspareunia. However, research has paid less attention to the diversity and complexity of women’s pain experiences, which can lead to failure to recognise some symptoms as part of endometriosis and poor symptom management.Methods:We conducted qualitative semi-structured face-to-face interviews with 20 women in the United Kingdom recruited from an endometriosis self-help group with a diagnosis of endometriosis via laparoscopy. A topic guide framed questions around experiences of pain. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using inductive thematic analysis.Results:Women experienced multiple types of pain that they felt were caused by endometriosis and affected many different parts of the body including bowel, bladder, lungs, kidneys, nerves, upper body, lower limbs and head. These pains consisted of different conceptual categories: type, pattern and intensity. These categories came together to create a complex, interrelated experience for each individual that we termed ‘constellations of pain’ because each woman had a complex set of pain categories and no two individuals appeared to have the same pain experience.Conclusion:The complexity and diversity of endometriosis-related pain found in this study has implications for improving diagnosis, medical and non-medical pain management and improving the clinical encounter between women and healthcare professionals.
Highlights
Prior research into endometriosis-related pain has focused on specific aspects of the pain experience such as cyclical pain, emotional aspects of pain and certain types of pain such as dysmenorrhea and dyspareunia
We argue that research around endometriosisrelated pain to date has discussed some aspects of women’s pain experiences, such as how pain affects their quality of life and the psychological and emotional aspects of pain, but does not offer detailed descriptions of its diversity and complexity
We have presented three conceptual categories relating to endometriosis-related pain: pain types, patterns and intensities.We showed a wide range of variation within each of these categories and how they interrelated to create what we termed constellations of pain that are unique to each woman’s pain experience
Summary
Prior research into endometriosis-related pain has focused on specific aspects of the pain experience such as cyclical pain, emotional aspects of pain and certain types of pain such as dysmenorrhea and dyspareunia. Research has paid less attention to the diversity and complexity of women’s pain experiences, which can lead to failure to recognise some symptoms as part of endometriosis and poor symptom management. Results: Women experienced multiple types of pain that they felt were caused by endometriosis and affected many different parts of the body including bowel, bladder, lungs, kidneys, nerves, upper body, lower limbs and head. These pains consisted of different conceptual categories: type, pattern and intensity. Conclusion: The complexity and diversity of endometriosis-related pain found in this study has implications for improving diagnosis, medical and non-medical pain management and improving the clinical encounter between women and healthcare professionals. Dealing with these consequences and feelings of difference from others mean women struggle to create a sense of coherence across different aspects of their life[28] which can result in poor mental health including anxiety and depression.[16,29,30]
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