Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain

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.

The Subjective Experience of Dyspareunia in Women with Endometriosis: A Systematic Review with Narrative Synthesis of Qualitative Research

“…The results of quality assessment for the included studies are reported in Table 2. According to the quality ratings, there were no low-quality studies, six moderate- [21,22,[24][25][26]28] and 11 high-quality studies [6,13,23,27,[29][30][31][32][33][34]. Therefore, no studies were excluded from this review due to poor quality.…”

“…This theme related to women's subjective perceptions and descriptions of dyspareunia and was identified in 9 studies (53%) [13,[21][22][23]26,27,29,31,32]. In a study by Fauconnier et al [29], that included 41 patients with endometriosis, women talked about sex as an extremely painful experience, "as if someone was sticking a needle" in their pelvis, or as if their "flesh was laid bare, a kind of electric feeling" (p. 2689).…”

“…Pain can be experienced during and/or after intercourse (for hours or even for days) [27] and is mostly described as pain in the pelvis or pelvic organs (cramps, stabbing sensations, or severe convulsions), although women may have difficulties naming the specific site of their dyspareunia [13,26,29,31]. In the context of endometriosis, many women report pain at deep penetration, and/or painful penetration at the beginning of sexual intercourse (pulling, stinging, burning sensations), and/or pain at orgasm [13,32]. In some instances, pain is associated with specific sexual positions [13].…”

“…The negative impact of dyspareunia on multiple psychological dimensions (reflected by the third theme) has been highlighted in 11 studies (65%) [6,13,22,23,26,27,[30][31][32][33]35]. In a grounded theory study by Facchin et al [6], loss of interest in sex and complete avoidance of sexual intercourse was reported by women with clinically significant symptoms of anxiety and depression.…”

That was the year that was

“…The most cited paper (n = 14) is from Smith et al 1 (Online first in September 2018) on musculoskeletal pain and social isolation/loneliness, while there is a close race for the most read between Drabble et al 2 ’s qualitative paper on the experience of endometriosis pain and the eloquent model of Hill 3 suggesting that chronic pain is a consequence of dysregulated protective action.…”