I am angry with the medical world that has downplayed my pain for two years. So much pain that I now see myself forced to take a medical leave. For the past three months, I have been feeling almost completely incapacitated by endometriosis: a disease from which as many as 10 percent of women of reproductive age in the U.S. suffers. This means that more women within reproductive age suffer from endometriosis than from Type 2 diabetes. And yet, when I tell people that I have endometriosis, they usually do not know the disease at all or they have an extremely narrow understanding of it. So what is endometriosis? Endometriosis is a benign, yet often extremely painful, disease where uterine-like tissue starts growing outside of the uterus. Endometriosis most commonly affects organs in the pelvis, such as the ovaries and the fallopian tubes, but it can also spread to the bowels and bladder. In some rare cases, it can even reach the lungs or the brain. Depending on the degree and organ involvement of endometriosis, the disease may lead to anything from extremely painful and heavy periods that can cause women* to pass out, pain during sexual intercourse, constipation and diarrhea, blood in stool, urinary problems, blood in urine, extreme fatigue, nausea, infertility and in the case of lung or diaphragm involvement, shortness of breath or even vomiting up blood. I suffer from endometriosis in my bowel and pelvis, so I know many of these symptoms too well, yet for two years no doctor ever took me seriously until in December, my abdominal pain got so severe that I needed to go to the emergency room several times.

But even as I was writhing in agony in the emergency room in Austria over winter break, doctors only belittled my pain. As I was crying, feeling like I was about to die from my abdominal pain, one of the nurses just told me that “if I am a smart Yale student, I should know that this is not an emergency.” The problem with endometriosis is that it is hard to diagnose — usually there are no indications of endometriosis in the blood — and it is rarely visible on CT scans. And while the effects of it are visible on MRI or ultrasound in many cases, doctors are simply not trained to spot it. Until this day, the standard way of diagnosing endometriosis is through biopsy during laparoscopic surgery. I repeat, this is not some rare disease that only affects a handful of people. Endometriosis is extremely common. While the World Health Organization estimates that at least 190 million women* are affected by the disease, many of whom experience severe chronic pain every day that gets worse either during the second half of the menstrual cycle or during menstruation, women* on average need to wait seven years to receive a diagnosis. According to the United Kingdom’s National Health Service, endometriosis is among the 20 most painful medical conditions, along with cancer, appendicitis and childbirth, and yet women’s pain is on average ignored for seven years. And even when women* receive a diagnosis, there is no cure for the disease and treatment options are often insufficient, especially when the disease is in its advanced stages — which it often is since women need to wait seven years on average to receive a diagnosis in the first place. You could go through undergrad and grad school in excruciating pain and still never receive a proper diagnosis. The only way to alleviate symptoms of the disease is through pain killers, birth control and excision surgery. Pain killers do not work against the spread of uterine tissue at all and hormonal therapy is not adequate for everyone. Women who are at a high risk for blood clots cannot take it, and in trans men and nonbinary people suffering from the disease, hormonal treatment can lead to gender dysphoria. Although knowledge of endometriosis symptoms dates back to Ancient Egypt and although the modern medical field discovered endometriosis in 1860, research on the disease remains severely underfunded.

