I squirm as I sit in my bed, halfway sitting and halfway laying down, resting against a small pile of pillows. If only I could find a way to sit or lay without as much pain. I could sleep, I mean I should sleep, but sleep seems to run the opposite direction when the pain comes. I could take a couple of pain pills, the pills are within an arm’s reach, but I know from previous experience that the pain can become worse. I don’t take the pills so my body won’t build a resistance to them, that way, when the pain becomes unbearable, the pills can help me live a semi-normal life.
I have put off writing about this for a while now. I’m not exactly sure where to start. However, right now, at this very moment, when I want to cry and scream because I don’t understand the fairness of life, right now seems like the perfect moment to tell you what life with Endometriosis is like. I will warn you now that I am going to give a glimpse of the pains and struggles Endometriosis can cause, this will include talking about bodily functions. If the thought of that makes you queasy, please, go read another post on my blog instead.
When I was eleven years old my family doctor’s nurse practitioner started me on birth control pills due to a very irregular cycle; we had seen her multiple times and after three months of my body getting rid of uterine lining, she thought I had “gone through enough”. Life became relatively normal, minus the times mom or dad would have to bring me my medicine at school because I had forgotten to take it. I remember sneaking it into my purse and going to the bathroom; I didn’t want anyone to assume anything about me because I had to be on birth control pills. I had no idea that this was just the beginning.
Several years later, my dad walked into the living room early in the morning, where I was curled up in my mom’s lap crying in pain, and stated that we were going to the emergency room. I don’t remember how long I had been having pain up to that point. All I know is that I had skipped school too many times because I couldn’t get out of bed without the pain shooting me down internally, I had given up multiple meals to the toilet without a known cause, and I would become noticeably pale and light-headed on occasion. I honestly thought I was going to die. The night that we went to the E.R. for the first time, I couldn’t button my skirt because my stomach was bloated. After some examination and an ultrasound, the kind E.R. doctor told me I had a cyst on one of my ovaries that had burst. A little while later, if I remember right, a month or two of time had passed, I went back into the E.R. for the same issue. This time, after figuring out what happened the doctor looked at me and asked: “What do you want me to do?” I had no response for him, because at the time, I was hurting, scared, and annoyed. Please understand, I know some wonderful doctors. However, I have had many experiences where doctors didn’t do their job with their highest level of expertise. I was afraid if I said anything in response it would come out as sarcastic and disrespectful, so I kept my mouth shut.
Eventually, I was recommended to a gynecologist. While he definitely crossed some professional boundaries, he did fix one of the issues I had been fighting with. The week before my homecoming one year, I had surgery. After the surgery, he told my mom that he was surprised my response to the pain had been just crying. One of my fallopian tubes had decided to dance around and twist itself up. They still don’t know if the twisting was caused by a cyst or if it caused the cysts. I felt terrible, I had to skip homecoming and one of my best guy friends and I had planned on going together. However, the result in my health was nice for the time being.
I eventually switched to a better gynecologist. Because of the unprofessional actions of the previous doctor, I was terrified of gynecologist visits. Thankfully I hadn’t really had any more big issues. December 30, 2013 changed that lovely pattern of health. That night I woke up, giving the contents of my stomach to a trash can and then the toilet. Come February, my body had produced enough uterine lining to cause a 2 ½ weeks process of saying good-bye. I went back to my new gynecologist and he told me it sounded like Endometriosis. When I got home, Google did a good share of work for me finding out what exactly the “long e word I couldn’t pronounce” was. The last 8 ½ – 9 years of a randomly bloating stomach, extremely painful cramps, being sensitive to certain foods, and of course the random E.R. visits came flooding back to my memory. This all made perfect sense. I have to tell you it was a slight relief. I wasn’t crazy, I wasn’t making any of this stuff up. It was real.
I spent my spring break that year in recovery from a laparoscopy; the only way to diagnose Endometriosis is through surgery. A few weeks later, my doctor confirmed I had Endometriosis. Can I be open here? Living life with Endometriosis really stinks! It’s been a little over a year since I was diagnosed and I’m still looking for a therapy that works for me. There is no cure. Technically having a hysterectomy can cure it. However, not only can that cause problems within itself, if the doctor doesn’t remove all of the Endo in your body, it can still reproduce and cause you the same problems as before. For those of you who don’t know, Endo causes problems because it attaches onto organs in the body and acts like glue. It causes problems with the organ’s function and major pain. Like I said before, life with Endometriosis really stinks sometimes. There are times when I have to cancel plans with friends because I’m in too much pain or because I’m too tired due to the Endometriosis lowering the efficiency of my immune system. There have been times I have had to skip class because I’m in bed, dealing with too much pain to even think about moving. The best part about those skip days is that I don’t have a doctor’s note saying it is excused. When you have Endometriosis, as with many other diseases, you get tired of seeing doctors that look at you with sympathy because they can’t do anything. I know that in the bigger picture, God has this great plan that will bring Him glory. It is going to be worth every tear I shed and every ounce of pain I have endured. However, on days like today, I want to tell Endo to go suck a lemon and step on a Lego.
A side note or two:
One in ten women have Endometriosis… And we still cannot find a cure.
March is Endometriosis Awareness Month and Yellow is our color.