Who, What, Why, When, HOW....

WHO:     I have Endometriosis, Stage IV Endometriosis, also referred to as Endo.  I was diagnosed just over 10 years ago by laparotomy.  I have had 3 surgeries so far.  I have denied a fourth surgery about 2 years ago, because I felt hopeless at the pain and scar tissue the surgery would cause.  The type of surgeries I have had have been ineffective.  

I am now fighting my insurance company to get approval for a full removal of my deep stage IV Endo and Endometriomas (cysts of varying size attached to my ovaries) by an Endometriosis Specialist Surgeon.  

WHAT:  Endometriosis is a condition that affects 176 million women across the globe in different stages.  The average time until accurate diagnosis is 7-11 years.  Endometriosis is a NON CURABLE disease that is listed as not being life threatening.  But the truth about Endometriosis is that it may not directly end my life, but has directly halted my life in many ways.  . Many women with advanced Endo begin to present with all sorts of endocrine related ailments.  Deep Endometriosis can risk life by blocking bowels or blocking urinary arteries etc. and lead to emergency procedures or situations that could be life threatening.  

I will be making blog posts of my research of studies and information with the newest scientific studies of Endometriosis.  Currently there is not a lot of research out regarding Endo.  I will include links, descriptions and other information that may help you understand endo and other chronic illnesses.  I will also be posting on my fight with Kaiser Permanente Southern California.  I will also post updates on my quest for proper treatment.

WHY:  If you will choose to read this blog, you will join in support for me on this part of my life journey.  I am writing this blog as a release for my frustration, to gather all of my material in one place and most importantly to provide my loved ones with a place to learn and grow in the understanding of My Endo Life.  Until there is a cure or my Lord decides to heal me, this is my path.  I have spent a over a decade knowing I had Endometriosis, but essentially burying my head in the sand regarding proper care or treatment of the disease.  As a result, I am to the point where I have been almost stopped in my tracks.  My daily life is altered by an ever increasing gradient of pain.  I am left having to be very cautious about what I agree to do and sometimes I just have to cancel life to deal with the pain.  

The emotional challenges of Endometriosis are also why I am doing this blog. I don't look sick (thankfully) but it can lead people, from afar, to conceive me as lazy, aloof or uncaring, attention seeking or selfish.  I struggle with telling people details about my illness, and risk being left out of things, or risk them pitying me.  I struggle with not telling people what is going on, because I am inherently honest, and genuinely want people to know and want people to be educated and to be able to relate to me.  You can see my dilema.  By the way, I feel quite dramatic sometimes when I share about this... but this is actually quite dramatic at times  I also struggle with looking forward to the future, or making any future plans.  Even a dinner date next week can leave me in a sweat.

Another emotional struggle is the lack of accurate information that exists for this disease.  Many sound, bright Gynecologists, believe they have all the information necessary to effectively treat Endo, but in reality their education of the actual disease and their knowledge of most recent studies is usually ineffective at best, harmful at worst.  Many women are still duped into believing lies and myths about Endometriosis, resulting in the loss of their Uterus and sadly sometimes their ovaries, which throws them into a whole new set of health problems and often still leaves the Endo thriving. < Although every case is different and some women had no choice for other reasons compounded by Endometriosis>  There is conflicting information everywhere and studying sources and studies is long and challenging.

Much of what you will be reading is my constant desire for the most current information to make the best decisions for MY personal care and to be able to share the information that I have learned with other women who fight along side me - - other women whom I affectionately refer to as my Endo Sisters.

WHEN:  Over the last year and a half, my pain level has been slowly increasing.  I have had a few trips to ER for severe bouts with pain.  I have been put on an harsh hormone medications that I have been given too many times than what is safely known to give, that have given me lasting side effects that compound my problems instead of reprieve them.  I have also refused any more hormone altering medications.  

I am fighting currently to have surgery with Dr. Andrew S. Cook, of Vital Health Institute in Los Gatos.  

HOW:  How do I manage?  Well I have an amazing support team of a very understanding husband and children, as well as sets of parents that rescue me constantly. I have a husband, sister and friend, and my endo sisters to hear my heart when I feel like I can't carry my load any longer.  And I have a strong Faith in God that holds me when it would be easy to question "Why me?"

In fact, God never promised me a rose garden.  I have been promised His steadfast Hand to hold me and His Faithfulness to guide me when I can't see the pathway through the darkened valleys.  I have been promised that no matter what I face I have a Strong Tower to protect me and teach me.  I will learn and grow from the adversity that I now walk.  I have been promised a future like none you can imagine....  A future of freedom..... Heaven.

Bloom Where You are Planted!