“Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health

Distressed and non-distressed women with endometriosis report disruption in their lives.

Key Points

Importance

• This is the first qualitative study to consider individual differences when exploring the relationship between endometriosis and psychological health. Researchers specifically investigated why some women have clinically significant distress, while some others do not, although affected by the same disease.

What’s Done Here

• Open interviews were conducted with 74 women with a surgical diagnosis of endometriosis.
• Participants completed the Hospital Anxiety and Depression Scale to determine whether they were distressed or not distressed.
• As this study aimed to develop a grounded theory of how endometriosis affects psychological health, data analysis was performed throughout data collection using a constant comparative method.
• Codes were created and emerging themes discussed by the research team, with feedback from gynecologists as well as women members of a non-profit endometriosis association.

Key Results

• The common aspects of living with endometriosis for distressed and non-distressed patients emerged as four themes: experiencing pain, having a chronic disease, dealing with anticipated or ascertained infertility, and needing specialized and multidisciplinary care.
• The key differences between distressed and non-distressed participants were that while distressed women described experiencing a disruption in multiple domains of their lives, non-distressed women described initial disruption which subsided, followed by an adjustment to the disease. The theme experiencing disruption versus restoring continuity was therefore at the core of the grounded theory.
• Key differences between distressed and non-distressed women with endometriosis were seen in their time to diagnosis, communication of diagnosis, quality of doctor-patient relationships, current presence of symptoms, intimate relationships, financial support, female identity, the impact of infertility, body image, sexuality, and meaning of life with endometriosis.

Limitations of the Study

• The sample was culturally homogeneous, thus the important role played by cultural beliefs may have been underestimated.
• Patients were recruited from the same clinic, limiting the generalizability of results.

Lay Summary

Researchers from the Catholic University of Milan and the University of Milan note in Journal of Health Psychology that although qualitative research describes the negative impact of endometriosis on quality of life and psychological well-being, studies that analyze individual differences between women are lacking. Therefore, they conducted a grounded theory study aimed at providing a broader understanding of how endometriosis affects women’s psychological health, specifically looking at differences between distressed and non-distressed women.

Both distressed and non-distressed participants reported common aspects of living with endometriosis, categorized into four themes by the researchers: experiencing pain, having a chronic disease, dealing with anticipated or ascertained infertility, and needing specialized and multidisciplinary care. The key difference between the two groups was that while distressed women described experiencing disruption, non-distressed women described restoring continuity. Distressed participants described disruption in multiple domains of their lives: everyday normal activities, including work, plans for the future, intimate and interpersonal relationships, and the sense of identity. In contrast, non-distressed women reported that endometriosis caused initial disruption, but they described adjusting to the disease and finding an individual way to live with it.

Distressed participants shared similar experiences, including a slower track to diagnosis, poor communication of diagnosis, negative physician-patient relationships, current active pelvic pain, low social support, poor intimate relationships, negative sense of female identity, negative body image, loss of interest and avoidance in sex, and described themselves as pessimists and anxious. In contrast, non-distressed women reported quick diagnosis, good communication of diagnosis, positive physician-patient relationships, no current symptoms, supportive social relationships, strong intimate relationships, positive sense of female identity, positive body image, active sex life, and they were optimistic and accepting of their disease.

The authors state that “at the core of our theoretical construction is the process of experiencing disruption versus restoring continuity” and note that “endometriosis may cause a huge amount of distress when the women affected experience their disease as an irremediably disruptive event”. They especially emphasize the need to improve factors related to medical professionals such as time to diagnosis, the way in which the diagnosis is communicated, and the overall quality of doctor-patient relationships, which are major risk factors for these patients. They also state that psychological interventions may need to be delivered to those patients with a negative sense of identity caused by the disruption. Furthermore, they note personality may play a role in experiencing disruption versus restoring continuity and suggest further research be conducted in this field.

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/28810386