Endometriosis has been referred to as “the most common disease you’ve never heard of.” While that is true for most of the population, some of us have had devastating journeys with this disease. As enraging as this topic is to me, I will try to steer away from angry rambling and stick to an engaging conversation that gets my point across.
http://https://www.youtube.com/watch?v=pLCeQyxVWB8
The Most Common Disease You’ve Never Heard Of – Shannon Cohn at The University of Mississippi
Endometriosis affects about one in ten women between 15 to 49 (or 176 million) worldwide. You would think that 6 million women in the United States having this disease would call for funding, research, and awareness, right? Well, that is not the case. Many women who suffer from endometriosis face insurance discrepancies and medical gaslighting. My own journey with endometriosis began when I was 12 years old.
I was in seventh grade when I got my first period. While this might be exciting for most young girls, I was in debilitating pain. Every month, I would spend three to seven days curled up in my bed with a heating pad and ibuprofen. Nobody could tell me what was wrong with me. Even though I was told, “You are just experiencing the joys of womanhood,” I knew my body and knew it was much deeper than cramps from my monthly cycle. After four years of searching for answers, I had undergone diagnostic and excision surgery at sixteen years old. I was finally gaining some closure from the days that I had lost to chronic pain – I have endometriosis.
I underestimated the peace that came with the diagnosis. The fact that my pain is valid and recognized is more than enough to ease the mental strain this disease has caused me. I have seen five doctors and been through two failed surgery attempts in the span of nine months. I was exhausted from all the hospital visits, all-nighters in the emergency room, and the mental agony of always being in pain. Frankly, I was excited for my surgery. After sitting in a waiting room for ten hours just to be told at nine o’clock at night that the surgery “just isn’t a priority,” one begins to question the validity of one not only as a patient, but as a human being. At this point, I had sunk into a depressing, self-loathing hole from what I saw no escape. I had to go through an extreme spiritual transformation by questioning my faith and morals to trust in humanity once again. There were too many times that I was disregarded, unheard, and swept under the rug. I was a young woman in pain who felt betrayed by her doctors and the system.
A Medical Diagram of Endometriosis by The Children’s Hospital – Colorado
This is when I found my purpose. I wanted to combat the medical desertion of women in America. Nobody should have to endure years of pain to be heard by physicians. There are so many women with comparable stories to my own, and I find that not just. I started to push for conversations about women’s health. I found my purpose in life is to advance our healthcare system and make it more accessible for women. Having that epiphany was integral to my recovery, both mentally and physically.
Harriet Beecher Stowe once said, “A woman’s health is her capital.” Retrospectively, I grasped how integral my health issues are to my past, present, and future. While my pain is slowly becoming a distant memory, the raw passion of my experience still fuels me to this day. It was more than pain, it was my growth, resilience, and compassion. As I endure the remainder of my journey on this Earth, this time in my life will fuel all the positive contributions I can make for women.
Please reach out to your local, state, and federal representatives to raise awareness about endometriosis funding and research. Most importantly, register to vote at vote.org and elect officials that place women’s reproductive healthcare on their agenda.
I think endometriosis is a great topic to put at the forefront of your posts. For me, I’m familiar wit the disease because my mom is a reproductive gynecologist at Hershey Medical Center and she treats endometriosis commonly. One suggestion to start: I would add a brief 1-2 sentence description of what endometriosis is (or add that under the caption of your image) for the people who aren’t familiar with the medical condition.
I’m really glad that you’re using your experience to advocate for women’s healthcare, especially with the recent Roe v. Wade decision. I think your story plays into the issue of “undiagnosed chronic pain,” in which people (especially women and minorities) are told that their pain is “all in their head.” This is a trend that should not exist, and it is a form of discrimination in healthcare that I’d encourage you to look into / maybe incorporate into one of your future posts. Overall, I like your post and how it incorporates your personal stories (ethos and pathos) and then delves into the deeper root problems of the system.
Thank you for having the courage to share your experiences with us.
As someone who has also experienced medical gaslighting, though not related to endometriosis, I empathize with the pain and frustration you went through and are probably still reeling from. The healthcare system is honestly disgusting when it comes to respecting people with uteruses. I also commend you for including a call-to-action at the end of your post – registering to vote and actually voting is one of the biggest steps we can all take to make this world better for all people!
I admire your courage in both dealing with and communicating about endometriosis, a diagnosis that undoubtedly brought just as much confusion as it did peace. Being a male with a gynecologist for a mom, I understand how taboo conversations on women’s health and rights (although I know less about those in general) can be. Thank you for being steadfast in your advocation for healthcare and unjust medical practice (like medical gaslighting). Like Adam, I hope that there are great steps towards more fair and beneficial experiences in the future for women, especially in a medical setting.
I like this blog post for many reasons. You do use the tips about punctuation from “How to Write with Flair” very well in this post, especially when you confirm your diagnosis of endometriosis. The use of that hyphen is so strong. I more importantly like how you were comfortable enough to share your story with others. My older sister suffers from Endometriosis, so I have seen firsthand how debilitating it truly is. Everything you described is how my sister’s experience with the disease has been so far. Luckily, she has found a doctor who is working to advocate for women’s rights and explore this issue instead of disregarding it. I like how you encouraged readers also to register to vote and vote for officials with reproductive healthcare goals for women on their agenda. Registering to vote is highly important because it allows for our voice to be heard by the people we elect. Thank you for sharing and urging people to do what is right when it comes to women’s reproductive rights.
This is an amazingly educational post, I really appreciate you sharing this with us. While I have heard of endometriosis before, I never really knew much about it. Additionally, I love that you bring in medical gaslighting; when I was trying to get my OCD diagnosis, so many people continuously told me that it was just my anxiety (almost like anxiety goes hand-in-hand with OCD) and that it was nothing to worry about. It took me years before a therapist finally listened to me and got me help. I think a lot of that heavily revolves around how so many people think neurodivergencies are only “male” traits; like ADHD, which also took me years to be diagnosed with, despite having every sign. Meanwhile, my male friend has been diagnosed for years. It can be so frustrating.