The Impact of Endometriosis Surgery on My Mental Health

It’s been one year ago that I went into surgery with normal expectations. My doctor and I had talked thoroughly, and I was prepared for all scenarios mentioned, or so I thought. Two hours after my surgery had started, at 12:31 pm exactly, my heart went into cardiac arrest. I stopped breathing. Code blue was called, and a team of doctors and nurses fought to get my heart started again. It was eight long minutes before they got my heart started again. No one ever tells you how painful it is to wake up after eight minutes of CPR. I’m here to tell you, it hurts very badly; but I survived.

The next four hours of my life were the worst. They called code blues on and off as I struggled to fight to stay alive. The nurse by my side kept speaking to me, “Stay with me Kristi, keep breathing for me.” She would shake my body firmly, but gently, to help keep me awake and alive, because every time I drifted off to sleep, I stopped breathing and my heart rate dropped. I had no pain killers in my system and just had my organs removed and endometriosis excised from my abdomen walls and sacral joints. Not only did my chest and spine feel like I was crushed by a semi-truck, but the pain from surgery itself was excruciating. I had to fight to stay awake and feel all of it so my heart and lungs wouldn’t stop again.

As I drifted in and out of consciousness, I remember looking around and seeing all the frightened faces of the nurses. I could hear them talk to each other as they scrambled to figure out what to do, because apparently my situation had never happened before and they were terrified. I’m the one patient with rare complications that all doctors and nurses dread. I did warn my doctors before surgery, and thought they were prepared, but they had no idea it would get that bad. Even through it all, I was glad I had a whole team by my side who was quick to help me through the worst day of my life.

I spent the next several weeks struggling to even function. The CPR may have saved my life, but my sternum, spine and ribs were bruised. I literally had a palm sized bruise on my chest. I had bleeding under my sternum that formed a large hematoma. Breathing in was very painful; raising my arms was not possible. I couldn’t hold onto much of anything and dropped everything I tried to grasp. I had difficulty with word recall and slurred, garbled speech. I kept passing out from the metabolic acidosis that had developed from the raised hemidiaphragm. It may have been a struggle and long recovery, but I was alive, which is what matters.

I had difficulty sleeping for about a month, the post-traumatic stress disorder (PTSD) kept haunting me. I was terrified every time I tried to fall asleep, afraid I’d stop breathing again. Logically, I knew I was going to be OK and didn’t think it would be a big deal. But apparently my body didn’t believe me. I kept having nightmares of dying every night. The constant pain from CPR and surgery was fueling my nightmares. I often woke up gasping for air because my brain was convinced I was dying all over again.

Once my CPR injury had started to heal, I could move around more. I was finally able to do some gentle exercise to gain my strength back. I had started to feel amazing for the first time in my whole life. That is when I knew my surgery was successful. I had never known what I had been missing out on. I was able to move without severe pain, my muscles didn’t ache like I had done an extreme form boot camp exercises, my spine was flexible and didn’t seize up every time I bent, my hip had no pain when walking or running, my chest had stopped hurting, and my stomach was smaller than it had been in years due to the endometriosis bleeding into my abdomen every month. I was so excited to know what a “normal” body felt like for the first time in my whole life.

Then in late October, only three months after surgery, I started to get familiar pains again, my muscles started to get stiff and hurt again, my spine began to stiffen and hurt, my hip began to hurt, my sacral joints shifted again, my chest pain started to hurt and the constant exhaustion kicked in once more. Since we had moved, I had to find another endometriosis specialist. It took a couple months before I was able to see the doctor. They ran more tests to confirm my endometriosis had grown back. I was told that I needed revision surgery. We set a date for surgery after the holidays. Unfortunately, I was not able to make arrangements at the time. I soon noticed I wasn’t able to reschedule this revision surgery because an old fear had crept in. I spiraled into a deep depression because I wasn’t sure I could face another surgery after what happened the last time. Not to mention another surgery to recover from in general, and I wasn’t even fully healed from the first surgery.

However, for my sanity, I decided to travel to a more specialized team of endometriosis doctors in Atlanta, with the Center for Endometriosis Care (CEC). They are more equipped to deal with complicated cases. They are not in network with any insurance company, but they do help you file claims and such. We will also need to be able to have the budget for travel expenses and be able to plan a time around my husband’s job. We do not have any family who is able to come and help during surgery and recovery time, so it is up to my husband to do it all alone.

This year has been all about recovering, physically and mentally. I am finally at a place where I am able to think about the revision surgery and not spiral into despair and depression. As I look back to one year ago today, I am so thankful I had my surgery; even with the complication, I’d do it all over again. It did change my life with 50 percent less pain, and it gave me hope of a better future for myself. While I have been learning to navigate my own mental health, I have been learning to find my inner voice. Even through all the pain and complications, this has been an amazing journey I never expected.