Monday, March 30, 2015

Stories Like Mine

I know this is the first post I've done in a long while.  I don't like writing without inspiration, because that leads to boring posts.

Saturday, March 28th, 2015 was the 2nd Annual EndoMarch.  This past weekend was filled with meetings, reunions, laughs, tears, and lots and lots of stories.  It's the stories that have driven me to write this post.

The vast majority of women who suffer from Endometriosis all have a similar story.  10+ years to get diagnosed, many times being misdiagnosed, numerous surgeries, most of them unhelpful, unnecessary hysterectomies, you name it.  They're horror stories.  They break your heart into pieces and make you cry.  No one should have to have a story like that.  No one deserves it.

But their stories are not at all like mine.

Yes, it took me ~6 years to get diagnosed, and that's far too long.  But I was never misdiagnosed, I never had drugs forced upon me, and I did not let any doctor/surgeon touch me until I found a specialist.  When I let myself acknowledge that was I was feeling was NOT normal, I started researching.  So much researching.  I was blessed enough to have an endosister find me, and let me ask her so many questions, share my fears, concerns, and confusion with her.  She directed me to her excision surgeon, who was in Boston.  I called and set up a consultation, and right then & there, we agreed to proceed with surgery to diagnose and excise, if endo was found.  That's right.  I had my diagnostic lap & excision done in the same procedure.  I have only had one surgery.  I have never been on Lupron.  I have not had any organs removed.  This is not to say that I was never told it was all in my head, or that I just have "bad periods", because I was told all of that.  But that's nothing compared to the medical torture that other women have been put through.

I want there to be more stories like mine.  I wish I could make all future endosisters' stories like mine.  I had access to the information I needed, and I'm thankful that I knew enough to go out and look for it.  Not everyone is that lucky.  I'm unsure how to reach the girls and women who need help before they go under the knife.  I'm unsure how to get through to people, when they're being told incorrect information from their doctors.

Early diagnosis and excision is CRUCIAL when it comes to regaining your best quality of life.  The longer you wait, the more irreversible damage is done.  The longer endometriosis is allowed to ravage your body, the more scar tissue is formed, and even the best of doctors can only do so much at that point.  We need to educate younger, and we need to push that the first person to open you up is a skilled expert, not your regular OBGYN.  Sure, your regular doctor can diagnose endometriosis, but that's all they can do to help you.  Ablation is not helpful, and is not successful, long term.  Only a specialist should be allowed to do procedures on you, or else you're just putting yourself through an unnecessary surgery.

I don't know how I'm going to do it, but I want to make a change.