Many women with endometriosis know that the condition’s impact can reach far beyond its physical symptoms. Impairments in overall health-related quality of life have been found in women with endometriosis when compared to the general population.1 In order to get a better sense of life with endometriosis, we conducted our 2018 Endometriosis In America survey. Over 1,200 individuals with endometriosis or endometriosis-related symptoms participated in the nearly 100-question survey, which addressed topics such as diagnosis, quality of life, relationships, treatment, symptom management, and more. Overall, women who perceived their endometriosis to be more severe reported having a lower quality of life, and 25% of survey respondents reported that they were not at all content with their quality of life right now.
For any individual, maintaining a high quality of life is a delicate balance of physical, emotional, and social well-being. A shift in (or absence of) any of these components can lead to a decreased quality of life, and can have domino-like effects on all other aspects of health. When learning to cope and live with a chronic condition like endometriosis, all sides of this balanced triangle can be at risk. Throughout the Endometriosis In America survey, we asked respondents about their overall well-being, and what kinds of experiences they had within each specific realm of quality of life. Some of the responses we received are below.
According to survey respondents, the top physical symptoms experienced within the last six months were feeling tired or lacking energy (91% of respondents), dull, throbbing, or sharp pain in the lower abdomen (86%), bloating or “endo belly” (85%), and abdominal pain (80%). Additionally, when asked if they were sleeping well, 53% of individuals responded, “not at all” or only “a little bit”. Physical symptoms like abdominal pain and fatigue can greatly impact a woman’s quality of life, and experiencing difficulties with sleep can further worsen these issues. In addition, physical symptoms and issues with sleep can impact an individual’s emotional and/or social well-being, further complicating quality of life.
Issues with emotional well-being may be the result of regular physical symptoms, lack of sleep, social frustrations, or learning to cope with a chronic (and often invisible) illness. When it comes to their emotional experiences, 42% of respondents said they felt sad quite a bit of the time or very often. Similarly, nearly 40% of respondents said they often feel nervous, and over 70% said they often worry that their endometriosis will worsen. Recurrent feelings of fear or sadness can lead to mental health distress, which can often manifest as anxiety, depression, or other mental health-related conditions. Struggling to emotionally, mentally, and physically cope with a chronic condition can severely impact overall quality of life.
Both endometriosis-related symptoms and emotional distress can lead to a decrease in social well-being. As mentioned earlier, individual aspects of quality of life, such as emotional, physical, and social well-being all co-exist and impact one another. Not only can physical and emotional issues impact social health, but social issues can cause their own detriments to an individual’s physical and emotional well-being.
When it comes to social health, including sexual health and intimacy, 35% of respondents said they were not at all satisfied with their sex life. Additionally, another 17% and 23% of respondents said they were only “a little bit” or “somewhat” satisfied with their sex life, respectively. Some of the common issues reported that were related to intimate or romantic relationships included having a partner who was scared to hurt them, relationship stability issues due to a lack of sex or infertility, and avoidance of sex all together due to pain or bleeding. These issues were reported to further affect feelings of anxiety, isolation, or depression, providing a clear picture of the relationship between physical symptoms, social life impacts, and emotional distress as a result of endometriosis.
Overall, quality of life impacts can be caused by many issues at once, which may even feed into and worsen one another. From these responses, it’s clear to see that endometriosis can impact nearly every aspect of life, beyond the physical symptoms of the condition.
*Does this article resonate with you at all? We would love to hear your experiences, thoughts, and stories in the comment section below!*
Verket NJ, Uhlig T, et al. Health-related quality of life in women with endometriosis, compared with the general population and women with rheumatoid arthritis. AOGS. Nov 2018; 97(11), 1339-48.