Pain and Quality of Life with Endometriosis

Recently, we asked about your experiences of endometriosis. We were struck by just how much endometriosis-related pain (and associated symptoms) limit your day-to-day activities. While pain is not a primary issue for every woman with endometriosis, it can have a huge impact on quality of life, particularly in regards to limiting work and social activities.

While severe pain is known as a stereotypical endometriosis symptom, how women experience this pain varies across several dimensions.

The exact location (lower right pelvis, back pain, stomach pain, etc.) and quality (dull, throbbing, piercing, etc.) of endometriosis pain is different for every woman. In addition, the triggers of endometriosis pain can vary. For example, some women may experience bowel related pain, painful urination, or pain after eating.

Endometriosis pain is also thought to vary in a cyclical pattern, since endometriosis patients can have pain that is linked to their hormonal cycle, although this relationship does not exist across all endometriosis sufferers. The reasons for these differences remain unclear to researchers and doctors.

The experience of period pain (dysmenorrhea) is not exclusive to women with endo, nor are the impacts of period pain on quality of life for sufferers.

In a recent survey of 1,000 women for BBC Radio, 52% of women had period pain. Of these women, nearly a third had taken at least a day’s sick leave as a result. Even though 50% had pain, only 27% had told their boss period pain was responsible, demonstrating how periods and period pain are often stigmatized.

Such stigmatization means many suffer in silence and do not get the support they need, causing women to feel unhappy, dissatisfied and be less productive workers.

The negative impacts of endometriosis on women’s work lives is supported by scientific research (aka “the literature”).

For example, each affected woman loses on average 10.8 hours of work weekly, mainly because of reduced effectiveness while working. The stress from lost productivity and the resulting tension with employers can have large negative psychological impacts.

Women express fear of symptom recurrence and are generally scared of dealing with endometriosis in the long-term, envisioning a bleak, uncertain future. Endometriosis also has real economic consequences — direct costs from endometriosis are estimated at approximately 7062 dollars per woman per year.

Endometriosis-related pain affects not only work activities but also social activities and personal relationships.

Many women report how endometriosis puts a strain on relationships with partners and in some instances even causes relationships to fail. Endometriosis is particularly difficult for women and their partners given that pain during sex, or dyspareunia, is common and adds to existing emotional stress. Relationships with friends and family can also become strained as a result of the disease, since endometriosis often forces women to cancel social events due to pain and fatigue.

Overall, endometriosis has a huge negative impact on women’s lives, representing a reduction in quality of life of 19% when compared with a person with the best possible health.

While we know the influence of endometriosis on a woman’s life can be huge, many questions about the disease remain. The root causes of endometriosis pain remain poorly understood, and further research is needed to understand how women with endo experience this pain.

There is also little known about how and if pain from endometriosis correlates with the menstrual cycle. More detailed evidence is needed to show how endo pain affects women’s ability to work and function on a daily basis — current data is mostly based on static questionnaires which survey women at a single point in time.

Mobile health apps (mHealth) provide us with a unique opportunity to study the possible connections between quality of life, pain, and menstruation.

When patients report their day-to-day experience of endo, we can start to see patterns emerge from the data both through time and across patients. The more patients participate, the more generalizable patterns we can learn. The more data each patient contributes through time, the more nuanced temporal patterns can be learned.

The success of our work depends on patients engaging in research and contributing data on the daily experience of their disease.

It’s important that patients be given an opportunity to contribute to a better understanding of endometriosis and its effect on quality of life — something that is particularly important given just how serious the disease can be for the estimated 10% of women with endometriosis.

Stay tuned for a new study from Citizen Endo on these three dimensions-pain, menstruation, and quality of life. For this study, we teamed up with Deborah Estrin and her lab at Cornell Tech.

How do I Stay in Touch with Citizen Endo?

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