IT’S FINALLY HERE!!!! I’ve been waiting so long that it doesn’t even seem real. 5 Years ago today I was admitted to the hospital for crazy symptoms that ended up being my intestine collapsing in on itself and after a week in the hospital, I was scheduled for a diagnostic scope surgery a few weeks later. As I mentioned in my previous post, that day led to a laparotomy with a colon resection and the most difficult 3 month recovery out of all 8 abdominal surgeries I have had. The diagnosis was endometriosis.
I get “what is endo?” a lot. It is so hard to explain. But think of it like a disease that has no cure and can fuse all your internal organs together due to adhesions caused by uterine like tissue growing outside of the uterus. So up to this point in my 5 year journey with this disease (I likely had it forming many years before that), I have only had ablation surgeries. Check this out:
Non excision surgery is ablation (cauterization of endo spots within the body)
See that? They are digging out the roots instead of just pulling the leaves (burning) or removing the weed they can see. YOU SEE WHY THIS TECHNIQUE IS NOT EFFECTIVE? 1 in 10 women has this disease and while everyone’s story is different, 3 ablations up to now have not helped. That technique results in recurrence 80% of the time. I spent the last 6 months researching the excision. I found the best specialist (in my opinion) and he is right here in OREGON. I will travel with Justin tomorrow 5 hours north to Portland and have this specialty surgery on Tuesday morning. I became my own advocate. I did the work. I’m Paying the RIDICULOUS insurance premium and went into massive debt to pay for my out of pocket max for the year in advance of this surgery. I will be staying in Portland a week to recover in a hotel.
I utilized all my resources to get me to this point. When I started having pain again (worst it had been in 5 years) I wasn’t about to waste my time with another failed ablation. It’s a band aid to a vengeful disease.
I just keep telling myself:
colored by yours truly
Here are just a few of the issues I’ve been dealing with over the last 5 years:
This is why I chose excision. I really can’t tell you how excited I am to finally have the moment upon me. It’s been the hardest year of my life without a doubt. I’ve been robbed of my ability to work full time, to exercise, to commit to living a normal life, and the ability to adjust normally to my new life in Oregon.
I am seeing an endometriosis excision specialist, Dr. Fogelson, out of Pearl Women’s Center in Portland. I am beyond confident with my choice. After sending my records over, he surprised me with a friendly phone call just to discuss a few things, and this was months ago! As we waited, I learned more and more about this procedure and more about Dr. Fogelson. There are only a small handful, maybe 100,of these specialists in this surgery in the country. It is not something that your regular OBGYN is equipped to perform.
I AM SO READY.
I have refused to take suppressor drugs like Lupron because of their terrible side effects and don’t take opiates for the same reason. I have changed my diet, started alternative therapies, and sacrificed immensely. While the cause is still being researched and debated, I am focused more on creating awareness of this disease that keeps women from having families, keeps women bed bound, and destroys relationships all while causing depression and anxiety.
I have experienced every single one of these symptoms and even more. If nothing else, I am hopeful to feel even a small improvement in any of these areas.
We may be in debt. It will be a long recovery. It may not be the only diagnosis and I may need future treatments and possibly a hysterectomy. *WHICH IS NOT A CURE TO THIS DISEASE*
But we won’t know until we do this. SO LET’S DO THIS.
I am grateful for my amazing husband and all the people in my support structure that have kept me sane this last year. You mean the world to me.
So, cheers to 2018 being the year I get my life back.
Catch y’all on the flip side. Much Love