One year ago yesterday I underwent surgery to remove a cyst from my ovary: a simple, routine one-hour procedure. However, it turned into an exploratory, diagnostic, and excision surgery for a chronic, incurable disease. A parasitic, weed-like infestation created by my own body, blood, and tissue: Endometriosis. The surgery ended up taking four hours. Yes, four grueling hours of worry for my Mom and Jim as they sat in the waiting room, completely in the dark of why my surgery was taking so long.
I’d had no idea what Endo was. But it had something to do with the severe pain I’d felt almost my entire life since my teenaged years. The pain I had grown accustomed to being told “It’s normal,” by friends, family, and the medical community. My surgeon showed me pictures of the procedure, pointed out the unnatural dots that speckled my insides and the web-like scarring which bound organs together, which he had done his best to remove. And said it will come back…
A month later we began a six-month treatment of Lupron Depot injections to “shock the pool,” so to speak : hopefully giving my body a fighting chance to delay the recurrence of my Endometriosis return. This drug was originally created to treat men with prostate cancer, and has been hailed by many women as “poison.” Many in the medical community believe you can only take up to 12 months of Lupron in your LIFETIME. It was Hell. Pure Hell. I hated it, but endured the six months. My last injection was on January 19, 2015, and I didn’t begin to feel like myself until much later.
Now? Now I’m on a continuous birth control pill, again with the idea to help my body fight and delay the recurrence of the implants and scarring. There are a few side effects of the pill, but they’re far easier to handle than the Lupron or the Endo pain. And I’m still struggling to regain a full sense of “me” before my surgery.
During this past year, I’ve had one relapse of the Old Pain (update 8/12/15: there have now been three relapses since surgery). Three consecutive days of pain that knocked me on my ass and kept in me in bed. And my belly button occasionally aches at the incision site, a strange pain that makes you want to stop breathing for a few minutes…I’ve learned A LOT about myself, this disease, and the community of women who share this disease. And am grateful for the decreased amounts of pain I have been in. Incredible difference.
An incurable disease that affects 1 in 10 women, approximately 176 million women worldwide. A disease which varies from woman to woman, can invade ANYWHERE in the body (including the brain, heart, and lungs), has no agreed-upon cause, and is typically treated with surgery and pain pills. Hopefully one day there will be a cure. There needs to be. This disease isn’t going anywhere and is only going to get worse.
I’m grateful for Jim. His patience and understanding during this journey, the lifestyle changes, and his desire to learn about this disease with me. For my family for being there when I need them. For my friends, EndoSisters, strangers for their shoulders and endless support. You guys are amazing. And there’s no way I could have made it without you. Thank you.
What a wild ride it’s been.