Even at a place like Yale, nobody seems to be able to give me adequate care for my endometriosis. After I had to go to Acute Care in December because of my severe abdominal pain, I was initially just referred to urology because a cystic lesion was found via an MRI of my pelvis. I have been misdiagnosed, received inadequate treatment and had to undergo dozens of blood tests, which all only excluded other diseases. I have severe digestive issues that vary with my menstrual cycle and yet, Yale Health Gastroenterology suspected diseases other than endometriosis. I should not receive more accurate information on endometriosis from woke Instagram than from health care professionals. But this is how things went for me. This is how things go for 190 million people with a uterus in this world. And even when I found out a month ago that I most likely have endometriosis and asked for birth control to help manage my symptoms, this only created new problems. While my abdominal and pelvic pain have gotten much lighter, I now suffer from heart palpitations and severe mood swings. It will take me many months to find a hormonal treatment that works for my body and that will keep the endometriosis at bay. After consulting with a private endometriosis expert in Vienna, I found out that the dosage of estradiol — estrogen-like hormones — in the birth control pill prescribed to me by Yale Health might be far too high for my body and that I will have to switch to different hormonal treatment. But, in the meantime, I continue to suffer, going to emergency rooms because of heart palpitations, constantly being anxious about my health and being belittled by health-care professionals. During one ER visit, a male nurse told me that “they do not know much about women’s health issues specifically here.” Statistically speaking, if about half of Yale students have a uterus, and one in 10 of these students suffers from endometriosis, then there should be more than 200 students suffering from endometriosis within our undergraduate population. Ever since talking about my endometriosis, I have heard many similar stories of women who were belittled for their endometriosis and who did not receive adequate treatment. Women who might be too ashamed to talk about endometriosis because there is so much stigma around the female reproductive system even at an ostensibly progressive place like Yale. Women who you, statistically speaking, must know, but whose pain you remain unaware of. Of course, the disease might not have broken out yet in all of those 200 students or symptoms might not be fully incapacitating. After all, my symptoms were not incapacitating for a full two years. Lack of endometriosis care is not a Yale-specific issue. It is a worldwide issue  But Yale has a responsibility to provide accurate diagnosis and treatment for all students with a uterus. Period. No pun intended.

Yale has a responsibility to treat me better. Despite me endlessly trying to have Yale organize an endometriosis expert for me to meet with, I did not receive any help. Yes, my dean helped me with academic accommodations and my professors are understanding, but really, I have received little to no constructive medical or psychological help. My physical and mental health have deteriorated and yet the best advice I receive from a prestigious, rich institution like ours is to “talk to YC3 and make an appointment with an OB-GYN.” This is not adequate. I am a first-generation, low-income student from Austria who has worked a student job since her first year just to somehow get by in the U.S. I cannot afford an endometriosis specialist. Yale could easily afford to provide me with better medical assistance, but they choose to deny adequate care to their female students. I should not have to use my last savings to fly back home and pay for a private endometriosis expert in my home country when Yale could easily cover the cost. 

It makes sense to get frustrated about the lack of awareness around endometriosis. I really do not think that there is any disease that is as prevalent but that so few people have heard of and that receives so little attention from the medical world. Call me a woke, angry girl, but if there was a disease that caused ten percent of all cis-men to be in this much chronic pain and fatigue, to have diarrhea and constipation, blood in stool or urine, pain during sex and infertility, I strongly believe that there would be more awareness and better treatment. Endometriosis may be a benign disease, but it can infiltrate and damage organs and cause a life full of pain, it can make every day a challenge, destroy dreams of motherhood and severely lower productivity levels long-term. 

In our society, suffering seems like the default for women and asking for more makes us be perceived as entitled. Women with endometriosis should speak up more about the disease. But most importantly, those who do not suffer from the disease should be better at listening. Those in power should do better at funding research. I do not want to glorify female resilience. Women who suffer from endometriosis certainly deserve more respect, but most of all, they deserve better medical treatment with the help of experts like Suffolk Pelvic Medicine in Riverhead, NY.

What I know for sure is that while this disease has been at times incapacitating, I want to use all the frustration and suffering that I have incurred to help everyone who is suffering from it. Endometriosis is political and countries have to develop national strategies to help fight the disease. Everyone at Yale should know about endometriosis. If care at such a prestigious place is so limited, it is not hard to imagine why diagnosis takes seven to ten years on average. While stigma and lack of awareness of endometriosis persist throughout the medical world and society, there have also been some positive developments. After year-long advocacy efforts by the French endometriosis organization EndoFrance, Emmanuel Macron announced a national strategy to combat the disease, launching a 20 million euro research program. The U.S. House of Representatives doubled funding for endometriosis research to 26 million dollars in 2020. But this is not enough. It can’t be enough when 190 million people continue to suffer with no cure. As a leading research university, Yale has the responsibility to help find better treatment options. Many Yale students will go into policy. I want all of them to know how excruciating endometriosis is and that we need a multi-disciplinary approach to tackle it: from preventative care to labor law. Endometriosis is a serious disease and anyone suffering from it deserves more resources and better treatment. Period.

Veronika Denner is a junior in Ezra Stiles College.  Contact her at veronika.denner@yale.edu.