Monday, January 20, 2014

What ‪#‎endomarch‬ means to me personally..

Today I would like to let you know why this movement (Million Woman March for Endometriosis - MWMFE) is so extremely important to me.  I have suffered from Endometriosis for quite sometime now. I began suffering from it as a young girl at the age of fifteen, and was diagnosed at seventeen.  I have been surviving this disease for 20 years.  Being diagnosed with an invisible illness is horrible, but being diagnosed with one that has no cure is simply devastating.  I have lived with a sense of hopelessness since that diagnosis. I felt that this was a disease that I would suffer from as long as I live.  I felt there was no hope because most people don't even know what it is or that it even exists, and unfortunately most doctors don't understand the disease or know how to treat it effectively. Learning of this march sent joy throughout my entire body!  I'm not sure that there are words to describe the flood of hope that rushed through me!  I am forever grateful to the team who put this magnificent movement in motion.  I know now that we are going to find a cure, and that when people hear of endometriosis, they will know what it is.  We will not suffer alone in the darkness anymore! We will end the silence and finally be understood.

Currently the only treatments for endometriosis are surgeries, hormonal treatments, and pain medications to help deal with the pain.  Hysterectomies are commonly recommended, but this is not a cure or fix in the majority of cases.  It requires a very skilled excision doctor to make a hysterectomy successful, and unfortunately there are very few of them.  You see if endometriosis has implanted anywhere in your body and it isn't completely excised, it will continue to grow and feed itself. Contrary to many beliefs endometriosis does not need your ovaries to produce estrogen for it to grow, because it produces it's own.

Being diagnosed at a young age was devastating, not only to myself, but to my family as well.  I had been seeing a doctor from the very beginning of my menstrual cycle, I went in every month in agonizing pain.  The doctors told me that periods are sometimes really painful and that I had a low tolerance for pain.  I was made to feel that I was exaggerating, when in fact I felt as if my insides were attacking my body.  They would send me home with Naporoxen and I would cry and lay in the fetal position for days.  Periods were long, never less that seven days and some up to fourteen.  Nothing helped, but a heating pad and lots of meds would sometime take the edge off.  I would pray to God for it to end, I was in extreme pain that physically made me sick, fevers, vomiting, fainting, etc.  I continued going in every single month and finally I requested to be sent to another OB/GYN  in a larger city in hopes they would have more knowledge or technology and possibly could help me figure out what was wrong with me.  I knew at sixteen that something was really wrong.  I saw a gynecologist in Charlotte, NC who after the first visit said she thought that I might have endometriosis. She explained what it was to my mother and me, which didn't explain much at the time.  She scheduled me for an emergency laproscopic surgery and I went in the following week and the diagnosis was confirmed.  I was diagnosed with Stage IV endometriosis, during this procedure they found that my fallopian tubes were completely sealed shut with endo and scar tissue.  I was told that I would never, even with medical assistance be able to conceive a child because there was significant damage to all my reproductive organs.  This news was devastating.  My bladder and intestines were significantly affected as well.  I did later conceive a child which was a huge surprise as you can imagine, she is my miracle baby (She's 12 now, so I guess she isn't a baby, but she is and will always be my baby). I am one of the lucky ones who were able to conceive despite the odds against my body. Throughout my journey with endo, I have had many surgeries, hormonal treatments (side effects made things worse in most cases), and thousands upon thousands of dollars in doctor bills and unsuccessful treatments.

I'm getting ready to celebrate my 35th birthday and I still suffer immensely, but now I know that there is hope, and that does make it a little more comforting.  Through this experience I have become a Precinct Manager for the state of North Carolina, and I'm honored that I can help make a difference, not only for myself, but for all the others who suffer. I also march for the women and young girls who will one day stand in the unfortunate shoes that I have stood, and for them it won't be so hopeless. 

This march means the world to me!  It means that someone cares, that someone took the time to say "These women and girls need our help" and for that I am eternally grateful.  It means that we may not have to suffer our entire lives.  It means we will not continue to be misunderstood and judged unjustly. It means HOPE!  I will stand united with women like me and we will make a difference, and for that, there simply aren't enough words to say THANK YOU! 

For more information on the march please go visit

1 comment:

  1. I am so proud of you Krystal! Not only having to endure what you have had to but to speak out and make others aware and be a spokesperson - that is important! I truly hope that with your help and others like you spreading the word that someday there will be a cure!