Please meet Cate. We met Cate as she was exploring novel research into endometriosis. At the time, she was struggling to get an accurate diagnosis herself. Endometriosis was historically thought to affect women later in their reproductive years. More recently, we have a better understanding of how early the disease can afflict our bodies and how young people can manifest signs of the condition as early as onset of menstruation. We all have a responsibility to listen and learn from the lived experience of the youngest members of our society. Here is hers.
Meet Cate.
Navigating endometriosis as a teenager.
I was 15 years old when I first experienced debilitating pain in my lower abdomen, but it wasn’t until my junior year of high school that I heard the word that would sum up all of my pain: endometriosis. When I went to the doctor for excessive and frequent hiccups as a freshman, I had no idea that I was embarking on a two year diagnostic journey. I saw my pediatrician first. From there I was referred to a pediatric gastroenterologist, a pediatric surgeon, an endocrinologist, a bladder surgeon, a geneticist and the list goes on. I had every kind of test you can imagine – looking for diseases ranging from cystic fibrosis to ehlers-danlos, a disease affecting your connective tissue that complicates an endometriosis diagnosis. Yet still, we had no answers.
Despite all of this, I was fortunate. I had the resources to see specialists all over the country, yet none of them correctly diagnosed me or found a successful treatment for the pain I was experiencing. I cannot imagine going through this medical journey without access to these medical resources, something many patients in my position face regularly. The first time a doctor mentioned endometriosis it wasn’t in the form of a diagnosis but rather an anecdotal touch point, as her daughter was recently diagnosed with the disease. Other doctors dismissed the idea. But the more my mom and I researched, the more endometriosis made sense.
Towards the end of my sophomore year of high school, the pain became more severe, and I was put on birth control to manage my symptoms. I spent my summer in bed, nervous to return to school with the new reality that pain would control my life. Heading into my junior year I was faced with a choice no teenager should have to consider: was it more important to prioritize my health or my academics? It seemed impossible to focus on both.
Dealing with school.
Having surgery to confirm my diagnosis had serious consequences. I would have to miss a month of school which meant adopting a pass/fail designation for my coursework. That unfortunately meant I would not be obtaining important GPA metrics that I would need to stay competitive for college applications. Going to class everyday became challenging. I realized, first-hand, the concept of “presenteeism” – even when I was physically present in class, I was often unable to focus due to the pain. If I tried to take medication to address the pain, I became incredibly drowsy and unable to focus. During such an important time for my college applications, this choice between prioritizing my health or academics felt especially unfair.
Small grievances began to add up. Period products were not available in school bathrooms until my junior year. Teachers would deny my request to use the bathroom during class. Athletic participation was a strictly enforced requirement. No one I spoke with was familiar with endometriosis or the associated symptoms of heavy bleeding and incredible pain. I had to educate, explain, and in extreme cases, justify basic requests. “Here” is why I need to excuse myself to the bathroom more than once during a class. “Here” is why I cannot play soccer today. Even with the appropriate doctor’s notes, more explanation was required. The tragedy of having endometriosis as a young person is compounded by the assumption people make that you are trying to get out of class when you are just trying to survive a menstrual crisis.
Finding community.
As we scoured the internet and read everything we could about endometriosis, we found a lot of conflicting information. So we started reaching out to friends of friends who had been diagnosed with the disease. Nearly everyone we spoke to referred us to online groups, specialized subreddits and community-initiated forums as the ultimate resource for reliable information on symptoms, research and treatment options. What was the difference between ablation and excision? Would I have to get a hysterectomy? Why are drugs that induce menopause so often prescribed to manage the disease? What surgeons should we trust to make an appropriate diagnosis?
I was disheartened by the dearth of information out there. However, the endometriosis community, and one impassioned nurse in particular, came together to provide as many answers on the subject as possible. It became very clear through pouring over these first-hand accounts online and the many horror stories with the healthcare system that the most reliable information on navigating a painful disease like endometriosis came from patients themselves. This startling realization made one thing painfully clear: endometriosis was not getting the attention it deserved - from the public or the medical community.
A better future for children.
It was during this process that I first found NextGen Jane: a genomics research company looking to use menstrual blood to advance women’s health, and possibly diagnose endometriosis without surgery. The company’s clinical study was listed on the Endometriosis Foundation’s website, where I immediately signed up to participate. Compared to the two years of painful medical testing I had endured during high school, this clinical trial was simple and painless. If you have suspected endometriosis, confirmed endometriosis (surgically), or had surgery and didn’t have endometriosis, you are eligible to submit a tampon. Understanding and analyzing menstrual blood is crucial to understanding women’s health.
This past summer I traveled up to Oakland, California to visit NextGen Jane’s Lab, meet their team, and gain insight on their research process. I was able to watch the tampons undergo processing, sequencing, and run through bioinformatics pipelines in order to compare the differences in menstrual blood between women who have endometriosis and women who do not. Just six months earlier I had mailed off my own samples to the lab. I never could have imagined that I would be able to see this process from the other perspective. As a teenage girl, battling a disease that is so misunderstood, I often feel powerless. Seeing my sample in the freezer, alongside hundreds of samples from other women who were experiencing the same things that I was, made me feel hopeful for the future of women’s health and for my ability to continue being a part of this movement.