I am 1 in 10, Are You? The Strength I’ve Gained from Endometriosis
By Angelica
“My strength did not come from lifting weights. My strength came from lifting myself up when I was knocked down.”
This quote could not be truer. I am 1 in 10 women who have endometriosis. Some women may not even know about the disease so before I share my story I will share a few quick facts about endometriosis (endo for short).
It’s an incurable disease
1 in 10 women suffer from the disease
It takes an average of 10 years for a woman to be diagnosed
It can only be diagnosed through surgery
Causes infertility, painful sex, bowel problems, chronic headaches or migraines and severe cramps during menstruation
Those are just a few of the quick things I tell women who don’t know much about endometriosis. A more in depth explanation of the disease is endometriosis is a condition that causes the uterine lining to develop outside of the uterus. This means each month you have your menstrual cycle the lining doesn’t shed and gets stuck on organs it shouldn’t, mostly the fallopian tubes and ovaries. Some women develop uterine lining on their other organs too. Endometriosis is a disease that shouldn’t be taken lightly but for some reason many gynecologists aren’t educating young women on the symptoms, so they can prevent being in crippling pain.
I was diagnosed with stage four endometriosis and a five-centimeter endometrioma two years ago. For years I would have periods that would cause me to miss work, get sick and lay in a fetal position for days on end. Finally, after a lot of encouraging from my boyfriend at the time (now husband) I went to my gynecologist and asked him why I had been hurting so bad. The cycle of going through the pain was just getting to a point where I needed to find answers. Two weeks after meeting my doctor I was laying in a hospital bed getting ready to have my first laparoscopy. I was so scared and didn’t know what the results would yield. I was told surgery would take two hours, but it ended up taking four. I had such severe endometriosis they couldn’t get all the built up lining out. I was also told my left ovary and tube couldn’t be located and I’d have to have another surgery. Two days after my surgery I began my period. I have never felt pain like I did from healing from a scope going through my belly button and robotics being used to get rid of the lining, add cramps (that were on steroids) and you get a cycle that seemed like I wasn’t going to get through.
Two weeks later I had my follow up appointment to make sure everything was healing properly. It was then that my doctor said I’d need another surgery because I’d continue being in pain. One week later I was again at the same hospital, in the same operating room getting ready for laparoscopy number two. Only this time the outcomes were much worse. While I was being operated it was discovered my left tube and ovary were non-functioning. Upon waking up I was in terrible pain and honestly couldn’t remember where I was. The nurse by my side said I would be moving to my room soon and could see my family when I was there. And let me tell you I thought I knew what pain was, but this surgery takes the cake. I had four large gauze pads taped to my stomach and it hurt to sit up. And when I say hurt, it hurt so bad I was in tears. The first person I saw was Russell (fiancé at the time, now husband) and he asked how I was feeling. (Then I threw up all over place and he still managed to think I was the prettiest girl in the world…how you ask? I have no idea).
I remember being in the room with him when the doctor came in bearing bad news. He said I no longer had a left side and I would have a 5% chance or less to conceive because the endo had spread to my colon. When they did this surgery my uterus and colon were fused together with scar tissue, which explained why I’ve had bowel trouble all these years. As I sat in the bed with Russell next to me I cried. I don’t know for how long but the tears rolling down my face were large crocodile like tears. I asked Russell if he still wanted to marry me, what we’d do if I couldn’t conceive and how would I get through this. He said, “no matter what happens we’re in this together”. Those have rung true ever since.
I had a twelve-week recovery ahead of me and it was brutal. My body looked morphed and my stomach didn’t look like mine. I went through a period of not wanting to look at myself in the mirror because I was ashamed, embarrassed, disappointed, and angry that this was happening to me. My dream was to get married and begin a family right away and that didn’t look like it was going to come to fruition.
But like Russell said no matter what we’d get through this together. I recovered from the second surgery and in August of that year had my third laparoscopy because the pain came back immediately, and the lining was building again. After this surgery I had my wedding to finish planning and I’d had enough of hospitals, recovery, and more pain.
I decided to take six months and put together a plan of next steps. Those six months came and went and in January 2017 I had my fourth surgery. I was used to the hospital and everything that came along with surgery, but I still felt this guilt. The guilt that I couldn’t conceive before this and I was extremely disappointed. Fast forward to now. We have a plan in place but I’m in pain most hours of the day. I am currently on Lupron-depo, a medication to help prevent a woman’s reproductive system from functioning; I don’t have periods and am in a forced menopause. It’s not any fun but at least I don’t have to worry about the stabbing pain and painful menstrual cycles. However, I am dealing with infertility and I can tell you I have never dealt with something so hard in my entire life. I am depressed and have anxiety because of the infertility. There are days when I don’t want to get out of bed. There are days I tell my husband I’m sorry I can’t conceive. There are days when I wonder when this will end. I don’t have all the answers and I can only offer a little bit of advice based on my experience. But if I were younger I would have asked more questions and been more persistent on finding answers to my pain.
I’ve also learned that I am strong. I am stronger than I thought I could be. This is a bump in the road along my way to becoming a mother. One day I know I’ll hold a little baby, have many sleepless nights, and love a little one that I have a love for that is indescribable. The point of telling you all of this is that no matter what you are going through, you are strong. You may have days, like myself, where you think you just can’t go any further but just know you can. I still have days when I wonder why I have endo and question my path in life. But then I remember we are all destined for greatness and sometimes the obstacles that challenge us the most are the challenges we end up being the most grateful for. One day I’ll be grateful for my challenge and until then I’ll take solace in knowing that I’m coming out of this stronger than I ever thought I could be.
