Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain

Abstract

Introduction Dyspareunia has been called the neglected symptom of endometriosis and is underexplored in clinical and research contexts. Understanding the physical experience and patient-important aspects of endometriosis-associated sexual pain can help advance valid measurement of this symptom. Aims The goal of this research was to characterize the physical experience of endometriosis-associated dyspareunia in the words of people affected by this condition. Methods This was a qualitative descriptive study that included participants with current or previous endometriosis-associated dyspareunia recruited from a data registry. Data collection involved semistructured interviews that began with an open-ended question about dyspareunia followed by prompts related to the nature of sexual pain. Main Outcome Measures Interviews transcripts were subjected to qualitative content analysis using a priori (pain site, onset, character, radiation, associations, time course, and exacerbating/relieving factors) and emergent themes. Results A total of 17 participants completed interviews. Mean participant age was 33.3 years and most were identified as white, college-educated, heterosexual, and partnered. Location, onset, and character were important; interrelated features of endometriosis-associated dyspareunia were: (i) introital pain began with initial penetration and had pulling, burning, and stinging qualities and (ii) pelvic pain was experienced with deep penetration or in certain positions and was described as sharp, stabbing, and cramping. Dyspareunia ranged from mild to severe, had a marked psychosocial impact for some participants, and was managed using a variety of treatments and strategies. Conclusion The endometriosis-associated dyspareunia experienced by participants was heterogenous in presentation, severity, and impact. Our findings have implications for the development of valid patient-reported outcome measures of this symptom.

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

“…Understanding how women with endometriosis subjectively experience and deal with dyspareunia is essential for healthcare providers, considering the remarkable impact of this type of pain on women's lives and intimate relationships. Thus far, most research focused on quantitative aspects of sexuality in the context of endometriosis, whereas qualitative descriptions of women's subjective experience of pain during sex were only included in a few studies [13]. It should also be considered that the most common self-report questionnaires used to assess sexual function in women with endometriosis (such as the Female Sexual Function Index and the Female Sexual Distress Scale) are not disease-specific, which further clarifies the importance of exploring how women experience dyspareunia focusing on their own words [13].…”

“…A grounded theory approach was adopted in three studies [6,26,27], and phenomenology was used in other three studies [28][29][30]. Of the 17 included articles, only two [13,31] were specifically focused on endometriosis-related dyspareunia. The remaining 15 articles reported evidence derived from broader studies aimed at exploring the overall impact of endometriosis and its symptoms on women's lives, or women's vs. physicians' perceptions of endometriosis (this specific research question was addressed by Fauconnier et al [29] and by Riazi et al [22]).…”

“…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).…”

“…Other words used by the patients to describe their pain were, for instance, "sharp", "burning", and "deep". In a study by Wahl et al [13], women's qualitative descriptions of dyspareunia severity ranged from "uncomfortable" to "the worst pain" ever experienced, to the point that "nothing could be done" (p. 3). In a study by Denny [21], the pain experienced by one of the participants was so severe that she claimed: "I am in agony" (p. 645).…”