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.
The goal of this research was to characterize the physical experience of endometriosis-associated dyspareunia in the words of people affected by this condition.
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.
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.
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.
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. Wahl KJ, Imtiaz S, Lisonek M, et al. Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain. Sex Med 2020;9:100274.

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