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.