Wednesday, February 12, 2014

A 9 Year Journey

Today marks 9 years since I was first diagnosed with endometrisos.  That seems so weird.  I remember most of it like it was just last month, but other parts seem so distant.
We knew in January of 2005 that I had a golf ball sized cyst on one of my ovaries.  The doctor had said my body would absorb it in time and it wouldn't be an issue.  Late on the night of February 11th, I began having much more intense pain than I'd been experiencing the past several weeks.  Mom was in town (I was in college) for the weekend, and we'd just finished seeing a movie.  After about an hour of me sobbing my eyes out, she took me to the ER.  We arrived about 10:00, but I wasn't seen until after 1:00 am.  Ugh.  The pain was growing worse, and I was just a crying mess.  The OB/GYN on call saw my records about the cyst and figured something was wrong with it.  During emergency surgery, he found it was a blood cyst, had ruptured, and was gushing blood into my abdominal cavity.  Joy.  He also discovered lots and lots of endometriosis, all developed to a variety of different stages.  He didn't feel comfortable enough to clean out most of it because it was on nerves, ligaments, inside and outside of my uterus, bladder, colon, ovaries, fallopian tubes, and ureter.  Double joy.  At least we had a diagnosis for the agony of pain that was roaming throughout my body.
Several weeks after that surgery, I wasn't feeling any better.  The daily pain I had consumed everything I did.  Because of the location of the endo growths, my legs would sometimes 'give out' on me from the pain.  Simple tasks like walking to class, driving, and going up and down stairs were nearly unbearable.  The doctor had put me on birth control pills to try to stop the growth of the endometriosis and to control the pain.  I was also on Tylenol 3, but since I'm allergic to all codeine based meds, I was also on Benadryl to not get hives.  Let's just say I don't remember much about anything from that semester, and after that semester, I had to go the rest of the journey pain med free because I just couldn't handle the hives.  We did acupuncture, yoga, and everything else we could think of to help me cope with the pain.

Mom took me to some specialists in Houston at various Med Center hospitals.  The consensus of all of them was to put me on Lupron, a drug that would throw my 20 year old body into menopause.  The purpose of that was to 'restart' my system and hopefully trick my white blood cells into attacking the endouterine lining as it sheds into the abdominal cavity each month.  Most women's bodies do this naturally, but mine wasn't for whatever reason, hence the massive growth of endometriosis.  I had no peace about trying this drug and refused.  Mom was convinced I was just being stubborn, but something just wasn't right.
We finally found at Texas Women's Hospital a microscopic surgery specialist whose main focus was endometriosis.  He looked at my first surgery report and said that there was no way Lupron would even stand a chance of working if there was still endo growing in my body, which we knew there was.  He scheduled another surgery with the goal of lasering out all of the endo growths.  That surgery took over 2 hours.  When I woke up, I felt completely normal.  It was amazing!  I had no idea how much living in constant extreme pain had worn me down for 6 months. 

He then suggested trying the Lupron to restart my system.  Since I knew the endo was out, I was ok with trying it.  The monthly shots into my hip were unbelievably painful, and often left me with a limp for a few days.  My hip hurts just thinking about it!  I don't recommend menopause for 20 year olds.  That was totally an experience I dread having to relieve in a decade or two.  Ugh.  I wouldn't have minded it if the process had worked, but it didn't.

After the Lupron, the doctor wanted me to have an IUD in the hopes of stopping my period.  Let me first say that no woman who hasn't given birth to children should ever have an IUD.  They are made for ladies who've been 'stretched out a little', and that wasn't me!  After 6 months of an IUD and still having periods, I convinced my doctor to stop this approach.  In August of 2006, I went back on birth control pills, hoping they'd stop my periods.  No periods means no endouterine lining shedding into the abdominal cavity each month which means no endo can grow.  Unfortunately by Christmas I was having to have surgery number 3 to clean out stage 4 endo growths yet again.  Bummer.
After that surgery, the doctor upped the hormone level in the pills.  I hated the side effects, but I wanted to be healthy more than I cared about the hormone levels.  I managed to graduate on time (all through the grace of God alone!) and landed my first teaching job.  My periods hadn't stopped though.  And by Christmas of '07, I had my 4th clean out surgery.  Ugh.

The doctor upped the hormone level again, and this time we had success!  I still hated the side effects, but I could teach without being in pain, there was no chance of an endo recurrence since I was all cleaned out and not having periods, and things were finally looking up.  It had been a long 3 years.
Unfortunately, or, in my mind, I could have cared less, four laser surgeries left quite a toll on my girly parts.  The inside of my uterus was a battlefield of scar tissue.  My ovaries were so scarred no one was sure I even ovulated anymore.  I was blessed that I didn't have scar tissue pain in my abdominal cavity.  All of this left the doctors saying I'd never have children without IVF.  I personally feel IVF isn't for me because that's too close to playing God in my mind.  At the same time, I have prayers journals since age 12 telling God I only wanted to adopt someday.  I was totally ok with this infertile diagnosis.  I knew God could still do anything He wanted, but I was quite content adopting someday.  Once I found a man who felt the same way, life was seriously looking up after that 3 year battle! 
All of this long story to say, you can imagine the surprise when we found out we were pregnant this past November.  Say what?!?!  Like I said though, God can do anything He wants anytime He wants, and He obviously needs this little boy come July. 

All in all, I'm just thrilled that I've not lost my mind over the last nine years and that I've been healthy now for 6.  God is so good not to let a relapse occur, and I'm grateful each day!

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