Surgery at The Center for Endometriosis Care

Hi everyone!

As you may know, I was diagnosed in 2019 with stage 4 endometriosis. My diagnosing surgery was life-changing for me in a lot of ways, both emotionally and physically. It was so amazing to finally have an answer after 12 years of suffering from debilitating pain. The surgery performed in 2019 improved my quality of life, and much of my pain and issues subsided for about a year and a half. But unfortunately, endometriosis has no cure and inevitably grows back after surgery. About a year ago, I started having intense pain again and was having bouts of passing out. I could feel how swollen and inflamed my uterus was and started having issues emptying my bladder. I felt it was necessary to start seeking treatment again because my symptoms were affecting my life every single day, even though I was following all protocols to keep my pain and inflammation under control.

In August of 2020, they found over 30 cysts attached to both my right and left ovaries, and my uterine thickness was much higher than it should be (a sign of the endometriosis). I continued to monitor my symptoms and start conversations with my doctors about treatment options. In March of 2021, I had another ultrasound and MRI done to see if any of the cysts had dissolved or grown. Not only did I still have all the cysts, but one had grown to the size of 5inches, as well as many other bad signs like free fluid in my pelvic cavity, etc. When discussing with my specialists, this is more than enough reason to go ahead and have another surgery to clean out all of the cysts, growth, and scar tissue that has built up since my last surgery.

This is the reality of endometriosis. You try to monitor and suppress the growth, but it is inevitable that suregry will be needed once the growth becomes too much and affects your quality of life. As of now, my pain is so constant and every day, that I am only able to work 26 hours a week. My stress has skyrocketed, and I have panic attacks leading up to my periods knowing they are going to leave me weak, sick, and writhing in pain. It wreaks havoc on my body every single day, and I long for the day that I don't wake up completely nauseous and in pain. I've been blacking out, passing out, avoiding sex, losing sensation in my legs, having intense brain fog, and suffering from chronic fatigue to just name a few symptoms. I hate not being able to use my body in the ways I want to. I am only 25, yet I feel like I barely have the energy or capability of casually hanging out, going out to meet new people, or attending events I want to be at.

My specialist and I decided that it was time I try and send my case to The Center for Endometriosis Care in Atlanta, Georgia. This is THE place for specialized and state-of-the-art care for endometriosis. They are one of the only facilities treating thoracic endo (a new discovery that proves that endo can grow anywhere in the body versus the thought that endo only grew in the pelvic cavity). The CEC only takes on complex and difficult cases, and you have to apply to be a patient for their surgical team. It was a lengthy process and a lot of work, but I was accepted to be a patient for surgery at The CEC. I am so thrilled to be a patient of The CEC as they claim that with the aggressive approach they are taking with my case, the chances that my symptoms will come back as bad as they are now are only 15%. I will always have endo but to hear that my pain shouldn't come back as bad, hopefully ever, is mind-blowing. The only downside to all of this is that because of the aggressive approach they take to surgery, insurance does not cover it. They would not be able to perform the type of surgery they do if insurance was involved. It is incredibly frustrating that insurance does not deem this necessary, because, without this type of surgery, I'd be on track to have surgery every 2 years because of how aggressive my endo grows back. I'd much rather have this surgery, and then hopefully not another for 5-10 years, versus every 2 years. This surgery is going to change my life drastically, and help me live a life close to pain-free.

So, unfortunately, because they can't take insurance, I am paying for this surgery out of pocket. My current estimate is somewhere between $50,000-$80,000. It's hard, because it all depends on what tools they use, what they end up needing to do or not do, and how long I stay in the hospital. As of now, they plan on a 4-hour surgery to remove my appendix, potentially my right ovary, all the cysts and check my bowels, bladder, and abdominal cavity for scar tissue growth. I will be in the hospital for 23 hours (it saves me thousands of dollars to stay 23 versus 24 because at 24 hours they consider me inpatient care). I have to pay $8,500 to the doctor upfront before surgery ($500 of that I've already paid) and $17,000 to the hospital upfront to receive a discount that will hopefully bring my grand total down to about $20,000. If I pay that $17,000 upfront, they give a big discount but again because they don't know what tools they will use and how long it will take, they still might (and likely will) send me a bill after the fact. These estimates also do not include pathology and anesthesiology. They couldn't give me an estimate just yet. I just scheduled my surgery today for September 21st, 2021.

All of this said I am looking for whatever help I can get. Moving to Chicago wiped out all of my savings, and because of the severity of my pain and symptoms, I was unemployed for 4 months, and then once I started working I have only been able to work 26 hours a week. I am an hourly employee and make under minimum wage plus tips, which tips help so that I can stay afloat with bills. I am working as hard as I can to find ways to earn some extra money, but I am running into many walls. Anything helps, truly, and it is all to help me fly to Atlanta and receive the best care I can so that I can live a full life again.

If you want to check out The CEC here is their website: https://centerforendo.com/about

They have so much information about their facility and history, and it's a good read to inform yourself about the history and complex nature of my disease. If you have any questions, please feel free to message me. I'd be happy to answer anything.