This post will be the start of my endometriosis journey leading up to my first surgery. I was 16 and my periods were fricken awful. Ha, how is that for starting off! I mean it is normal to have your periods so debilitating that you just want to curl up in a ball on the couch, or that cause you to miss school, work and family functions because of the pain….right??? Obviously there’s heavy sarcasm in that statement. But at the time I honestly thought this was normal. So I was put on birth control at age 16 to help control the pain. No doctor even mentioned the word endometriosis to me. Now bear with me as I jump through a few defining moments of my early 20’s that lead up to my diagnosis of endometriosis.
When I was 19 my parents divorced. I was going into my sophomore year of college. Up until this time I had a pretty uneventful life, in a good way. I had not experienced lost loved ones, medical issues or heartache. So needless to say when my parents told me of their separation I was devastated, shocked actually. Up until this point my life was pretty “perfect”; so that year was the most difficult I had experienced thus far. It was that year my digestive system decided to “awaken”.
Now I had always dealt with painful periods but it was tolerable with the birth control. The digestive system issue is what came out of nowhere. I went to my first doctor for my digestive system at 20 years of age. Now there is a whole different journey with my diagnosis of Celiac but I’ll save that for another day. It was at this time though where the struggle to find a doctor who listened and understood my case truly began. And I promise this ties into the endometriosis, just let me ramble for a bit more.
Before I get into the next phase of my life let me first and foremost say I have the most outmost respect for Doctors and truly appreciate all they do for us. However, my experiences with a few of them left me frustrated and in prolonged pain. You see I spent a few years of my mid 20’s going from one doctor to another trying to get to the bottom of my digestive issues. They all had the same answer “IBS and medication”. Well my issues continued to get worse. Medications did not touch my symptoms and I knew that having to run to the bathroom 20 times a day was not normal. My intestines would cramp like no body’s business. So I finally was diagnosed with Celiac in 2009. It was through this experience that I learned I would have to become my own advocate for my health.
Ok now back to endometriosis. It was shortly after being diagnosed with Celiac that my husband at the time and I decided to try to have a baby. I will never forget my first period after going off birth control since 16. I felt like a truck collided with my lower abdomen. It was the worst period I ever experienced. It was debilitating and I even like to think I’m a tough cookie. And each month the periods intensified. I literally would be out of commission for 1-2 days each month during my period. It would feel as though knives were stabbing me in my entire midsection, my back pain was excruciating and I would spend those first couple of days curled up in a ball on the couch. At times the pain would be so bad I would vomit. And the bowel cramping….OMG. That was by far the worst….even after switching my diet to Gluten Free. But nothing would touch my pain.
I would hear of a friend’s pregnancy and struggle with the news. I would be so happy for them yet couldn’t understand why I wasn’t getting pregnant. Why was it so easy for them and not me? I questioned God, why was he preventing me from bearing a child? I started to tell myself that I was a defect; that there was something wrong with me. Here I couldn’t even give my husband at the time a child to call his own, or my parents a grandchild. It felt like endless months of grueling periods all with the letdown each month of a negative pregnancy test.
Finally after a year and a half of this, and no pregnancy, I went to an OB-GYN. She was awesome. She listened and sympathized with my pain and struggles to get pregnant. She told me though based off my symptoms I had a very slim chance of getting pregnant. She suspected I had endometriosis.
Endo-what!? This was the first time I had ever heard of endometriosis, I had no idea what it was. Heck I couldn’t even spell it!! Now you would think I would focus on the fact I had a slim chance of getting pregnant opposed to the endometriosis right? Not me. I ignored it and just focused on the facts of endo. I dived into researching as much as I could about it (thank you Google!). Yes to learn about it but more to prevent myself from thinking about the fact that I may never carry my own child. I marked another checkmark next to the “my body has failed me” list that I started years back. This is when the self-doubt, the lack of self-worthiness talk started in my head. I found it easier to focus on the logistics of endo rather than the emotional aspect or effects it had me. Ha I still do this today!
During my research of endometriosis I learned that it’s more common then I realized. When I read the symptoms I literally thought they were written based off me. In discussing my options with my Doctor I learned quickly there is only one way to know for certain if you have endo and only one option to remove it; A laparoscopic surgery. You can’t see endometriosis on an ultrasound, there’s no blood test for it…nothing. The only way to truly diagnosis it is the laparoscopic surgery which small cameras are then used to see inside. If endo is found then it’s removed at the same time.
So August 2012 I prepped for this. Well turned out I had stage 4 endometriosis, the worst stage. It was pretty much everywhere in my abdomen; intestines, bladder, appendix, colon. So it was removed via ablation (basically burning the top layer of it off). My tubes were 98% blocked so no wonder I wasn’t getting pregnant.
But I was fortunate enough to become pregnant with my first son 3 months after this surgery. He is my miracle baby :) Vander arrived July 11th and is the most perfect, easy going and loving little boy, and yes I’m biased as his mother.
Any new mom will tell you it’s beyond overwhelming having a newborn. I was so focused on being the best mom I could that I did not pay much attention to my symptoms returning shortly after giving birth. Subconsciously I knew the endometriosis was growing back, quickly, but I didn’t want to deal with it. I didn’t want to know what the future of my health looked like…would I be able to have another child? Would I need another surgery? Did I dare think of a hysterectomy? I found myself burring more and more of my feelings and concerns and in turn questioning God’s plan for me. I had officially gone into my “survival” mode.