After years of experiencing unexplained pain and symptoms, I was diagnosed with Endometriosis in 2017. There were so many times I wanted to give up on finding answers, I had been through countless tests that came back “normal” and suffered through multiple health providers dismissing my pain. Something in me just couldn’t quit pushing for answers, so once I found an OBGYN who agreed that my symptoms were in line with Endometriosis I blindly followed her treatment plan for me. I did not do any research of my own because it sounded like this doctor knew what she was talking about. I didn’t even question her when she told me I would need a surgery every two years or so to “clean up the new lesions”. The thought of undergoing surgery for the rest my life before menopause sounded horrible, but I just thought it was the only choice I had. I agreed to do a diagnostic lap and believed cauterizing any endometriosis found would bring me relief for at least a couple of years, little did I know this would actually cause things to get much worse. I luckily declined to do the shots she recommended (Lupron), because I didn’t want to have the possible side effects of hot flashes/mood swings. I laugh thinking about that now, because I now know I wasn’t informed of any of the long term life altertering effects of Lupron. I just can’t image what I would be dealing with now if had decided to risk the mood swings and hot flashes.
After just a few weeks I started experiencing my endo symptoms again, and this time I had new symptoms; chest pain and shortness of breath. I was devastated and scared to death because I had no idea what was happening to me. I reached out to the gyno who did my surgery thinking she could help me and was met with harshness from her nurse who claimed that endometriosis did not cause shortness of breath. Desperate for relief, I scheduled an appointment with my long time primary care physician. I thought he’d want to help me figure out these new symptoms and while he did run tests to rule out blood clot, he proposed that my new symptoms were caused by “occupational stress”. I was desperate for real answers and quickly losing faith in the medical community, so I reached out to a friend of a friend who I knew had endometriosis.
Reaching out to a fellow endo warrior proved far more helpful than any other resource I had tried. She directed me to Nancy’s Nook on Facebook, and the rest is history. With all of the information I learned about endometriosis, I made an informed decision to do whatever it took to get to the Center for Endometriosis care in Atlanta. I decided to do the free records review and sent in all of my information. Within a few weeks, I got a phone call from Dr. Ken Sinervo. He reviewed my records with me and told me more about endo and how to properly treat it in 10 minutes than any other professional had told me in the last year. I knew I needed to get myself into his OR if I ever wanted to have my life back.
Just a few months after finding the CEC, I made my way into Dr. Sinervo’s OR at Northside hospital. Dr. S excised excessive amounts of pelvic endo as well as endo from my diaphragm (abdominally, no thoracic endo was found), abdominal wall, and sigmoid colon. I had rectovaginal endo excised as well. Recovery was a journey and I dealt with some pain from adhesions for several months until I decided to give pelvic physical therapy a try. Over 3 years later, I am living free of all of my old endometriosis symptoms. I do still have uterine pain, likely caused by adenomyosis (can’t officially know for sure into my uterus comes out), but my quality of life has significantly improved since my excision surgery and I have found treatments that help me manage the chronic pain I still live with. I am hoping to have a hysterectomy within the next year and cannot wait for my new life uterus free!
Remission from endo is possible. Healing from the years of trauma and medical neglect is possible. You just have to be willing to put in the work and fight like hell for yourself. This difficult journey can lead you to a beautiful and fulfilled life. Trust yourself and trust the process.