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Living with a silent disease

With March quickly approaching, it’s time I talk about something very important to me. While it is a bit of a buzz-kill to be talking about this so openly, I often get a lot of questions about it.

As many of you know (or maybe don’t), I have a disease called Endometriosis. March has been deemed Endometriosis Awareness Month because of how many women suffer from this condition. So, what is it? Basically, it is a condition where cells from your uterine lining grow in different parts of your body (where it’s definitely not supposed to). This disease can cause pain, irregular bleeding and sometimes infertility. What makes me most angry about this disease is how much we don’t know about it!

I was first diagnosed at the age of 15, after collapsing in pain and nearly missing a flight just to go to the ER. For four months, I received multiple wrong diagnoses. From constipation to “oh, it’s probably just gas,” I was miserable. I remember only being able to eat kiwi, crackers and tea because of my constant nausea from all of the random medications I was prescribed: Lortab, Vicodin, Darvocet just to name a few. After about four or five ER trips (I can’t remember), my very first OB/GYN finally said, “You know what, let’s just cut you open and see what’s going on. Sure enough, it was a condition I had never heard of.

From that point on, I consumed myself with research, support groups, blogs.. anything to help me get a grasp on what just happened. As far as I know, no one in my family had experienced fertility issues, except a great-grandmother who had passed away from ovarian cancer. Is it genetic? I don’t know.. no one does.

Fast-forward six/seven years, and I’m still a lab rat. From Lupron to the regular Depot Provera, I’ve tried just about everything. And the worst part about moving, is having to do it all over again. Finding a good OB/GYN as well as a reputable Fertility Specialist are just the first steps to ensuring you’re not cooped up in bed with cramps. In October 2013, I had my second surgery, where they found the Endometriosis taking over my ovaries, liver, bladder, bowel and where my appendix used to be.

“Surgery isn’t the cure,” the fertility specialist said. “It will probably come back. We don’t know why, but it will. Come back to us when you want to get pregnant.” (This was after he showed me cool before and after pictures of my innards.) Trying to explain to people that it is not a curable disease is difficult. They always ask “Well what’re you supposed to do?.” Well…I don’t know.

Having this has given me more faith in God’s plan. I hope that, long in the future, he gives me a husband who is open to adoption. I hope that eventually He puts some wiz kid on Earth to find a cure. But, all in all, I always hope He gives me patience when I enter a war zone with menopausal symptoms every three months. LOL.

As a disclaimer, don’t feel bad for me! This is life as I know it. You adapt, you learn and you eventually conquer. I’m not sad or angry about it, there are a ton of harsher diseases out there… so I consider myself lucky.
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