My email in-box has been flooded with requests for any information I have on The Center for Endometriosis Care. I have been completely overwhelmed by the moms, sisters and friends writing to me on behalf of someone in their lives that is suffering from endo. And I have been saddened by the young women writing to me, some of them suicidal, that have cried out to me for help because they have this dreaded disease.
THIS IS FOR THEM
Of course, it's still much too early to know the outcome of the surgery...... time WILL tell.
Right now, she is still taking prescription drugs to deal with the pain of the surgery. They did a lot of digging around in there, moving internal organs, cutting on them.
But she is feeling better and better each day.
While we were still in Atlanta, I was able to pick up a bunch of information from Allie's doctor to bring home with me. The information I was able to gain just blows my mind....why is it not in every OB/GYN's office across the country?!
I have information entitled Endometriosis and Abnormal Bleeding, Endometriosis in Teenagers, and Is My Endometriosis Coming Back?
But by far, the most important piece of paper I have is simply titled The Center for Endometriosis Care.
I would love to scan and copy the entire thing for all of you out there desperately in need of help, but let me just give you the intro for now:
The Center for Endometriosis Care (CEC) is formed around four principles:
*recognizing subtle disease in all its manifestations
*removing all endometriosis while preserving a woman's organs
*performing pathological examination on all excised tissue
*treating women with respect as partners in healthcare
And I am here to tell you FIRST-HAND, they live up to this.....and more!
When I originally found the CEC last spring, I wasn't sure what to expect, but I felt it was our last hope. After putting us through the ringer, our insurance company finally gave us the go-ahead to receive treatment at the center in Atlanta at in-network rates. And at $15,000 just for the doctor's fee alone, it's not cheap if you're not in-network. Once insurance agreed to cover it due to lack of any resources in our area, we ended up paying about $1500 for the doctor's fees (that's after our family deductible was met for the year) and about the same for the hospital fees. We are still waiting to receive bills for anesthesia, labs, etc. Of course, we would pay anything to take this pain away from Allie, so I'm not complaining, but I want you to have a realistic idea of the costs. I'm sure it will be different for everyone.
In order to set up surgery for Allie, I had to get ALL of her medical records gathered up and fill out bunches of forms from the CEC. I put together a whole packet for their doctors to review and mailed it to them. We heard back from one of the two doctors at the center fairly quickly and scheduled surgery at that point. We had to schedule it around flights and recovery time, so we planned a Monday surgery because they were able to do a pre-op appointment at their office early that morning and do surgery later that same day.... perfect for us because we were flying and staying in a hotel, so we wanted to keep the trip as short as possible, and we had to plan for recovery after the surgery.
The UGLY part.....I'm not gonna lie, probably the worst part of the surgery was the bowel prep the day before. Beginning Sunday (which was also our travel day), Allie was on a liquid-only diet AND she had to take medications aimed at completely clearing her bowels.
In other words.... dulcolax tablets followed by an ENTIRE bottle of miralax powder mixed in with a gallon of gatorade that had to be drunk over a two-hour period, followed by more dulcolax tablets and finally an enima performed the morning of the surgery.
Sorry, but it's the ugly truth.
We had to be at the doctor's office Monday morning at 7:30. It was our first time meeting the doctor. We started out in his office where we talked about Allie's history and the procedure was explained. I was absolutely floored by the questions the doctor asked. Not only did he seem to understand exactly what Allie had been going through (and that was a first for us!), but he knew exactly where the pain would probably be located and other issues that might be going on based on her answers!
Not only did he believe us, he seemed to know what we were going to say BEFORE WE SAID IT!!!!!!!!!
Blood was drawn, urine collected, and then an exam of Allie, to include a vaginal ultrasound.
We left the doctor and went straight to the hospital. Allie was checked in and prepped in the same-day surgery center. Just before her scheduled surgery, her doctor came into the room. He made sure we were both doing well, and then......
He took my baby's hand and he prayed. Words that I needed to hear. Words that Allie needed to hear.
He asked that God be in control.
I thanked him and she was wheeled away.
Let me stop here for a minute. If you have any doubt that you are doing the right thing, and then you have a doctor that you didn't even know was a christian and you just met for the first time stand there and pray openly and out loud in front of you without any hesitation at all.......
there goes that doubt.
The surgery took about two hours. The first part of the surgery was exploratory. They did what was called a hysteroscopy to explore Allie's uterus. The main part of the surgery involved locating the endo and cutting it out. Remember..... this is what's different about this clinic. They don't just burn the top layer off, they actually cut the spots out.
Oh, there's so much information I want to relay, but it's so tough to write it all down. I feel as though I could write a book about our experience!
When the surgery was over, our doctor came out and talked to us. He brought lots of pictures. Pictures of the endo inside Allie.
She was riddled with endometriosis.......STAGE 3 out of 4.
It was on her ovaries, it was on her bowel (which was the cause of her constant diarrhea).
It was no wonder she had been in so much pain.
He cut out most of it. There were a couple of spots on her ovaries that he had to burn off instead- he wanted to be more conservative there to cause as little scar tissue as possible and preserve her ovaries. Her ovaries were stuck to the walls of her uterus by endo and had to be cut away- they were then wrapped with a special product to help keep them from sticking again while they heal (it will disolve on its own).
I'm sure I'm getting some of this wrong, but this is the best I can do....there's so much to take in!
I talked to him about the endo returning. Her prognosis, according to him, is that she has only a 5% chance of recurrence. He bases this on his thought that endo, once cut out, will not return. The belief by the specially trained doctors at the CEC is that women are born with endo. The other theory is that there is some sort of leak that allows the endo to flow outside of the area it should be in each month when a woman cycles. If you believe that one is born with it and it is able to grow each month, then the theory that cutting it out will get rid of it works because the source of it is gone and can't return. And they have so many cases of success to back up their theory. It makes sense to me because Allie started off having such severe pain with her cycles at age 13! It's been growing in there all along. It also makes sense because there are so many young girls with painful periods that aren't diagnosed until they get older and are trying to have babies.
Of course, only time will truly tell, but we have nothing but hope!
Again, I have all the literature, and I would be more than happy to talk to anyone about it if you want more info! I would love to copy what I have and mail it to you! Please, if you have questions, continue to email me and I will do everything that I can to help!
We feel like Allie has been saved.
It's that simple.
So this, well, this is for them.
All the women out there still suffering without hope.
I don't know what my role in all of this will be, but there is no doubt in my mind that we have been through this with a bigger purpose in mind. God has plans for Allie, and I think he has plans for me. I hope that I will be used to help other women out there come back from the brink.
We've been there...... we know.
There is HOPE.
HOPE for them.
*please, please leave me questions and comments on this post! It's important for other's to know that you are out there. There are so many of you! We have to get this information out there to help everyone who is suffering. Get the facts!
Here is the Center for Endometriosis website: www.centerforendo.com