Where does anyone in the 21st century turn to for information? The Internet, of course. Which takes us back to where we left off at the end of my last post. Hopeless, in more pain every day than anyone should have to endure, and looking for support from people who could relate to what I was going through.
In one particularly large and seemingly reputable Facebook group, the word “excision” and a place called the Center for Endometriosis Care caught my eye. These women were claiming to have had surgery with a specialist who could perform this excision thing and they were pain free or almost pain free quite a ways out from surgery! I had to know more. So I once again sought the great and powerful
I learned there are several ways of treating endometriosis out there, most of which involve superficial methods of simply burning off the surface of endometriosis lesions (ablation, coagulation, and fulguration are all terms you might hear in reference to this.) These methods leave endometriosis cells underneath the burned-off lesion, which is why when using these methods, endo will often grow back in the same places over and over again, resulting in women needing surgery after surgery. As such, these methods result in anywhere from a 40-100% recurrence rate of endometriosis, even within as soon as a year after surgery (or about 2 months, in my case). Now think about that. If a physician told you, “We’re going to take you to the OR and do this surgery, but there’s about a 90% chance it won’t work”, would you want that surgery performed on you? I certainly wouldn’t, but due to a lack of education surrounding endometriosis and its proper treatment, millions of women are being subjected to these subpar treatments at the hands of physicians who have no business treating the disease.
Thankfully, there exists a surgical method called excision, which is a type of surgery it has been said (anecdotally) less than 100 specialists in the United States are able to perform. Excision is basically complete resection of endometriosis lesions, cutting around them and under them to get clean margins and remove ALL endometriosis cells. But it is by no means a simple procedure because endometriosis can show up virtually anywhere: peritoneum, pelvic ligaments, ovaries, Fallopian tubes, uterus, rectum, bowel, bladder, appendix, even the diaphragm and lungs can be involved. Think cancer, but everywhere. And no endo is created equal; the lesions can appear blue, black, red, white, clear, you name it, all within the same patient and can be as tiny as grains of sand. Imagine trying to find all that with the tiny light of a laparoscope.
A surgeon who is going to treat endometriosis completely must be prepared to operate across multiple organ systems, operate on extremely challenging disease presentations in those organ systems, do it with as little collateral damage as possible, and do it while enduring criticism from those physicians who do not understand endometriosis or pelvic pain’s effect on women. This is a huge challenge that very few surgeons are willing to take on or should try to take on. Yet meeting this challenge is what an endometriosis surgeon must do. Few are called and even fewer are chosen.
~Dr. David Redwine, excision pioneer
I remained skeptical of this Center for Endometriosis Care (CEC) place I was reading so much about. It seemed too good to be true. That is, until completely by chance, I stumbled across a YouTube documentary specifically about excision surgery that featured the CEC. The words of then-medical director Dr. Albee brought me to tears: “Don’t give up the fight. Hang in there.” I instantly knew that whatever it took, even paying out of pocket, I would get to Atlanta to have excision surgery at the CEC.
Once I had convinced my family that seeking a second opinion 700 miles away was a good idea, I registered with the CEC and filled out the necessary paperwork. I mailed it to Atlanta with trepidation, not knowing if I would be accepted by this wonderful Dr. Sinervo I had heard about, the current medical director of the CEC.
Less than 2 weeks later, at the beginning of September 2014, I found myself staring at an unfamiliar area code as my cell phone rang. Accidentally letting it go to voice mail, I nearly hit the floor when I heard Dr. Sinervo’s voice in the voicemail: “I think we can help you.” I immediately called back and briefly spoke with him, going through what procedures he thought would benefit me. As soon as we finished the call, I started sobbing with relief and even my husband David got some tear action going as we realized that I was going to get help from undoubtedly one of the best excisionists in the world.
My surgery was set for October 29, 2014, the day after my 29th birthday. The long wait was a trying time. I made a countdown calendar and celebrated each shift I finished, knowing I was getting closer and closer, but all the while still in significant pain, tethered to my heating pad. It was also an emotionally difficult time. I was completely useless all summer and fall. Now, I will be the first to admit that I am on many occasions a lazy person. But when it got to the point that clean laundry would just sit in the laundry baskets because I was hurting too much to fold it and put it away? I could barely do the smallest task. But it helped to know that everyone was looking forward to the surgery as much as I was. My coworkers would ask on an almost daily basis, “How many days until Atlanta?” (As they had also previously repeatedly asked “Have you mailed in your records yet?” and “Have you heard from Atlanta yet?”)
Finally, very early in the morning on October 28th, we were on our way to the airport for a 6:00 AM flight to Atlanta (I jokingly stated to David I hadn’t been up at 2:30 AM on this day since the day I was born.) Once we arrived in Atlanta, we waited for rush hour to pass before getting our rental car. Upon doing an early check-in at the hotel, we briefly went shopping for foods I could eat, such at chicken broth and apple juice, in preparation for the bowel prep I had to do that afternoon.
Finally it was time for my pre-op appointment at the CEC office, a place where you instantly feel loved and cared for by all the staff. It was wonderful and reassuring to finally meet Dr. Sinervo. He explained how he anticipated my surgery would go and what each procedure entailed. I was going to have excision of endometriosis, a cystoscopy to check for interstitial cystitis, a hysteroscopy to check my uterus, chromotubation to check for blockages in my Fallopian tubes, and a presacral neurectomy to quell my lower back pain. In addition, I would be given platelet-rich plasma, which is the plasma part of your own blood (after being drawn and centrifuged) used to irrigate the surgical areas to promote faster healing. Following a physical exam, which this kind man made as gentle as possible (helped by the presence of the incomparable nurse DeeDee), it was time to go back to the hotel to start the dreaded bowel prep. I told everyone not to worry; that I was going to have such a fantastic party on my birthday that day that I would be spending all night on the toilet!
Indeed, the bowel prep was decidedly one of the more unpleasant experiences I’ve had in life. It didn’t take long for the fun to begin. But I was able to occupy myself on the potty with entertainment news from Marvel Studios (“Captain America 3 IS Civil War? And the next Avengers movie will be 2 MOVIES?! Oh happy day!”) and national news about the Ebola outbreak (and guess where I was? Atlanta. Yes.) I was even able to squeeze in a shower. But things got really bad after midnight. No more sleep for me!
But I was so close. Just a few more hours and I would be in the hands of a highly skilled surgeon who was going to fix me. I just had to make it a few more hours. Continue reading my story in The Gold Standard.