By Kelly Jones
I feel broken inside sometimes. I’ve struggled with periods, sex, getting a handle on my emotions, and getting pregnant. It seems like these things come so easily to other women, and it makes me feel like I’m defective. Although I don’t consider myself lucky to have endometriosis, I do consider myself lucky to be diagnosed at 17. I’ve heard about doctors who think endo is something that can only affect women in their 30s but, in reality, many women suffer for decades undiagnosed. Once you are diagnosed and realize that endometriosis is the cause of your symptoms, a weight is lifted off your shoulders. Finally there are answers to all the questions you didn’t even know you had.
When I had my second endoscopy, I was completely terrified I was going to wake from surgery only to be told they had to perform a hysterectomy. Thankfully, that was not the case; another reason I consider myself lucky. Doctors did, however, find an “impressive” amount of endometrial tissue. It was all over my reproductive system except my uterus and ovaries. Unfortunately, I knew what it meant for me. Six months of Lupron shots. Six months of medical menopause at 24 years old. The Lupron shot is given once a month, hurts like hell, and suppresses your hormones. With ovarian suppression of estrogen endo can’t thrive and lesions shrink. Since my endometriosis was in such delicate areas, my doctor felt Lupron was a better option than his other recommendation, laser removal, which would cause painful scar tissue.
The first month of Lupron was overwhelming as my hormones completely took over. I cried, I was angry; I became a heightened version of my usual emotional self. I seemed to always be very happy or very sad, especially during the first month. Even though I knew endometriosis and its treatment affects hormones, it was still hard not to feel like something else was wrong with me. It was an out-of-body experience watching an emotionally exhausted person I no longer recognized. As my emotions started to consume me, it was difficult to remain logical. Then, after my second shot, things started to change. My hormones began to shut down like they do during menopause. It was as if someone flipped a switch; I felt like a new person. I felt happier, less irritable. I found myself calmer and more patient. The food cravings and migraines I had endured for so long went away. It was honestly the first time in my life I felt like myself completely. This hormone therapy allowed me to finally feel balanced.
My doctor told me I was an enigma, that I was glowing, and she could see the change in me. I wanted to stay on Lupron forever but I didn’t because I wanted to have children. The six months came and went and I returned to my more emotional self. Once again I began jumping from one birth control option to the next trying to find something to help me stabilize my emotions. It was harder this time. Things were different now. I had been removed from my own cave and shown the light- how could I be expected to return to the darkness? My experience with Lupron had opened my eyes. I wasn’t just crazy or overly emotional: it was my hormones that affected me and it wasn’t just in my head. I had learned to deal with the physical and emotional pain endo caused but nothing could prepare me for my toughest struggle: trying to have a baby.
Endometriosis and infertility can take its toll on a relationship. I have been lucky to have a strong man by my side for the past nine years who put up with each high, low, and everything in between. It’s impossible to not fear infertility when diagnosed with endometriosis. I thought since I had great doctors and was diagnosed early, I would have no problems getting pregnant. Unfortunately, my “luck” has run out and I’m still struggling to conceive.
As someone who has been a fan of the horror genre her whole life I’m beginning to find that scary movies don’t frighten me much anymore. I no longer fear monsters or ghosts, I fear real life. I fear never having children. I try not to cry every time I get my period, but I usually do. I try to be positive and relax and not think about it, like everyone tells me to do, but it stays on my mind every day. My endometriosis has tested me many times throughout the years. It has taught me strength. It has taught me pain. It has caused me frustration and heartache, but I decided that I would not let it defeat me. I realize that luck has nothing to do with it. It’s about your willingness to go on and stay strong. I am not broken. I will not let endometriosis make me think I’m emotionally crazy. I will not let endometriosis take away my right to be a mother. I remind myself I am stronger than this disease. I will not let what makes me a woman break me as a person.
*Patient stories submitted to Endofound.org are the views of the patients and not necessarily those of the foundation.