writing my endostory

Recently, an endo blogger and advocate that I love and get so much strength and inspiration from, decided that she would start featuring endo sisters stories on her blog. Naturally I volunteered. I want as many people as possible to know that this disease exists and it fights hard to bring us down. I've been working on writing it all out since then. Its been a fairly interesting experience.

It was challenging to really think back and figure out where my endostory began. In the end I think I settled on 13. That is the first year that I remember having periods so painful and heavy that I would pass out and miss school on a regular basis. That is also the year that I was put on hormonal birth control for the first time. crazy to think about that now. I didn't give anything about it a second thought at the time.

fast forward about 8 and a half years and that is when my current endo story began. In that period of time I was on several different hormonal birth controls- always trying to find one that would last a long time. When I started having problems again I was using the nuva ring, and it had been working for nearly 3 years, my longest stint yet. But the pain was bad. Really bad. prevented me from doing so many things, including having sex with my partner, and that was very challenging for our relationship. My fight to get diagnosed took all of the energy that I had, but I was still also in nursing school, working and trying to have a life! I was still adamant at that time that no matter what was going on inside my body I was not going to let it take over. I've since given up that notion. I've found a new normal, and it just happens to be one thats days are filled with chronic and persistent bleeding, pain, fatigue and some days so many tears of grief for the life I feel I no longer get to have.

My endo story has evolved a lot. 2 surgeries. multiple medications. many months of bed bound medical leave. and now? a possible second diagnosis of another chronic pain and bleeding disease.

some days it feels never ending. and in some ways it is. There is no cure, and only a handful of treatments that help "most" women. I've already tried a couple of these. My options are becoming somewhat limited and that has made me reconsider a lot of things, lately.

anyone who knows me knows that I was born to be a mom. in every sense of the word. The thought of someday being pregnant and having the opportunity to experience that kind of love and closeness with a tiny human. My own tiny human too. The recent volunteering activity I have done has only made this feeling stronger. I am a mom. but there are lots of way to be a mom, and they don't all involve being pregnant yourself.

I am not ready to give up on that dream yet. I know I may have to at some point, but not yet. It is too much apart of who I am. And a hysterectomy is not a cure for endo. I could still live in pain, and also have the heaviness and grief of my longest and strongest dream disappearing. I'll make new dreams, no matter what my new diagnosis may be and no matter how that impacts my life and my choices. But it's still hard to let go of the dreams you've spent so many years making.

Some days the heaviness of even the contemplation of losing that part of myself feels too much to bear. I don't feel like i'm living at the moment. only surviving. and I only recently returned to the living after my last surgery. I'm ready for it!

thanks for reading friends,

with love,

Em