Today is my two-year endo-versary! What the heck is that? It’s been two years to the day since I underwent excision surgery at the Center for Endometriosis Care (CEC) in Atlanta, by the awesome Dr. Sinervo!
You may be thinking, isn’t it kind of silly to celebrate the anniversary of a surgical procedure? In a word…no. Wouldn’t a patient in heart failure celebrate the anniversary of the day they received a heart transplant? That’s what it’s like for those of us with endometriosis. The day you have skilled excision (because not all excision is created equal) is like getting a new heart. It puts you back on track to living a normal life again. Perhaps that sounds overdramatic to many of you. But until you have experienced the level of disability and pain that endometriosis can cause, you won’t truly understand what it’s like to be freed from the chains of this disease.
You can read my whole story about my journey to excision here (and follow the links for parts two and three). But it wasn’t a decision that was made lightly. Yes, it was an easy decision to make in the sense that I had become so debilitated that I had to have something better done than the ablation surgery my OB/GYN had performed before I knew any better or really knew much about endo. I educated myself on endo and excision and talked to women who had had the procedure and where they had gone for their surgery.
As I said previously, not all excision is created equal. One factor that determines whether or not a surgeon is considered an expert in their field is the number of operating hours they have, that is, the time they have spent perfecting their skill in the operating room. Your surgeon can claim they perform excision, but are you only the 50th or 100th patient they have operated on? It stands to reason that they won’t be as skilled as a surgeon who has performed over 1000 or even 2000 of these procedures. Endo lesions can appear different even in the same individual, as in my case, and it takes a skilled surgeon to recognize that. It’s also helpful if your surgeon has the capability, or at least an excellent team at his or her disposal, to remove endo from challenging places such as the bowels, liver, and diaphragm. Otherwise what good does it do to leave it behind? So try your hardest to go to a surgeon who can do it all. That’s why I decided to go to the CEC; the experience and skill possessed by Dr. Sinervo is in a realm that quite literally only a handful of surgeons in this country have achieved. And if I was going to have a life-changing surgery, I wanted it done once (hopefully), correctly, and by the best.
So we traveled over 700 miles to Atlanta. I immediately felt at ease as soon as I walked into the CEC’s office for my pre-op appointment. Every member of the staff was caring and compassionate. And Dr. Sinervo was gentle and reassuring. David and I were instantly reassured that we had made the right decision.
I spent the evening of my 29th birthday on the potty in the hotel room doing my bowel prep to prepare for surgery. Nothing prepared me for the horror of that experience. ? At least the next time I had to do it two years later, I was more experienced and knew a few tricks to make it easier.
My surgery was an all-out success. Dr. Sinervo confirmed I was early stage II and removed endo from the following locations:
- Left ureterosacral ligament*
- Left pelvic side wall
- Right cul-de-sac*
- Right ureterosacral ligament
- Right pelvic side wall
- Posterior uterus
Locations with a * indicate where I had endo burned off in my first surgery with my OB/GYN. Now, based on what we know about proper treatment of endometriosis, does this surprise anyone? Didn’t think so. I gave Dr. Sinervo a big bear hug for finally fixing me! As a side note, I also had a presacral neurectomy (PSN) done that immediately helped with my lower back pain. What a relief!
So all this time later, how do I know I’m still free of endo? Well, I do still have pelvic pain. The pain became quite intense again starting in the summer of 2015, so, assuming it was scar tissue after confirmation from Dr. Sinervo that scar tissue (also know as adhesions) was the most likely cause of my pain, David and I made the decision to return to the CEC in July 2016. As it turns out, the cause of my pain was neither adhesions nor endo, but you can read about that unexpected adventure here! But Dr. Sinervo did another thorough search of my pelvis and confirmed that, nearly two years after my excision, I was still endo-free!
So what is causing my pain? There are many reasons for pelvic pain besides endometriosis, but I was also diagnosed with adenomyosis, as both surgeries confirmed my uterus is “soft and boggy,” which is indicative of adenomyosis. I believe that is the cause of my pelvic pain today, as the pain is mostly central in my pelvis.
So as far as endo is concerned, I’ve kicked it to the curb! Hopefully for forever. And I believe that getting my life back from a debilitating disease is a cause for celebration! ? And so, I am spending today celebrating my endo-versary!