A woman is shown in three different painful positions, each of which she is grasping at her abdomen, wincing.

The Realities of Life with Endometriosis: Results from the 2019 Endometriosis In America Survey

Endometriosis is not “just bad periods”, it’s so much more. A condition that impacts 1 in 10 women, endometriosis can cause frequent and debilitating symptoms, often impacting daily life. To learn more about the realities of endometriosis, we conducted a survey to understand symptoms, treatment experiences, and coping. More than 1,000 women shared their story of life with endometriosis.

The truth about endo pain & flares

For women with endometriosis, symptoms can be difficult to manage, and intense. In fact, most women experience moderate or high pain for over 2/3 of any given month. For 41%, endo symptoms (such as pelvic pain, bloating, pelvic pain, and back pain) occur every day.

Women with endo may also experience “endo flares”, or times when symptoms suddenly worsen.

Endo flares feel like: insides exploding, being a punching bag, barbed wire around ovaries, pelvis on fire.

Treatments don't always work

While endo symptoms can be frequent and severe, sadly, few feel like their symptoms are under control. In fact, only 9% feel that their symptoms are controlled on their current treatment plan. Although many doctors prescribe hormone therapies, few patients have found these treatments to be effective.

17% believe that hormone therapy has worked well for endo symptoms. 1 in 4 have tried 7 or more hormone therapies.

Fatigue and infertility take a toll

For many, two of the most frustrating complications of endometriosis are fatigue and infertility. 95% of women have experienced endometriosis-related fatigue. While infertility is less common, it can be devastating. As one community member shared, “Endometriosis robbed me of my fertility”. When asked which endo symptoms were the most difficult to manage, fatigue and infertility were most common.

21% have had a surgery/procedure for fertility issues. 45% have had 3 or more fertility procedures.

Relationships can be strained

The challenges of endometriosis can also extend to relationships and family life. For many, endometriosis has put a strain on romantic relationships, as well as intimacy. 81% have experienced pain with sex, and 62% believe that endo pain affects their family life.

Due to endo, 6 in 10 have felt unattractive, experienced loss of libido, or felt like a disappointment to sexual partner.

Some doctors just don’t understand

When asked about the impacts of endometriosis, 39% shared that have never experienced a time without symptoms. While the challenges of endometriosis are all too real, unfortunately, many doctors just don’t get it. Many women shared that their doctors do not understand their pain or appreciate their symptoms. Similarly, less than 50% say that their doctor regularly discusses their quality of life when talking about their current treatment plan.

Doctors: Just throw pills at you, need to believe patients about pain, and know less than their patients.

We CAN fight back

There’s no doubt that managing endometriosis can seem challenging, or even impossible. However, as we learned from this survey, women with endometriosis are STRONG. Many are fighting to spread awareness, while others share their successes (and failures!) to help those affected by this condition. Many are even standing up to ill-informed doctors, and calling for better treatment options.

If you are 1 in 10 women dealing with endometriosis, you are not alone. The endometriosis community, and all those who took this survey, know what you’re going through, and can help you to decide what’s next. Visit our community for resources, and support.

The Endometriosis In America 2019 survey was conducted online from March through June of 2019. Of the 1,207 people who completed the survey, 76% were people who have been diagnosed with endometriosis and 12% were in the process of being diagnosed.

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