My Endometriosis Story
This has been a post I’ve been wanting to write for a few years now. I am always so open about my life on the internet, but this was a scary post for me. I am not totally sure why, but for some reason, talking about health issues is a bit uncomfortable. I feel as if I’m being judged for something I have no control over. I am at such a good place now, though, and I am hoping that my story might inspire someone or give hope to someone who is currently suffering with this horrid devil of a disorder.
I am not sure where to start this story, so let’s just start from the beginning.
For about four years or more, I have struggled with INSANE periods. If you have any signs of Endometriosis, you know what I mean by “insane”. It is debilitating. It was calling off once a month because I couldn’t walk. It was screaming in my bed stuck in the fetal position because the pain was so bad. It was praying to God that this pain wasn’t in-fact going to kill me. It was constantly crying because I was CONSTANTLY in pain. It was crying with sex because it hurt so bad. It was dreading to go to the bathroom because bowel movements felt like they were killing me. It was vomiting from pain. It was planning my schedule around when my period would come, because I was literally useless for 24+ hours.
After realizing this pain was in-fact NOT normal, and not EVERYONE dealt with such horrid periods, I decided to get help. I was so hopeful. I saw my first doctor and I was nothing but disappointed. I was constantly made to fee like this might be in my head, or I just “needed to get pregnant” to fix it all.
I doctor hopped. I doctor hopped a lot. Going from one to another just praying I would find someone. I couldn’t find someone who cared about me, what I was saying, and what I was saying I needed to be done. We were openly trying for a baby, so every doctor told me “let’s just get you pregnant”. Like it was such an easy task. Like we hadn’t been trying for YEARS to get pregnant with no luck. Like….because they magically said “let’s get you pregnant” it was going to happen overnight.
I was frustrated, but I knew I needed to be my biggest advocate. If no one else was going to fight for me, I was going to fight for me. And I was going to fight hard.
In August of 2016 we finally got pregnant. And in October of 2016, we lost our sweet baby. It was SO hard and it took a LONG time to understand God’s plan for us. But then I found my answer. I found the reason this might have all happened. And it came in the form of an ER Doctor on shift that Monday morning. After multiple people in the ER made me feel ridiculous for being in the emergency room for a miscarriage, after being there for hours, after bleeding more than I thought physically possible, my sweet doctor walked in. He sat down next to me, held my hand, looked me in the eye and said “I am SO sorry for your loss”. And I completely broke down crying. For the first time someone acknowledge that my life had been completely ripped away from he. He understood my heartbreak. And he sat there. For about two minutes he just sat there and he let me cry. And I will forever be grateful for that moment.
After I miscarried and I had my follow up with my then doctor, and he made sure to tell me “you don’t get special treatment next time you’re pregnant just because you miscarried”. And in that moment, I knew I would be switching doctors and I never wanted to give this many a second of my time ever again. I switched and it was hands down the best decision of my medical journey so far.
I had a fertility appointment with my new doctor and was explaining all my symptoms to him. He was concerned. He ordered an ultrasound and we found a cyst on my ovary that he wanted removed. He asked how we felt about moving forward with the surgery and “checking for endometriosis”. I was onboard 100%! (You can only check for endometriosis via surgery. No ultrasound or blood draw can confirm if endometriosis is present) For the first time someone was listening! Someone was caring and he LISTENED! We had a meeting on a Monday, Tuesday they called for surgery, and Wednesday I was in the operating room.
When I had my follow up for the surgery, he said he was SHOCKED to find what he did. Endometriosis everywhere on my insides. Covering my ovaries, uterus, up my sides, and surrounding my colon. He burned off as much as he could and was VERY pleased with the results. He told me “I can not believe you were living like this for so long. You have to have been MISERABLE”. And I was. I was so miserable.
Since having my diagnostic laparoscopy surgery, my life has significantly changed for the better. I am not in pain 100% of the time. My periods are NORMAL! My cramps don’t cripple me to the point of not being able to walk or talk. My life has so drastically gotten better, I honestly didn’t even know it could be this good! I keep saying “this is what normal people feel like!”
My biggest advice for ANYONE going through this, PLEASE be your biggest advocate. If you are having problems, TELL YOU DOCTOR. Demand someone to listen. I fully believe everyone should have a relationship with your doctor and you shouldn’t be “just another patient”.
I have had my life changed by endometriosis. If this is you too, and you need someone to talk to, please reach out! I am an open book about my story and I am hoping somewhere a long the way it can touch someone else in some way or another!