An Open Letter to Endometriosis: The Questions I Wish I Had Answers To

As many of you know, March is Endo Awareness Month. Apparently, this has been a trend since 1993! That means for 27 years, the #endowarrior community has attempted to better educate the world and fight for better medical solutions. And although we might have made some advances over these years, we still have a long way to go until we can find better treatment options.

So how fitting is it, that during Endo Awareness month, I would hear a new chronic illness that I might have along with all of my issues? Over the past month, I have been undergoing tests to determine if I have an autoimmune deficiency. And as of the latest bloodwork, it is likely that I do. 

At first, I made no correlation between my sinus and ear issues to my endo and adeno issues. In fact, it never even crossed my mind. Yet, like most of my symptoms, when you search “endometriosis and autoimmune” you would be amazed by all of the articles and blogs that come up. Some of these articles discuss the idea that endo should be evaluated to be an autoimmune disease. Others discuss the idea that the toll of endo on our bodies can lead to autoimmune deficiencies overtime. So now, while I wait to see an immunologist, I’m left wondering if one, I have a deficiency, and two, if it’s all connected. 

What amazes me the most about endometriosis is how invisible it is. How can such a powerful and destructive disease be invisible to anyone who is not an #endowarrior? When I first saw this new doctor, he goes, “so based off of your new paperwork, you’re a relatively healthy person besides these sinus issues.” Now, I am not sure if he did not notice where I wrote in endo on the paperwork, or if he did not know what endo is. But by the end of our consult I made sure to explain to him how “healthy” I really am. 

But it’s not just doctors that can’t fully understand my suffering. Through the my ten-year battle, I have yet to find anyone who understands me the way other #endowarriors do. Sure, I have supportive friends and family, who always try to listen and be there for me. But even then, when they’re trying to be supportive, they can unintentionally make me feel worse. For instance, my mother’s normal response when I complain about my symptoms is, “Take some advil and do something. Why don’t you go to the gym and exercise.” I know what she means is that she thinks I would benefit from a distraction. But usually in the moment, all I hear is “yea, umm, why don’t you exercise, maybe losing more weight will help.” (And for those of you who don’t know, losing weight is such a stereotype for endo. In high school, I was a size 18/20 dress. Now, I’m a size 8/10 and I still suffer the same brutal way.)

I guess my last question to endometriosis is why me? Why any of the chosen #endowarriors? Why were we selected? I don’t know if it’s because of genetics, since my mother and grandmothers have never experienced this level of issues. So if that’s not the case, why was I the first generation to experience this level of pain and suffering? Why do I have to be the one to have endo, adeno, chronic migraines, dairy and gluten intolerances, and now possibly an autoimmune deficiency?!

I am curious, has anyone else been diagnosed with an autoimmune disease/deficiency? What questions would you ask your endometriosis if you could?