(A) Change in mental health for all responders (medium gray), responders with pre-existing anxiety and or depression diagnosis (light gray) and responders without pre-existing diagnosis (dark gray) presented as percentages (%) (N = 4381). (B and C) Change in (B) pain and (C) fatigue for all responders (medium gray), responders with alterations to their endometriosis medication (light gray) and responders without alterations to their endometriosis medication (dark gray) presented as percentages (%) (N = 4343). Credit: Reproduction and Fertility (2022). DOI: 10.1530/RAF-22-0028
Patients with endometriosis reported worse symptoms and impaired mental well-being, during the first months of the COVID-19 pandemic, according to a study published in Reproduction and Fertility. The research indicates that stress, within the first few months of the pandemic, had a detrimental impact on people from across the world suffering with endometriosis. More than one third reported an increase in their pelvic pain and tiredness levels, as well as disrupted bleeding patterns early in the pandemic.
These data suggest that external stressful events can have a serious impact on the mental and physical well-being of women with endometriosis, and that additional support and health care may be needed during particularly stressful times.
Endometriosis is a chronic condition where tissue similar to the lining of the womb grows outside of it, causing a range of symptoms including pelvic pain, heavy periods, tiredness/fatigue and fertility issues. It’s incurable and affects approximately 10% of women globally, and the symptoms are often associated with impaired mental health and quality of life.
Stress has long been known to exacerbate symptoms of pain and cause mental health impairments but its effects on endometriosis have not been investigated. So, the onset of the global COVID-19 pandemic provided an opportunity to assess changes in symptoms of the condition whilst sufferers were under unprecedented stress.
Lead Researcher Lysia Demetriou and colleagues at the University of Oxford, investigated the effect of the COVID-19 pandemic on the incidence and severity of endometriosis symptoms in 4,717 patients, as well as the impact on their mental health.
Using self-reporting via online questionnaires, patients were asked to provide information on their current (at the start of the COVID-19 pandemic) symptoms compared with six months previously. The survey incorporated standard and reliable measurement scales to assess pelvic pain, bleeding, depression and anxiety. 39% of participants reported worse pelvic pain, tiredness/fatigue and bleeding. Deterioration in mental health was significantly associated with increased fatigue.
Lysia Demetriou comments, “We would recommend that health care professionals take a holistic approach to the assessment of people with endometriosis and understand that stressful events, such as the pandemic, may negatively affect symptoms and that a personalized treatment plan may be more effective.
“Although this study was robust in number and geographical spread, it did rely on self-reported data gathered from online questionnaires. Participants used standardized scales to describe the impact of the pandemic on their endometriosis symptoms and mental health, but these are subjective measures. However, due to the pandemic restrictions the researchers were unable to collect any other supportive data through face-to-face appointments or medical tests.”
The team now plans to explore the longer term effects of the COVID-19 pandemic on people with endometriosis and to understand whether different types of stressful events may have a similar impact on symptoms. A better understanding of the relationship between stress and symptoms may help patients to cope better by enabling them to predict flare ups and act to reduce their exposure to stressful triggers. This could also inform future treatment for women with endometriosis, with more effective advice and allocation of health care resources for the condition.
Lysia Demetriou adds, “It is important for public health bodies to be aware of how a crisis may affect people with chronic conditions, like endometriosis, especially when access to health care is difficult.”
Emma Cox, CEO of Endometriosis UK and author on the study, adds, “Endometriosis UK was pleased to support this study. There is a longstanding lack of research into endometriosis, which we continue to campaign to rectify.
“This study emphasizes the significant, additional mental burden the pandemic created for those with endometriosis, who struggled to access health care treatment and support, and may already suffer with depression, anxiety and other symptoms of mental ill health. These results underline the importance of offering mental health and emotional support to anyone with suspected or diagnosed endometriosis for those want to access it, as part of their ongoing care, treatment and support.
“On top of this, the impact of the pandemic continues to cause major disruption to NHS services, with gynecological services having experienced the biggest percentage increase in waiting lists of any specialty, meaning lengthy waits and delays for those with suspected or diagnosed endometriosis, who already found it very challenging to get the right care and support.”
Lysia Demetriou et al, Stressful experiences impact clinical symptoms in people with endometriosis, Reproduction and Fertility (2022). DOI: 10.1530/RAF-22-0028
University of Oxford