24 October 2013

Fight Like a Girl | Endometriosis

endometriosis awareness, endometrioma surgery
Endometriosis: invisible pain.

It's been a while since I updated, but since I never spoke about endometriosis and ovarian cysts before surgery, it could be considered a lot. I never wanted to write about something that couldn't be treated because it would sound like this: I hurt, I hurt, I hurt.

There is no cure. There is nothing. Just endless pain of varying degrees until you qualify for surgery.

Then it becomes a gamble.

I had my post-op early because I was still in so much pain but things are healing well! That's great news! Abdominal surgery is super invasive, especially when you're a toddler mom and have to bend over 348q70 times a day...and that is what they told me. So I'm right on track. More great news.

OH! They did tell me something I didn't know: the cysts aren't just filled with blood. They are filled with ENDOMETRIOSIS! I don't know why it was never explained to me that way. I just thought it was rogue bleeding. No, and that is why they do their thing so differently than "empty" ovarian cysts. The endo is growing in there...spreading...

Now I understand the need for constant ultrasounds when I have cyst pain. If they are regular they will reabsorb...but if they are filled with endometriosis (then called endometriomAS) they will not. Surgery becomes the only fix. Otherwise they pretty much just let it grow wild since they can't keep going in there.

These days it feels like slight-moderate endo pain. I mostly feel it in my back after a long day of motherhood...or in the front when Tristan crashes his skull against the incision site while giving me a power-hug. It's getting there!!!!

I get very anxious. Healing is nearing completion but after several years of chronic pain it is a scary thing to believe it will be gone - and scarier to hope that it will not return.

Last week I picked up my new lightweight poly-pro hula hoops. I'm still not ready to swing anything around my waist but there are plenty of ways to hoop with your arm.

On a side note because someone asked: hooping with endometriosis is very painful...but LIFE is very painful. We do what we can within the bounds of what we deem tolerable. It's a high-impact sport. You're swinging a hoop over your abdomen and the back-pain that comes later is killer. But I did it anyway because of the joy it brings. Doing something that makes you happy can make you stronger, I think. It won't be everyone's joy so use your own discretion. If it's too much to use your waist try just going arm tricks (though that gets your back pretty good, too). There are leg tricks. If none of that is tolerable STOP. It's as painful to let go of something you love emotionally as the physical side of things but at least you can heal from one.

Since there is so much more endo awareness online than before I have noticed there is often a lack of balance. While this disease deserves attention and awareness it is my biggest hope that people who have it don't let it consume themselves. It isn't all you need to talk about: that's dwelling. There is no shame in going to therapy to help compartmentalize...I understand the need to vent. Find a support group (there are many) and try to limit your rants to them. It's draining on me (so I'd imagine even moreso on people who don't have it or understand at all) to read nothing but misery.

Even in a land of pain you can find your oasis.

Take care of yourselves but don't let endo consume your outside as well as inside. Don't let it win. Fight.

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