Same Old Pain

Pain. It is a universal feeling, yet always so deeply personal. It is something we experience from very early childhood to the end of life. And although pain is hard, for most of us, it’s temporary. When I started experiencing abdominal pain during my first semester at Yale, I thought the pain — like all others — was going to be fleeting. 

I was wrong.

The pain started out of nowhere. One day, during my freshman fall in 2019, I woke up feeling like my organs were wrapped in barbed wire. There was a weird, intense muscle strain in my right, upper abdomen. I thought it was an injury or just a case of extreme bloating. When I brought my concerns to doctors, both at Yale and back home in Austria, I was told there was nothing wrong. But how could that be when my intestines, right rib cage, uterus, and bladder all felt like they were being punctured by thousands of little spikes? 

One morning, around 2 weeks after the pain started, I woke up in a pool of sweat. My head hurt and my shoulder felt dislocated.  There was blood violently pooling between my legs — more intensely than I had experienced during the seven years that I had been menstruating. This was not a normal period. And yet, when I returned to the doctor, I was told that everything was normal and that I should just follow up within the next few months. But the pain returned  during the second half of my menstrual cycle every month, magically disappearing on the third day of my period and coming back after ovulation. 

Then the COVID-19 pandemic hit. The world stood still but the pain never ceased.

Life with chronic pain is hard. Not having people believe you is harder. Days, weeks, months, and years passed by without any answers. Everyone told me I was okay: my friends joked that I was a hypochondriac, the grumpy doctor in Austria who performed an ultrasound on me assured me that “my pain would be gone with my next menstrual cycle,” my mom assumed my pain was just a product of academic stress at Yale.

I wanted to hold onto the idea of being fine. I put on a smile when I sat in class, when I walked through campus, when I ate lunch with friends. Underneath, I couldn’t help wondering: Did I just permanently tear a few muscles? Am I just extremely bloated? Am I crazy? Am I making this up? I asked myself all of this as I increasingly started to organize my life around my menstrual cycle. Since the world around me seemed to provide no answers to my pain, I found myself turning to the Internet. When I looked up my symptoms online, the Internet told me I might have endometriosis, a chronic disease characterized by the growth of tissue that resembles the lining of the uterus on organs outside of the uterus, causing cyclic and chronic pain, severe digestive and urinary issues, fatigue, pain during sexual intercourse, infertility, and a host of other symptoms. While my symptoms seem to match all those of endometriosis, when I went to the doctor’s office, I was told I was “crazy” and that everything was normal.

For years, I forced myself to believe so. I wanted to trust my doctors and, most importantly, I wanted everything to be okay despite the fact that, for two years, my symptoms never stalled. For two years, I planned my life around my menstrual cycle, doing as much school work as possible during the first half of my cycle, so that I had less to do during the two painful  weeks. Life was not easy and I did not have a source to attribute my pain to — apart from what the Internet had told me. Somehow I pushed through first year, sophomore year, and the first half of junior year, putting on a smile when I was in pain and believing the doctors who told me it was all in my head. Multiple times, while I was still at Yale, I had to call the ambulance because I thought I was dying. I knew something was wrong. But when I went to Yale Health, all my tests and scans came back normal. 

This charade fell apart on the last day of Thanksgiving Break in 2021. Suddenly, the pain intensified dramatically. It felt like someone was stabbing me between my ribs incessantly, tearing up my large intestine, wringing barbed wire around my uterus, and pushing it against my bladder all at once. Even with strong painkillers, the pain didn’t subside. For years, I had always persevered, somehow managing to cover up the pain with a cocktail of smiles and pain-meds.  The pain was so bad that I could barely get out of bed, walk, or eat between January and May 2022. By March, I could no longer keep up the façade and ended up taking medical leave.

Even after dozens of blood tests and ultrasounds, no doctor could give me an answer. When I raised my suspicion of endometriosis to doctors, almost none of them knew anything about the condition, with some doctors telling me that “they do not know anything about women’s diseases,” while others were utterly shocked by the fact that I had done my own research. Yale did not offer me any financial assistance with my disease or the chance to go to any provider outside of Yale Health, forcing me to return to Austria. A total of around a dozen doctors, both at Yale Health and back at home in Austria, told me that it was “all just in my head,”  that I was a “drama queen,” that I had a “low pain tolerance,”  that I was not mentally equipped to deal with the stress at Yale. One doctor told me that I was a “psychopath,” adding that “I speak too much for a woman.” Every Yale doctor that I saw either disbelieved or misdiagnosed me. Yale claims to help us out if we ask, but for me that was not the case. 

While I was no longer able to pretend that everything was perfect, I was determined that I would not succumb myself to the pain without a diagnosis. Immediately after I had returned to Austria in March 2022, I found a gynecologist in Vienna who believed my pain and had my first surgery with him in May 2022. Unfortunately, he missed endometriosis lesions on several organs during surgery and my symptoms only improved marginally. I felt defeated and frustrated that my pain was still debilitating most of the time. So I continued to reach out to different doctors. 

In September 2022, I flew to Romania for surgery with an excision expert, who found endometriosis in eight different organs: on both my ovaries, my ureters, my rectum, my vagina, my cervix, my utero-sacral ligaments, and my pouch of Douglas. While the surgery was quite extensive, it went smoothly and I was released from hospital after two days, allowing me to spend time with my best friend, who had accompanied me to Romania and whose family lives in Bucharest.

Since the surgery, my quality of life has dramatically increased, but, unfortunately, even this surgeon missed some of the endometriosis on my diaphragm, causing me to still have pain between my ribs. Ironically enough, I had become so well-versed in endometriosis that I was the one who spotted the lesion that he missed on the footage of my surgery. Contrary to most doctors, he admitted his mistakes after looking at the footage himself, but I did not have the time, money, or willpower to go through yet another surgery before my return to Yale in January 2023. 

Although I am now back at Yale and no longer in debilitating pain, my struggle with endometriosis is far from over. Endometriosis may not have taken my life, but it took most of the things that I deeply cherished: my studies at Yale, my hobbies, my relationship, and all my savings, among a host of other things. The medical system failed me. 

My story is not a tragic exception, but the norm. My pain was not in my head nor was it the result of evil spirits wreaking havoc. My pain was endometriosis. Endometriosis can be an absolutely debilitating disease that is as common among women of reproductive age as diabetes, but to this day most doctors have never learned about it. At this very moment, around 190 million people are affected by endometriosis. The disease affects one in ten women, causing debilitating pain in most, infertility in about 30 to 50 percent, and permanent organ damage in some cases. And yet diagnosis still takes an average of 7 to 10 years, mainly due to lack of funding for the condition and gender bias in medicine. 

For me, the hardest part about endometriosis was not just the pain, but the lack of people who believed me. As a patient, I was told that the pain was just part of being a woman and that I was hysterical, a liar, and an attention seeker. It’s time for the medical world to take the concerns of women and everyone else assigned female at birth seriously. It’s also time that we both believe ourselves and in ourselves. We are not crazy, we just have endo. And one day, hopefully, we can make the world believe us.