May 18, 2010

That Was Then… Today we have a voice.  Today We Have Hope!

Over the course of 20 years I watched my entire world slowly collapse on me, but that was then.
My day started like that of any other typical 15 year old.  As I smiled at my outfit choice, as I thought to myself, “today is going to be a great day at school”.  Halfway through the day, as I sat in the principal’s office, waiting for my Dad to show up I remember thinking, “Life is not fair”.  In the end it was decided, other girls my age dealt with their period and they didn’t miss so much school.  We left the office, my Dad with a reassuring arm on my shoulder.  Nothing was said but we both knew the outcome.  No matter how bad the pain, I simply couldn’t miss even one more day of school this year.   Mine was an unknown, unaccepted, and misunderstood disease.
As I look back, I think about the years, how they take so long and yet they go so fast.

I was in my early twenties, a few weeks after my 2nd horrific surgery. I sat in yet another office for what began to feel like routine judgment.  This time it was the office of my OBGYN.  She was a busy lady with a thriving practice.  She said I was healing fine and as she wrapped up our consult she mentioned I have Endometriosis.  The questions began pouring out of my mouth.  “Endo what?” She said it’s too complicated and simply sent me home with a video, that she believed, would explain it all. 

The years and the ½ a dozen plus surgeries that followed were painful even sometimes unbearable but if I could take back only one day it would be the day THAT doctor left me hopeless. 

According to the video and our follow up there wasn’t much to be hopeful for.  I would probably never have children and if the pain became too much there were shots and hormones and hysterectomies.  But that was then.  I endured some treatments (never hormone shots) and many surgeries and from time to time THAT doctor would tell me if there was any hope of having children I should try before I’m 30.  What did I care; I was single, riddled with pain and hopeless.  Eventually the pain branched out and became unmanageable.  In my mid 20’s I revisited THAT doctor who happily informed me that the “new” pain in my lower left abdominal area couldn’t be from endometriosis.  She recommended I seek out other types of doctors.  Oddly, my hope began to return.  But after countless dead ends, tests and years I found myself back in this woman’s office.  Hopeless.  She was quite angry to see me.  I mean who was I to second-guess her?  As I left her office sobbing her receptionist hugged me and slipped me the name and phone number of her OBGYN up the street.  It was, however small, a beginning. 

I was slowly learning that I have choices.  When the pain returned again 6 months after my 7th surgery (1st with this new doctor) I started managing my pain with hospital visits, heavy medication and sedation.  As I entered my 30’s childless, I lost the drive to keep my business going.  I wondered if I had saved up enough to live off of until perhaps one day the pain subsided. 

My Mom showed up at my house one morning to comfort me. I sat in her arms and cried for what seemed like years.  “One more surgery my Laura Lee?” I knew that I had to find answers.  Time was running out.  Yet I refused to believe that this was it for me.  I met with a dozen specialists I studied and learned and asked questions.  I became my own best advocate.  If they said, “try hormone shots” I left, if they said, “remove my reproductive organs” I left.

Then one day in October 2006 a complete stranger gave me the name of the endometriosis specialist that changed the course of my life.  Dr. Kanayama, his staff, their dedication gave me a chance to relive that one hopeless day almost 20 years ago. 

Today I live in New York with my wonderful husband Jimmy.  This October we are happily anticipating the birth of our 1st child.  To all the women who have and still suffer with Endometriosis I say, “That was then.  Today we have a voice, today we have hope!”