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.

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.

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.

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.

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.

How do I Stay in Touch with Citizen Endo?

You can visit our website citizenendo.org, send us an email at citizenendo@columbia.edu, follow @citizen_endo on twitter, or like our Facebook page.

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.

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