A link seems to exist between psychological/cognitive factors and the pain experience of women with a diagnosis of endometriosis, according to a study in the Clinical Journal of Pain. The Italian study found that the pain experience was associated with the need for control, worry personality trait, negative emotions such as powerlessness, ruminative/self-blaming/catastrophizing thoughts, and emotional and cognitive suppression attempts.
The main stressors and concerns of women with endometriosis are acute pain experience, persistent fear of its occurrence, its unpredictability and the difficulty in controlling the pain, according to the authors. The study was motivated by initial interviews with women referred to outpatient services for their endometriosis pain.
“Together with gynecologists, we noticed that some of these women showed pain symptomatology that did not correspond to the severity of the disorder, the localization or the stage,” said first author Cristina Zarbo, PhD, a clinical psychologist and a research fellow in clinical psychology at the University of Bergamo in Italy. “Indeed, some women reported low pain intensity, despite a high stage of the disorder, while other women reported high pain inexplicable with the ecographical exam.”
As a result, the investigators started exploring the link between pain and psychological factors, beginning with a cohort of 162 women with endometriosis, of whom 60 were recruited from a hospital in North Italy and 102 from virtual support groups, medical forums and websites. The study included both quantitative and qualitative investigations.
“The frequency at which the term ‘control’—a core factor of worry personality trait—appeared in the narrations of these women surprised me,” Dr. Zarbo told Contemporary OB/GYN. “This includes the need to control the pain, the symptomatology, the thoughts, the emotions and daily life in general. There are also the restless attempts at control and related-control issues like the unpredictability of pain, the powerlessness to successfully control pain, the medical difficulty to control symptomatology and the inability to control thoughts and emotions.”
For example, 58% of women with high-pain experience reported worry personality trait, and a large portion of them declared, “This was something I could not control, and this is the thing that bothered me the most.” In addition, 66% of women reported pain intensity greater than 6 (on a scale from 0 to 10) over the past 3 months. Also, in the high pain group, 41 women (51%) reported high catastrophization levels as coping strategy for facing stressors in daily life.
Women with endometriosis who reported higher pain in the last 3 months showed nearly twice the level of rumination as a coping strategy than women with endometriosis and lower pain. Ruminative thoughts were mainly guilt about the past (these women do not forgive themselves because of their own forgetfulness) and anxiety about the future (such as pain recurrence, and possible negative and terrible consequences of the pathology and the pain).
Based on study results, Dr. Zarbo recommends that the medical team evaluating and treating women with endometriosis include a clinical psychologist to provide support during these complex processes, as well as assess presence of inefficient coping strategies, maladaptive thoughts, worry personality and psychological distress.
There should also be physical space allocated for the clinical psychologist to interact with these women about issues and challenges they face, and provide more efficient coping strategies.
“Endometriosis is ‘the invisible disease,’ a devastating and disabling condition that truly affects the everyday life of these women,” Dr. Zarbo said. “These women often suffer because their illness is still not socially recognized, and often they are not believed by relatives, partners, colleagues and the whole society.”
The women invite Dr. Zarbo into their “troubled world, where even going shopping or spending a weekend outside becomes an extremely tortuous experience,” she said. Dr. Zarbo said that researchers and the medical community cannot forget the increasingly evident role that the mind has on the body, and the influence that thoughts and emotions play in pain experience in this population.
Dr. Zarbo reports no relevant financial disclosures.