My summer didn’t exactly go as planned, but let’s face it: sometimes life just deals you a crappy hand and tells you to make the best of it. Unfortunately, that’s what happened this past June when I was on vacation and was diagnosed with a disease called endometriosis. I learned quickly that few people – doctors included – truly understood the condition and the effect that it has on the lives of so many women throughout the world, so I decided that I wanted to share my experience and to speak on behalf of all of my endo sisters in a way that I hope will provide guidance for those of you who know someone with endometriosis, or for those of you who may be suffering from the disease and don’t know it yet.
What is Endometriosis?
Endometriosis is a disease that isn’t very well understood by the majority of people in the medical field. Dr. David Redwine, one of the best endometriosis specialists in the world, describes endometriosis beautifully in layman’s terms as “tissue that somewhat resembles the inner lining of the uterus, but that is located outside of the uterus where it doesn’t belong.” While it is most commonly found in various regions of a woman’s reproductive anatomy, endo can even be found in and on the intestines and bladder and sometimes even the diaphragm. It’s also the leading cause of pelvic pain in women between the ages of 15 and 40, and one of the leading causes of infertility in women.
My Story
Don’t worry, I’ll be brief! My journey with endo started with a trip to the ER because of horrific pain I was feeling in my lower abdomen. No kidding, I thought my insides were going to explode. When the surgeon in California did my diagnostic surgery to confirm my endometriosis, I was told that he had fixed everything and that I would be fine as soon as I recovered from surgery. Two weeks later, I began experiencing gut-wrenching pain again. As it turned out, his method was unsuccessful, and my endometriosis had grown back – almost overnight. Since then, I have experienced symptoms including but not limited to the most common: extreme pain, mild pain, backache, killer cramps (all month), dyspareunia (painful sex) and fatigue. When my first surgery proved unsuccessful, I felt so lost and frustrated. I felt helpless, and lost hours of sleep at night wondering if I might have to endure this pain indefinitely and becoming increasingly fearful that my risk of infertility was going to become a reality. Aside from that, it was pretty interesting learning how to handle daily life. Personally, I found that I had two choices: I could explain my disease to everyone that asked so that they would understand why I wasn’t going out that night, why I didn’t show up to class the other day, or that the reason I wasn’t drinking was because I had given in and taken painkillers – or I could keep it a secret from the vast majority of people and go out and go to class with a smile and just quietly bear the pain and discomfort I’m in. For the most part, I go with the second one because it’s just annoying to constantly tell people, especially because “I have a diseased uterus” isn’t exactly the most comfortable thing to say (and I can imagine not very comfortable for others to hear, too)! As anyone else with an autoimmune disease might tell you, it’s pretty damn rough to go from being a totally normal person to suddenly being stricken with a chronic illness that changes your life.
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What We Want You To Know
Endometriosis affects each woman in a different way depending on its type, the amount, and the location. The crazy thing is that some women have endo and don’t even know it, while others are plagued by symptoms on a daily basis. It is such a poorly understood disease, and because of its invisible nature, it is difficult for friends and family to understand the true impact that it can have on those of us who have it. For this reason, I sought support through an online forum for women who have been diagnosed with endometriosis. Through Endo-Resolved, I found a world of support and understanding from women all over the world, most of whom are from the US and the UK. These truly beautiful women helped me through my most trying times earlier in the summer before I found a treatment plan that reduced my symptoms.
Because this condition is so hard to explain and talk about, I turned to them for advice. I wanted to know what they thought I should share with you. I asked them to describe endometriosis in one word, and this is what I got: Endometriosis is misunderstood, heartbreaking, often misdiagnosed, never-ending, and destructive (to both our bodies and our lives). Aside from that, I want you to know that the symptoms of endometriosis are not like the symptoms of a cold. You cannot see them. Dr. Cook, an endometriosis specialist from Los Gatos, CA wrote an article about the difficulties that women with endometriosis face. He wrote that “the dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.” This beautifully written article captures a nearly perfect understanding of the effect that the disease can have on our lives. As an addendum to my article, I seriously encourage you to read through his short piece so that you might grasp a better understanding of how it feels to walk in the shoes of a woman with endometriosis.
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What if you might have endometriosis?
If you believe that you might be suffering from endometriosis, I strongly encourage you to see a doctor. A forum member from Maryland named Jenaya said it best: “I want women to know that their pain is not normal and they shouldn’t just accept being cast off by doctors that don’t know or understand the disease. You deserve to have a better quality of life and having a period shouldn’t mean your life has to be put on hold. If one doctor doesn’t help you, then find one that will.” If you have endometriosis or believe that you may have endometriosis, one of the most important things is to be your own advocate. Before this summer, I had no idea how to advocate for myself. I let doctors push me around and treat me like I was an idiot until, after so much stress and so many tears, I finally couldn’t take it any more and learned to stick up for myself.
Another important thing to consider if you are suffering from “killer cramps,” is that killer cramps aren’t normal! If your cramps are so bad that you think you can’t carry on with your day, or if you’re taking a ridiculous amount of OTC meds that don’t even make them go away, there could be something wrong. As Danni from Australia put it, “the pain around periods, not around periods, and around sex is not ok and it is not something to be ashamed of. I grew up thinking that everyone goes through this,” – I thought that too, but it isn’t the case.
If you do have endometriosis, I can promise you that you’ll find a way to work around it. It took me a few months filled with a general atmosphere of crappiness, but eventually I figured out how to handle my symptoms and make the best of life for the time being. Granted, the fact that I know I’ll be seeing the most brilliant specialist in the whole wide world in one month certainly makes it easier to see the light at the end of the tunnel! Also, in the words of Dr. Cook, please be wary not to judge a book by its cover: “you would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.” Please try to remember this if you know anyone with endometriosis – or any autoimmune disease, for that matter. And welcome back, collegiettes™!
Sources:
http://www.vitalhealth.com/blog/endometriosis/what-it-really-means-to-ha…