SHARING YOUR ENDO STORIES: Part 4 Caroline

“Hi, my name’s Caroline, I’m 19, and I have endometriosis. I remember my first period being very painful, but I’d been told that periods were generally uncomfortable. At 11 years old, I didn’t realize the difference between pain and discomfort. I went about my life for the next few years having cyclical pain, until my freshman year of high school when I was put on birth control. What followed was several years of changing birth controls, skipping periods, and being miserable. Something wasn’t quite right with my body, but when I suggested endo to the gynecologist, she brushed it off. I had several episodes of what I thought was appendicitis that landed me in the ER, but each time they found nothing, I grew a little more hopeless. Finally, during my senior year of high school, I went to the adolescent gynecology clinic at Boston Children’s Hospital and I had a laparoscopy with ablation that confirmed endometriosis. I thought that after that surgery, I’d finally experience relief. I didn’t. The pain was still there, the IUD they’d inserted was horrible, and I was beyond confused. At some point, the doctor prescribed Synarel, which is a nasal spray that essentially medically induced menopause for the duration of the treatment. I suffered through seven months of that with no relief. When I started college, the pain and other symptoms hit an all-time high, and I was desperate for something, ANYTHING that would ease my pain. I called my doctor and told him I felt like the endo was coming back, that I needed help. He told me it was impossible because he’d done the ablation and I was on Synarel. Probably I was just constipated and should go see a gastroenterologist. I was crushed. I felt ignored and disbelieved all over again. The next day, I randomly came across an article online that a girl with endo wrote, and she had the same exact story as me. I messaged her, asking what to do, and she pointed me in the direction of a Facebook group called Nancy’s Nook. I stayed up all night pouring through the posts and articles, tears streaming down my face as I was finally finally validated in my experience. I learned about the difference between ablation and excision, why Synarel is not a good treatment option, and why I was still having so much pain. To make a long story somewhat shorter, I found a new doctor, and I had an excision surgery on June 5th. I’m still recovering and I have a long road ahead, but for the first time in my life, I feel like the endo is finally out of my body. I feel like I have a second chance at life. Endo is a horrible, debilitating disease, but as Taylor says, endo is NOT the end. Thank you for reading :)” -Caroline 

Instagram: @spunkycaribou23

Thank you so much for sharing your story and helping your fellow Endo sisters, Caroline!!