Well, it is here, Endometriosis Awareness month. I think for those of us who have Endometriosis, we are VERY AWARE of the disease that affects us on a daily basis. In fact, in case I was starting to forget, my body decided to remind me on February 28th when a cyst burst during one of my classes. Because of that particular incident, most of my students are now aware of the disease as well. Actually, anyone who knows me knows about Endometriosis. I make sure I talk about it to as many people as I can, not only to explain what is happening to me but what is happening to millions of women around the world.
My Mother and Aunts have Endometriosis. But I wasn’t aware of this until my diagnosis because they come from a generation where you didn’t talk about such things. I come from a generation where we talk about EVERYTHING. My generation is overly educated so we like to share and discuss all kinds of topics. I think my mother still struggles with the fact that I will call a boy. “Girls don’t call boys. Girls don’t ask boys out on dates. You wait for them to call and ask you out.” So what do I do? I call boys. I ask them out on dates. And I talk about life with Endometriosis. I’m a rebel!
Maybe that is why the Universe gave me stage 4 Endometriosis (also referred to as severe or invasive Endometriosis–some doctor’s don’t use the stage any longer). The Universe knew I would talk about it and write about it–maybe even write a play about it. I can see it now, “The Endo Monologues.”
It’s funny when I hear the stories from those who were recently diagnosed and they talk about their treatments. I always wind up in this “been there, done that” Twilight Zone episode. I have tried every treatment available to me, even a few I had to battle my insurance to cover (which they didn’t, hence a fairly large medical debt looming over my head). The thing about Endometriosis is that there is no cure and it affects every woman in a different way. One treatment may work for one woman but not for another. I did have surgery, followed by 8 months of Lupron treatments, followed by trying every birth control on the market.
Six and a half years of trying to treat Endometriosis, seeing specialists in Detroit, Reno, and Los Angeles, and I am still working on my “therapies” on a daily basis. The Endometriosis has created adhesions that are now affecting my muscles. But I don’t want to endure another surgery when I don’t have any large Endometria tumors. The more surgeries you have, the more likely you are to develop Endometrial cancer. So I am trying new therapies. I work with a Physical Therapist, a Deep Tissue Massage Therapist, a regular therapist to help me control my stress management, Meditation classes to help me learn how to relax, and a psychiatrist to help with my PMDD (Premenstrual Dysphoric Disorder–the clinical term for what I like to refer to as “Endo Fog”).
I have this entire team behind me, which includes my incredibly supportive friends, family, and students. Endometriosis is not something you can handle all on your own. Believe me, I tried. I tried to move all over the country, thinking I could run away from it but it followed me. It has helped me destroy some relationships in my life–and my therapists have helped me find ways to repair those relationships. Unfortunately, some could not be repaired no matter how hard I tried. That is the sad reality of the Endo war–there are always casualties.
I do live alone and I am the only singleton in a group of couples but I have learned that it only takes a phone call or a text to have someone there to help you. There are days when the pain is so bad that I can’t get out of bed. My California sister lives down the street and I gave her a key. I can text her and she will come over to bring me my pain meds and take care of my cats. And I have many friends who will come over and feed me if I don’t have the energy to go grocery shopping or to cook for myself. Even my neighbors will come and check on me.
But I do know, as a very strong Independent woman, that I have to learn it is OK to ask for help. I am often afraid to let people get too close because I never know how bad the Endo is going to be from one month to the next. I tend to push people away when the pain gets bad because I am afraid of the “Endo Fog.” But the great thing about my closest friends is that they don’t let me push them away. They show up on my doorstep. They bring me food and pick up my prescriptions for me. They know the real “me” and they can tell when the “Endo Fog” has taken over–they never hold it against me.
So to the other women out there who are struggling with Endo, just like me, I want you to know that you are not alone. There are times when this disease can push you into a deep depression where you feel like there is no one else in the world who understands what is going on with you. You start to think that they don’t believe you. They don’t think your pain is real. You look healthy on the outside but your body is being taken over by Endo and adhesions on the inside. You are not alone. There are people out there who understand. There are women out there, like myself, who are struggling just like you. And it is a daily struggle. But you have to do your best to survive the darkness. Don’t let this disease define you, only you can define you. And trust me, once you find yourself some supportive friends, hang onto them and don’t be afraid to lean on them, ask for help. Don’t deal with Endometriosis on your own. Like the old cliche’ goes, “it takes a village”–a village of support and you will survive.
Define Normal 