Patient and Researcher: A Personal Story

“I realized there was something “off” with my body.”

Four years later, after multiple trips to the ER, many days bedridden, and too much time in pain, I still had no diagnosis. Nothing was showing up on ultrasounds, exams, blood tests, or anything. There was “nothing physically wrong with me,” they would say. Finally, one bright doctor told me my symptoms may possibly be due to something called “endometriosis.” There I was, eighteen years old, four years of pain passed, and I was hearing the word “endometriosis” for the first time. End- oh- mee- tree- oh- sis. Could it at least have a better name? My doctor recommended I see a specialist for diagnostic surgery, so I took her advice and scheduled an appointment and surgery with an endometriosis specialist in my area. During that surgery, my doctor diagnosed and “treated” my endometriosis, and this began my timeline of unsuccessful treatment after unsuccessful treatment.

“There I was, eighteen years old, four years of pain passed, and I was hearing the word “endometriosis” for the first time.”

My main symptoms are constant pain and fatigue. After my diagnostic surgery, I felt no difference in my pain — I was just beginning to get used to it. I took birth control pills, eliminated gluten and dairy from my diet, tried herbal medicine and acupuncture, but I was still needing prescription pain medicine to get through the day.

“I feel empowered and excited to contribute to citizen science and actively participate in researching endometriosis.”

After my first surgery, I founded Winning & Grinning , a positive empowerment group that strives to provide an encouraging and motivating space for women with endometriosis. We have fundraised and participated in a half marathon and a triathlon to raise money for the Endometriosis Foundation of America (EFA). I also worked as a health educator for the EFA, which is an incredible organization that raises awareness for endometriosis, educates high school students on symptoms and treatment options, and researches endometriosis to get closer to a cure. When I first heard of Citizen Endo, I was thrilled to find another way to get involved in the endometriosis community. Not only can I collect my own data through the Phendo app and gain insight into what makes me feel better, worse, and how my pain aligns with my cycle, but I am able to contribute toward researching my disease. Each day when I track my data on Phendo, I feel empowered and excited to contribute to citizen science and actively participate in researching endometriosis. I’ve also been able to help out with the Citizen Endo team as a patient and a researcher, through engagement on social media to increase tracking and data. Taking an active role in this fight minimizes just a little of the suffering I went through, and the suffering women like me go through every day. We are our own researchers and advocates, and the more we get involved and take charge, the closer we get to an endo-conscious, and endo-free world.

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Citizen Endo

Citizen Endo

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