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Thriving with Pain: My Endometriosis Story

I was fifteen, rounding my sixteenth birthday when I began searching for answers. I saw half-a-dozen dumbfounded doctors over the course of eight months or so, to cure an ever-growing, searing pain in my abdomen. By the time I had seen my third doctor, taken test after test, and peed in half a dozen cups, I began to lose hope, and honestly felt like I was going insane. I even felt like my body wasn’t mine anymore. No one could figure out what was wrong with me, and I often felt dismissed despite my very real pain. I felt like my doctors didn’t have the time to listen to me or search for answers. So, I hit the internet –which is never a good idea when looking for a diagnosis. For some time, I had felt a piercing pain over my left ovary, and learned I had experienced most of the common symptoms of ovarian cancer. I was convinced: my diagnosis could (possibly) be terminal. Luckily, my mother and my doctors were not, so we kept searching. Many of them tried to tell me what was “normal” for a girl my age, especially when it came to my menstrual cycles and hormones. I had always had heavy, long, extremely painful periods, but that was normal for me. I have always been very in tune with my body, so I knew when something was wrong or different. As it turns out, my periods, while normal and regular to me, were abnormal in nature and contributed to my diagnosis –but no one ever told me that, until I found the right doctor.

Eventually, I turned to an OBGYN for help, this particular OB specializes in endometriosis. He (yes he) was kind, understanding and ready to answer all of my questions such as:

  1. What is endometriosis? Endometriosis, or “Endo,” is a common, painful disorder experienced by 1 in 10 women. It occurs when the endometrium (the tissue that lines the inside of a woman’s uterus) grows outside of the uterus. Because of the nature of the tissue, it flexes and constricts like it does to produce menstrual cramps, but the pain is not limited to periods. It can lead to infertility and ovarian cancer.
  2. If the endometrium tissue is not where it belongs, then where is it? Endo can be found in the ovaries, fallopian tubes, pelvic wall, the outer surface of the uterus, and elsewhere.
  3. What are the symptoms? Common symptoms include abnormal bleeding or spotting, abnormally painful periods, infertility, discomfort in the pelvic region, painful intercourse, and digestive problems. Each case is unique.
  4. How do you diagnose it? Sometimes endo can be diagnosed via a pelvic exam or seen on an ultrasound or an MRI, but it depends on your symptoms. The only way to know for sure is to perform laparoscopic surgery and biopsy the tissue.
  5. How do we treat it? The most common and least invasive way to treat endo is via hormonal birth control. This could mean the pill, taking the pill continuously to prevent a period, the shot, or an IUD if you are not trying to get pregnant. Unfortunately, these methods are unlikely to cure the condition. Surgery is the more concrete form of treatment. Surgery also helps with fertility issues correlated with endo.

To learn more, see your doctor or visit the Mayo Clinic or Office of Women’s Health websites.

Fortunately for me, my OB recognized the “No uterus –no opinion,” nature of our doctor-patient relationship. We respected one another, and I knew he knew more about my condition than I did, but he also knew that I knew more about my body than he ever could. One of the biggest struggles I had throughout this experience was feeling like I was just another patient to that handful of doctors I had seen before him. To them, I didn’t know anything (especially after having done my own search for answers). My story, my pain didn’t matter. That all changed when I found my OB. My advice there is hold out for someone who respects and listens to you. You matter. Your health matters. You should trust your doctor believes that too. And that is part of why I opted for surgery.

That first surgery was the scariest thing I have ever faced. In part because of my recent obsession with Grey’s Anatomy where patients frequently wake up on the operation table, and partly because I do not respond well to anaesthesia or any kind of numbing agent. I was convinced not only that he would find ovarian cancer, but also that I would wake up and see my insides displayed before me. Neither happened, of course, but I have never been so scared in my life. There were complications, however. What was supposed to be a one to two-hour routine surgery turned into four and a half hours, and 90 percent of my pelvic wall burned away. My case was the worst my surgeon had ever seen in someone so young. I had just turned sixteen. Luckily, the diseased tissue had only afflicted my pelvic lining. My reproductive organs, along with all others, were safe.

My recovery was a nightmare, and not just for me but for my mom as well. I am a terror when I am in pain (sorry, Mom. I love you) and boy, was I in pain. I couldn’t even stand up off the couch by myself. I walked around with a walker like an old lady for about a week. And forget trying to walk up stairs! Sleeping was impossible, because I love to sleep on my stomach –not that I could sleep much anyway because of the pain I was in –and my poor mother didn’t sleep either because she checked on me throughout the night bringing me icepacks and all the painkillers I could take. My recovery was one of the most humbling experiences of my life, because I was so moved by the support I received from my friends and family members, especially those who came to visit me.

Eventually, I got stronger, and I continue to grow from it every day. I still struggle, though, and I face setbacks still to this day. I have undergone a second surgery to clear away the remaining diseased tissue, but I still endure a lot of pain. There are days I can hardly move, paralyzed by the pain, but I drink a coffee, take some painkillers, do some yoga and meditations, remind myself how awesome I am and how many times I have beaten it before, and continue chasing my dreams. I am not saying it is easy. Pain never is, whether it be emotional, physical, or somewhere in between, but the best things in life, especially the ones that make us stronger, are worth the struggle. Having endometriosis has been one of the most rewarding experiences for me despite it all. It has taught me to love and trust my body. It has taught me to face the setbacks with as much grace as I can muster (which some days is not very much, but I celebrate every ounce), and to achieve my goals. Endometriosis taught me how to win and grow my mind, body, and spirit. I choose to turn my diagnosis into a blessing every day.

Despite this, I would never wish this pain on anyone. We go through enough as women, but one of my greatest joy about sharing my story is spreading awareness about the disease so other women may find relief and the hope that I will help someone else through their diagnosis and treatment. When I began my journey, I had no idea how common endo is, and it is probably even more common than we know because many cases go unreported. Women are often told to suck it up and enjoy the pain; it is just part of the female experience, but it doesn’t have to be your experience. Listen to your body. Shuffle through a hundred doctors and specialists until you find the right one. Take your life back, because this life is not the female experience –it is yours. What do you want to make of it?

Photo 1, 2, 3, 4

Kayla Lee

Utah '22

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