My Endometriosis Journey: You Are NOT Alone
If you have endometriosis, this post is for you! You are not alone! In this blog post I’ll share all about my journey with endometriosis and how I’ve improved my mindset, quality of life, and overall well being.
Follow me for daily endo tips here on IG
What Is Endometriosis?
Endometriosis is not just painful periods. Endometriosis is a full body inflammatory disease with an immune component. The endometriosis lesions are similar to the tissue that lines the uterus, however, they are outside of the uterus. The lesions are hormone sensitive and respond to the hormones of the menstrual cycle, but, endometriosis is not caused by excess estrogen! Click here to read more about endometriosis
My Endometriosis Journey
I sat there, tears streaming down my face, in utter disbelief of what I was hearing.
"We've done every test there is and we can't find anything wrong with you. Are you sure you're in pain? Are you getting enough attention at home?" All of these thoughts went rushing through my head "Of course my pain is real! I don't make myself pass out! I can't even get out of bed sometimes. I have to pull my car over because of sudden pain I get. It hurts to go to the bathroom, sex hurts, everything hurts. What do you mean you can't find anything??? ... Oh no, what if it is in my head???"
I was 17. My parents were going through a divorce, of course it was easier to blame it on that and say I was making it up for attention. It took me 4 more years to get a diagnosis. 4 more years of unknown pain and suffering. 4 more years of doctors visits, being told I was making up my pain, being told I was drug seeking, being told it was normal for girls to have pain and to suck it up. I had a colonoscopy because they thought I had GI issues, they put me on multiple BC pills to regulate my periods, they did everything except suggest that maybe I had endometriosis.
My symptoms started when I was 15-16 when I was in high school with severe abdominal pain. My pain was never correlated to my periods. I would have all over abdomen pain that would almost make me pass out, it would come and go in waves and then I’d be fine. I wasn't officially diagnosed with stage IV endo until I was 21 years old.
After my first surgery I was told my bowel was adhered to my abdominal wall, I had blood filled cysts (endometriomas) on my ovaries, I had endo adhesions on my fallopian tubes causing them to be filled with fluid (hydrosalpinx); no wonder I was in immense, unforgiving pain. I underwent 2 ablation/coagulation laparoscopic surgeries for endometriosis between 2012-2014, neither of which even touched my pain.
I was angry. Why was my body failing me? Why did I get endometriosis? Why me? Why can’t I live a normal life? I was so furious with everyone and everything. I was mad at my body for being sick, I was mad at myself for getting endometriosis, I was nonchalantly upset with my friends because they were living a normal pain free life, I was mad at the doctors for taking five years to diagnose me, I was mad at the world. I couldn’t understand what I did to cause this.
Finally, one day, I realized that being mad wasn’t hurting anyone but me. Living in that place of anger was only making things worse for me. My thoughts were always negative, I was always feeling kind of upset at things, and it was really dragging me down to this low vibrational energy space that definitely wasn’t helping me heal. I had to come to the conclusion and realization that it wasn't anybody's fault. It wasn’t my bodies fault for getting sick, it wasn’t anything I did or anyone did that caused it, it really wasn’t anyone's fault. And this is when things really changed for me.
I realized that nobody was going to just hand me a cure for endometriosis (there still isn’t one today). If I wanted to start feeling better I had to show up for myself. I had to pull myself out of the trenches and really believe in the woman I wanted to be, not the woman who was negative and mad, but the woman who took care of herself and loved herself.
So I pulled myself out of this negative space and constant negative victim/blame mode and instead started to think what kind of woman do I want to become? What if things could be better for me? What if I could have less pain? What if I could have more good days than bad? What if I loved my body? What if I understood what was happening with my endometriosis? What if I could create more space for positivity and love in my life?
This idea of what if changed my life. Because what if I could really do it? Really what if?? So I started to search for at least one other woman with endometriosis who had found relief from her endo. And unfortunately in 2012, I couldn’t find much. So I decided then and there that I would become her.
And you may say I am a dreamer with my head in the clouds but I chased after that dream of what if and since then have created more space for positivity and love in my life, I have learned to love my body through endo, I have more days with less pain, and I have become partners with my illness. I have improved my mindset, quality of life, and overall well being, but I am not 100% pain free.
In spring of 2019 my pain began to return and I underwent excision surgery by a trained endometriosis specialist (Dr Garza in Austin, TX). Because my 2 previous surgeries were coagulation/ablation surgeries which essentially burn the entire top layer of your organs, I had so much scar tissue that was trapping/constricting my organs causing me so much pain that needed to be excised.
This is why it is so important to have excision surgery by a trained endometriosis specialist done from the very beginning. But that isn’t realistic for everyone, and I know it wasn’t even on my radar when I first got diagnosed. I was just so happy that a doctor was finally taking my pain seriously that I took what he was saying and the surgeries he was performing as god and thought he was performing the most up to date surgery. But he wasn’t, which is why my pain persisted after both surgeries and why I had to have a 3rd surgery in 2019.
Unfortunately my story is not that uncommon. There are an estimated 175 million women worldwide that have endometriosis and the reality is that number is probably a lot higher due to the lack of understanding from our medical community, the outdated information they are still teaching in medical school, and the delay in diagnosis of this disease. It takes an average of 10 years to get diagnosed with endometriosis! And the most common surgery that is still being performed by a normal gyn is ablation/coagulation which leads to more pain and scar tissue, prolonging pain and suffering for many women.
I still live by my what ifs today. And the one that I couldn’t get out of my head was what if I could become the woman I needed when I was first diagnosed? Thus Endo Babe Empowerment was born. I started this business with a mission to help ease the burden of endometriosis, to help women with endometriosis learn to live with + be partners with their disease, and help them learn how to love themselves through their diagnosis.
I want you to know that you are not alone! There are millions of us out here supporting each other, fighting for a diagnosis, fighting for better healthcare! United we are so much stronger! Do not hesitate to reach out, I will always be here for you <3
Chelsea Donahue | Endometriosis Coach
PS. Be sure to subscribe and follow my new podcast The Endo Babe Podcast on iTunes & Spotify! Also check us out @endobabepodcast on IG
If you enjoyed this post My Endo Journey: You Are NOT Alone, pin, retweet, and comment below please <3