Pain experience and social support of endometriosis patients during the COVID-19 pandemic in Germany – results of a web-based cross-sectional survey

Abstract

Background Endometriosis is a chronic pain condition in premenopausal women. Pain is mainly characterized by pain intensity and may induce disability in all areas of daily life. Nevertheless, pain is influenced by emotional and social factors as well. Social distancing measures or quarantine, as reaction to rapidly rising infections with the COVID-19 virus due to the SARS-CoV-2 pandemic, were implemented across Europe to prevent the spread of the virus and social distancing measures were imposed by the German government by beginning of March 2020 with initiation of the lockdown by the end of March 2020. The objective of this study was to assess, how social distancing measures during the lockdown impacted the various aspects of pain perception in a group of chronic pain patients, such as women suffering from endometriosis. Methods Between 6th to 27th April 2020, an online questionnaire was activated at internet platforms of endometriosis patients support groups. Participants were asked retrospectively at one time point about their visual pain intensity measured by the visual analogue scale (VAS) and pain disability via pain disability index (PDI) prior to initiation of social distancing measures in Germany (VASP, PDIP), as well as the pain intensity and pain disability since implementation of social distancing measures (VASI, PDII). Differences of VAS and PDI previous and after implementation of social distancing measures were displayed as ΔVAS and ΔPDI. Pain experience and social support were assessed by a 5-point Likert scale. Results 285 participants completed at least one question regarding pain intensity, disability, pain experience or social support. Dysmenorrhea, the symptom with the highest level of pain assessed by VAS, decreased significantly during the SARS-CoV-2 pandemic compared to the time period prior to social isolation (45.30% respondents experienced improvemenet vs 40.50% who experienced worsening; p = 0.025). The global physical impairment improved significantly (improvement of pain induced disability in 48.20% vs 40.90% with worsening of pain symptoms; p = 0.032) after the implementation of social distancing measures. Pain experience was negatively affected by social distancing measures, since frequency of pain awareness increased in 43.6% (p<0.001) of participants and 30.0% (p<0.001) more participants experienced pain as a threat. Verbalization of pain experience was reduced in 36.6% (p = 0.001) of participants and 14.6% (p = 0.91), 21.9% (p<0.001) and 31.5% (p<0.001) of participants reported less social support from their partner, family and friends. Conclusions Physical pain and disability on one hand and emotional and social pain experience on the other were differentially affected by the emerged emotional, social and health care constraints related to the SARS-CoV-2 pandemic.

Mental Health and Social Support Are Key Predictors of Resilience in German Women with Endometriosis during the COVID-19 Pandemic

“…Perceived increased social support regarding pain experience, provided by the partner, family, and/or friends, proved to be the strongest independent influencing factor of resilience. These findings are highly significant, as social support may be negatively affected not only as a result of contingency measures due to the pandemic [7], but also by various life adversities within the respective women's social networks, such as interpersonal conflicts [60,66]. A previous study showed that the level of perceived social stress was inversely associated with the rate of positive affect in women with fibromyalgia, another chronic pain condition [60].…”

“…The induced chronic, inflammatory reaction of the abdominal cavity leads to a variety of unspecific symptoms, including dysmenorrhea, dyspareunia, non-cyclic pelvic pain, or infertility [1][2][3][4][5]. Additional symptoms, such as the deterioration of social and mental well-being [1][2][3][4]6], may arise in particularly vulnerable people as a result of a substantial diagnostic delay of up to 10.4 years in Germany [4,7]. Chronic pain has been identified as a risk factor for adverse mental outcomes [8], and permanent pelvic pain has been recognized as a predictor for poor psychological health and increased perceived stress in women with and without endometriosis [9][10][11][12][13][14].…”

“…Women in need of medical support, such as during pregnancy or the postpartum period, seem to be especially susceptible to a deterioration of physical and mental health [40][41][42][43]. During the COVID-19 pandemic, women with endometriosis reported a perceived decline in social support [7]. Chronic pain patients appear to be particularly vulnerable to the negative psychological impacts of social isolation, possibly because they entered the pandemic with fewer social resources than healthy controls [44].…”

Predictors of Psychological Distress in Women with Endometriosis during the COVID-19 Pandemic

“…It is defined by the growth of endometrium-like tissue outside the uterine cavity, which causes a chronic, inflammatory response. Several studies have revealed a diagnostic delay of up to 10.4 years in Germany due to the variety and non-specificity of symptoms [2,3]. As a result, many women experience a variety of symptoms, including chronic pain, pain-induced disability, infertility, and a decline in social and mental well-being [1,2,4,5].…”

“…Public health measures such as social distancing, quarantine, and economic lockdown were implemented to prevent the spread of the disease [17], but the above-mentioned preventive measures could on the other side harm mental health [14,17]. Accordingly, women with endometriosis showed an increased social and emotional vulnerability during the COVID-19 pandemic [3], making them more susceptible to mental disorders.…”