Patient and Researcher: A Personal Story

We thought it would be interesting and relatable to have an intern on the Citizen Endo team share her story — and why she decided to get involved in the endometriosis community. Hannah is in her senior year at New York University studying Applied Psychology and is pursuing a career in women’s health and psychology.

I remember it clearly — I was fourteen years old, and I had just started high school and gotten my period in the short span of just a few weeks. I was staying late after school, hanging out with friends, when I realized there was something “off” with my body. I started feeling this deep, sharp, and throbbing pain in my abdomen and nothing was helping. I was lying on the ground of the linoleum white classroom floor when I called my parents and told them I needed to go to the emergency room. “It must be appendicitis,” we all thought. If only.

“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.

Eventually, I went to another doctor who treated me, and treated me somewhat well, but we reached a point when my pain was no longer responding and we concluded it was time for a second surgery. Going into surgery, we (my family, friends, and I) were hoping to find a lot of endometriosis. I remember waiting for months until the moment I would wake up post-surgery and they would say, “it was everywhere,” so I could have some sort of confirmation and physical evidence that my pain and my suffering was real.

I waited and waited and when surgery came and went, my surgeon had found no endometriosis. I was shocked and disappointed, and truthfully dumbfounded. How could it be? After surgery my pain and symptoms got worse — worse than I had ever been. I couldn’t go to class anymore, I couldn’t go out, and I couldn’t focus on my work because of my intense pain. My doctor was convinced my pain and symptoms were all due to a nerve disorder, but I didn’t believe him. I know my body and I knew I had no other choice but to seek treatment elsewhere.

It’s not easy to find a “good” endometriosis “specialist,” which always strikes me as ridiculous considering the amount of women who need one. But, I had reached the point where finding the best surgeon was now the only option if I wanted to feel well. I spent hours online and on the phone speaking to doctor’s offices all over the U.S., sending my medical records and past surgery and pathology reports to doctors willing to do a free consultation. After days of research, I chose a specialist across the country. Luckily for me, but unfortunately unlike many other women suffering from endometriosis, I have family willing and able to travel with me and support my expenses.

When I landed in California three weeks later, my parents and I drove our rental car to where we would be staying, for, at that point, an undetermined amount of time pre and post surgery #3. At the office, I sat in a comfortable leather chair in my new doctor’s office, and I can still picture him moving around, pointing to a blown up diagram of my reproductive system, and explaining what I was feeling and why. He sat criss-cross-applesauce, right in front of me on the floor, gesticulating and explaining, but mostly listening.

I woke the next day, surgery over. My doctor told my parents, who later told me when I was able to comprehend all of the details, that he had found endometriosis everywhere. He said he was surprised that my last doctor could have possibly missed it — it was small — but it was everywhere. He found it on multiple organs and areas and all of the pathology confirmed endometriosis as well.

I am currently 4 months out from surgery and I have not had any endometriosis pain since. I have been recovering, and dealing with the aftermath of surgery on my body, as well as the aftermath of having pain for seven years, but I am thrilled and relieved to say that I have not had any endometriosis pain since my most recent surgery. When I reflect on my journey with endometriosis (still in fear that it will return any day), I remember every doctor, every test, and every failed treatment. I am angry and upset that it took so long for me to find a doctor who listened, understood, and could help me. I think of all of the years I spent in pain, and all of the women who are still in pain. I remind myself that strangely I was lucky to be in so much pain so young, so that I was able to preserve my fertility. I know that this isn’t over for one in ten women of reproductive age. I am frustrated that there is little to no governmental funding for research for my disease, and I am mad that women are unable to receive adequate care, treatment, or even acknowledgement due to the stigma and sensitivity within our society surrounding the female body. I know that there are people, both men and women, who minimize and doubt the pain of women every day. For this reason, I am compelled to involve myself in the endometriosis community. It is a community unlike any other — who wouldn’t want to be a part of this massive group of badass, strong, indestructible women fighting our nasty disease every 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.

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

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