A return to Lupron.
Or a referral to a pain clinic.
Those were the options that were given to me on Friday morning when I spoke to the nurse at my doctor’s office.
The first two weren’t really new revelations to me. It's not like we haven't talked about them in the past. But it was the last that cut me like a knife.
It just felt so… hopeless.
A pain clinic is not a place I ever thought I would find myself considering. Certainly not at 27 years old. I have managed to avoid becoming reliant upon pain medications for this last two years, solely through sheer determination and an aversion to being out of it. And now, this is what I'm being offered. All I'm being offered. Until I'm willing to take more drastic measures.
A life of pill popping and surviving in a drugged out haze.
As the endometriosis continues to ravage my body.
Causing who knows how much more damage in its wake.
Until I am ready to do something more permanent.
I was crying before I even hung up the phone. I know my doctor’s office wasn’t trying to blow me off. I know they weren’t trying to hurt me.
But I couldn’t help but feel like they were telling me there was nothing more they could do to treat the endometriosis for me. Not until I'm willing to make some choices I'm not yet willing to make.
I felt like they were telling me that, probably because that’s exactly what they were telling me.
And again… I felt hopeless.
So, I cried. My entire drive to work, with my dad on the other line, I sobbed. Deep, heavy, painful tears.
Because the only thing I knew for sure was that none of these options were acceptable. None of them would work for me. None of them led to a life I wanted.
And yet… they felt like all I was left with.
It wasn’t until I had been at work for a few hours (doing everything in my power to keep my emotions under control) that I remembered an e-mail.
An e-mail I had gotten just days after my last failed IVF.
One recommending The Center for Endometriosis Care in Georgia as my last line of defense.
The woman writing the e-mail claimed that they had had an answer for her. That after years of suffering, they had given her relief.
At the time, I had been too overwhelmed by grief and heartache to think about my next step. I politely thanked her for the information, and then tucked it away in my saved e-mails.
I just couldn’t contemplate doing any further research in that moment.
But suddenly Friday, research was all I could think to do.
And so, I researched. I dove into the CEC’s website, devouring every morsel of information I could find.
Reading about excision surgery, which is apparently the way to go in terms of treating endometriosis.
And is also apparently not what most doctors are doing.
From what I could gather, most doctors are taught to treat endometriosis through drugs. Lupron, hormone modification, birth control pills – whatever it takes. They are taught to cut only to diagnose, and when the pain becomes unbearable. But to otherwise rely heavily on those drugs.
And when they do the cutting, it isn’t really cutting at all. It is rather a burning and melting of the bad tissue. Time saving measures to clear the bad stuff out without being too invasive.
But this burning and melting isn’t permanent. In fact, it leaves remnants of the endometrial tissue everywhere. Making it easy enough to grow right back should someone have a severe enough case.
Which is probably why doctors are taught to avoid it unless absolutely necessary.
With excision surgery though, they cut it away. All of it. Every last ounce of bad tissue is excised, not burned.
And from what I can tell – that makes it stay away.
Or at least, it makes it stay away longer.
Although at this point, I don’t know much. So if you have had excision surgery, I would love to know more. Anything you can tell me really. The good, bad, and ugly.
I need to hear it all before deciding what to do next.
In my confusion over why this option had never been brought up to me before though, I tweeted about the CEC, and I got back mostly good information.
As well as a referral to another doctor in California doing the same surgery – Dr. Cook with Vital Health.
I tooled around on both websites for a bit longer before submitting an inquiry to each.
I have to be honest that if I’m going to have surgery out of state, I would definitely prefer California to Georgia simply because I have such a large support system in California already.
And if I'm going to be stuck in the hospital for a few days - I'm going to be needing lots of visitors.
Lots and lots!
But I really am getting ahead of myself here, because I haven’t even talked to the specialists from either clinic yet.
Still… these are specialists. People who are focused completely on treating endometriosis.
Meanwhile, rumor has it that my doctor is thinning out her practice so that she can start focusing on the OB part of her OBGYN.
She just wants to deliver babies.
Again – I love my doctor. But I couldn’t help but feel a little slapped in the face when I heard that recently through the grapevine. Like now that I can’t get pregnant, even my favorite doctor will be dumping me soon enough.
But these specialists – maybe they know something she doesn’t. Maybe, in their years of practice focused solely on this disease, they have actually come up with solutions that my small town doctor hasn’t been able to offer.
And maybe, as much as I love and trust my doctor, her telling me that there isn’t much more she can do to help me at this point was the best thing.
Because it is forcing me to seek help elsewhere.
So yes, I submitted inquiry forms to both Dr. Cook in California, and the CEC in Georgia.
I heard back from Dr. Cook’s office almost immediately, and am still waiting to hear back from the CEC.
My records have been compiled and sent off, and I have a free phone consult with Dr. Cook tomorrow at 3.
I have no idea what is involved in this. What is involved in going out of state for surgery. Whether or not my insurance would even pay for a dime of it.
All I know is that the gloves are coming off.
(Courtesy of Google Images)
And this girl is getting her fight back.
Because I refuse to accept that my only options are giving up, embracing a drug I hate, or submitting myself to a life of pain management rather than treatment. I refuse to believe that those are the only choices I have left.
The gloves are coming off.
I’ve been knocked out more than once by this disease in the last two years. I have the black eyes and busted ribs to show for it. My nose is bloodied and it’s clear based on my recent dating disaster that I probably have a concussion which has affected my ability to effectively judge the character of others.
But the gloves are coming off.
And this time; I have every intention of winning.
