Sexual Health · Sexual Pain

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

Wahl KJ, Imtiaz S, Lisonek M, Joseph KS, Smith KB, Yong PJ, Cox SM

Published February 2021 Sexual medicine
DOI 10.1016/j.esxm.2020.10.002 PMID 33291043 PMC PMC7930843

RRM Academy Synopsis

Pelvic sex pain in all 17 women with endometriosis, opening pain in 7

Interviewed women reported endometriosis sexual pain in the pelvis and at the vaginal opening. In this interview study of 17 women with dyspareunia (pain with intercourse), pelvic pain mostly began with deep penetration or certain positions. Pain at the vaginal opening began at first penetration. Severity ranged from mild to severe.

Key Findings

  • All 17 participants described pelvic pain, and 7 of them also described pain at the vaginal introitus.
  • Except for 2 participants with pelvic pain at orgasm and 2 after intercourse, pelvic pain began when penetration was deep or in some sexual positions and felt sharp, aching, cramping or stabbing.
  • Pain at the vaginal opening began with initial penetration and felt like pulling, stinging, or burning.
  • Interrupted sex because of pain was reported by 88% of participants, and 59% avoided sexual experiences.
  • 4 participants reported that hormonal treatment (a suppressive medication) relieved their pain, and in 1 instance it also had a negative effect on sexual desire.

Interpretation

This is a qualitative, descriptive study. A researcher interviewed 17 women by telephone and sorted their own words into categories. The percentages describe these 17 women, who came from a registry at one tertiary center for endometriosis and were mostly white, heterosexual and partnered. The authors note that participants were not chosen by surgical diagnosis, so stage and pain could not be compared. They add that earlier clinic visits and high education may have shaped how participants described their pain.

RRM Context

Restorative Reproductive Medicine treats sexual pain as a symptom with a source to find. The authors tie pelvic pain with deep penetration to the usual picture of endometriosis. They tie pain at the vaginal opening to other conditions, such as provoked vestibulodynia or dysfunction of the pelvic floor muscles. Telling these sources apart is evaluation before treatment. Participants described strain on their relationships, and the authors highlight the potential for care that includes partners. RRM is couple-centered.

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. Wahl KJ, Imtiaz S, Lisonek M, et al. Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain. Sex Med 2021;9:100274.

Topics

By this author

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Sexual Health › Sexual Pain › Dyspareunia · General Gynecology › Pelvic Pain › Chronic Pelvic Pain
Kate J Wahl, Shermeen Imtiaz, Michelle Lisonek, Kelly B Smith, Paul J Yong, Susan M Cox
Catherine Wahl, Katherine Wahl, Kathryn Wahl, K Wahl, S Imtiaz, M Lisonek, K Smith, P Yong, Sue Cox, S Cox
PMID 33291043 33291043 DOI 10.1016/j.esxm.2020.10.002 10.1016/j.esxm.2020.10.002 Wahl et al. 2021, Wahl 2021