Wednesday, January 22, 2014

EndoMarch2014: Week 2

What does EndoMarch2014 mean to me?

It means a chance to have a voice.  Not just for myself, but for the women who can't/won't/don't know enough to speak up.  To have a voice for the women who's lives have been taken over by this disease.  For the women who had to wait a decade for a diagnosis.

I got "lucky".  I was diagnosed 5 years after I started suffering, and about 1 year after I started suspecting that endometriosis was the culprit.  I got diagnosed at 21 years old.  I've only had one surgery, and due to excision done by a true endo specialist, I've been almost completely pain free since I healed.  Fatigue is my biggest hurdle since surgery.  But just because I got "lucky" does not mean that this event means any less to me than someone who's been suffering for 20 years.  I still push for awareness, change, and education.

Awareness - Most people don't know what endometriosis is, and have never even heard of it.  When it comes to women's health issues, if it's not cancer, people have never heard of it.  Endometriosis may not be cancer, but that doesn't mean it's not a serious disease.  Endo can completely end your life as you know it, leaving you exhausted, bedridden, and in constant pain.  There are even recorded cases of endo being fatal.  Sounds to me like it's a condition that the world should be aware of.

Change - There needs to be a change in the way most doctors deal with women complaining about pelvic pain.  Saying "that's normal" or "you just have bad cramps" is not okay.  Being told that "it's all in your head" is revolting.  No one deserves to be told that they're imagining this pain.  There needs to be a change in the availability of good medical care.  No woman should have to go into such debt because there's not a single endo specialist covered by their insurance.  The world needs to change and start realizing that these things are serious problems.

Education - I feel so, so strongly about this aspect.  So much of my free time is spent doing research and educating myself about endometriosis.  Even before I was diagnosed, I spent countless hours learning about it.  I feel that my dedication played a huge part in getting diagnosed so quickly once I suspected endo.  I had prepared myself with what to say, and found a specialist to go to without any guidance from my regular OBGYN.  I was not going to be ignored.  I was not going to be put on yet another different kind of birth control.  I was going to leave with a promise of surgery, and faith in a doctor.  All too many women are so trusting of their doctors.  It's scary to live in a world where we can't always trust doctors, but so many doctors are very uneducated about endometriosis.  This leads to many women being uneducated about the medical condition that is wreaking havoc inside their own body.  There are too many women being told that birth control, Lupron, or a hysterectomy will end their suffering.  Birth control does not stop or reduce the growth of endometriosis.  Lupron is a terrifying, menopause-inducing chemotherapy drug with very real, lasting side effects.  A hysterectomy (if endometriosis is truly your only cause of pain) has a decent chance of doing absolutely nothing to relieve you of your pain, since endo resides outside of the uterus.  These are things that we (and doctors) should all be aware of.  Talking about these things isn't using "scare tactics" as I've been accused of, this is reality.

EndoMarch2014 is about coming together.  It's about me and my endosisters uniting as one to bring awareness and attempt reform.  It is so important for us to band together and fight for what's right.  This is an incredible movement to be a part of, and I hope that it's just the beginning of my journey of advocacy.

Monday, January 13, 2014

EndoMarch2014: Week 1

Over the past year, I've witnessed an incredible desire to bring awareness to endometriosis.  This desire should be prevalent, considering this disease is way more common than you may think.

Since I got diagnosed in February of 2013 (we're almost at the 1 year anniversary!), I've been on quite the journey.  I've been in contact with some amazing women who are not only supportive, but incredibly knowledgeable as well.  They don't just have the ability to comfort, they possess the knowledge to know when to tell you that going to the doctor isn't giving in.  This journey has also led me to drift away from some people that I used to be close with.  It's showing me some peoples' true colors.  But, if these people were meant to be in my life, they would still be here.  Endo has shown me who really cares, and who isn't willing to put up with the complications of being friends with someone who has a chronic illness.  A huge positive outcome of this journey is how closely I now know my body.  Endo has made me pay such close attention to my body that I feel so in tune with it.  I know what's causing the physical feelings, and I'm working on learning how to control them to whatever extent I can.

What is EndoMarch2014?  It's a much needed awareness event.  It's a time for sufferers, doctors, nurses, family, friends, and supporters to all come together on one day to being awareness to this illness.  This needs to stop being an unheard of condition, and there needs to stop being a taboo towards talking about a woman's reproductive system.  This needs to stop being a condition that, on average, takes 10 years to diagnose.  Can you imagine, suffering for 10 whole years without even knowing what's wrong with you?  Being told that it's all in your head?  Endo doesn't just cause physical pain from the internal bleeding and scar tissue formation.  It can also cause anxiety, depression, and a wealth of other mental health issues, because one person can only be told their crazy so many times.  It's like you're being punished for being ill, as if you didn't feel as though you were being punished already.

This event is taking place on March 13th, all across the globe.  In the US, we will be meeting in Washington DC.  We are gathering to bring awareness to this disease, to bring awareness to the need of better medical training, to bring awareness to the necessity of more education.  We're gathering to make people aware.

We need to be heard, and I am so proud to be a part of this.