Friday, September 24, 2010

OMG, It's Endometriosis!

Let me start by explaining why I decided to start blogging about Endometriosis.  I sincerely hope I will reach a fellow sufferer or survivor.  I hope I can instill some sort of hope or sense of relief; I want to give my fellow Endosisters a shoulder to cry on, a shoulder that I did not have back in April.  If I can create some sense of camaraderie, if I can give someone the first smile they've experienced in weeks, if I can help someone realize they are not alone... then I will feel accomplished.
I know what it's like to feel completely isolated from everything because of an illness.  I know the anger you feel when someone thinks they know how you feel, when they say, "Oh, I have bad cramps, too!"  I know the desperation that comes with trying to find a specialist.  I know the disappointment you felt when your doctor told you the only way to get pregnant would be through IVF, and even that looks like a slim chance.  I know the anguish and utter confusion that comes with the diagnosis.  I know the frustration you feel when you realize your doctor doesn't know anything more about Endometriosis than you do. I know the suffering you go through when your parents, partners, or friends say you'd feel better, "If you just got out of the house." I know how embarrassing it is to have to argue with the pharmacist over the fact that your doctor denied a refill on your pain relievers, even when they know you need them to be even remotely functional.  I know how worthless you feel when you can't even do the dishes or the laundry or any seemingly minuscule household chore.  I know the look of pity your doctor gives you when you walk into his or her office only 3 weeks after surgery because the Endometriosis and pain are back... again.  I know the horrible abyss of depression that sets in when you finally realize or learn that Endometriosis is a chronic illness. I know what it's like to feel like an absolute burden to your partner or parents or caretaker.  I know the fury you feel when you search online for an "in-person" support group and find none.  None.
I know how hopeless this illness leaves us.  It is a physically and emotionally damaging illness.  It leaves you feeling spiritually dead.  It tries like hell to kill any hope that we have.  I know all of these things because I have felt them-- over and over and over.  A few weeks ago, I got so damn angry that I actually decided to do something.  I decided that I would reach out to every Endometriosis survivor I met and try and let them know that they are not alone.  Endometriosis affects up to 10% of women.  That's 1 in 10 women!  There could be a woman less than a mile away from you, just suffering in silence and alone.  Our doctors haven't made much progress with anything, so I have decided it is up to us.  We must be our own advocates. We must educate ourselves and learn all we can about this disease.  We must fight as hard as we can against this illness that is trying to kill our spirit.  We have something wonderful, something many of us may not have known we had: We have each other.

"In the darkest hour, the soul is replenished and given strength to continue and endure." -Heart Warrior Chosa