I'm feeling whole for the first time in over a month. There's still a sadness though. Knowing that in just a few short weeks, our lives will be turned upside down. Pain and struggle will be an everyday reality. I'm looking hopefully to the future. A future of no painful periods. No periods. At 35, I should have at least 15 more years of them. But, I learned a few weeks ago that endometriosis has won. It was a hard fought battle, but I have no choice but to call it.
It started more than 20 years ago. At 11 years old, painful heavy periods were my reality. I thought I must be a wimp. I sometimes think that my terrible memory is a a safety mechanism. At 18 years old, the bouts of pain were not regular but were unbearable. When they would hit, the doctors would say, "stomach flu" or "std" (um, no) or "food poisoning". My health teacher told me about endometriosis. She said to pay close attention to my cycles. This pain may be related to ovulation. She knew. I believed. That wasn't enough to make a doctor see it.
About 13 years ago, I stopped birth control pills. Slowly the periods got worse. Month after month more symptoms appeared. I'd have heavy bleeding, clotting, painful and bloody bowel movements, low back pain that kept me up all night. Doctors were not interested. In 2004, I was able to convince my gyn that I had most of the symptoms of endometriosis. I was immediately referred to a specialist. The details are fuzzy (selective memory loss). In April of 2005, nine years after the first debilitating ovulation pain, I had my first laparoscopic surgery. Endometriosis is confirmed! Stage IV, visible to the naked eye and a case that the doctor claimed she would encounter only once in a career. Still not sure what that means exactly!
I spent the next six months getting injections of Lupron Depo. The chemically induced menopause was manageable. I had some hot flashes. Emotionally I felt like a zombie. Sometimes I felt like I was sitting across the room watching my life go by, like an out of body experience! I'm not sure how much of that my family knew at the time. I had become quite the little actress over the years.
The Lupron served a purpose. Much of the endometriosis had dried up. A small nodule remained in the cul-de-sac (the small area between the uterus and the rectum). Laparoscopy #2 followed in January of 2006. The surgeon quickly realized that the nodule would require a more intensive surgery.
This is where my story got intense! In March of 2006 a gynecological oncologist attempted to separate the nodule that connected my uterus and my colon. My colon perforated. Introduce gastrointestinal surgeon. After removing 6" of the sigmoid colon, I was fortunate, thankful, amazed that I had walked away from the surgery without a colostomy but not without infections and intestinal challenges.
The following years flew by! I experimented with Depo Provera and Pycnogenol. I developed severe eczema on my hands. I was diagnosed with an endometrial cyst in the cul-de-sac. I continued to monitor for simple and complex ovarian cysts. I knew that it was only a matter of time before the time bomb would go off!
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