From Endometriosis to Appendix Cancer: How I conquered both
(This patient suffered from endometriosis, but it wasn’t until surgery that she discovered she also suffered from appendix cancer. The following is her story.)
I suspect I had endometriosis from the time I hit puberty on. While I complained about my symptoms to my gynecologist, she kept insisting my periods were normal. But I knew there was nothing normal about missing a quarter of school and work from the time of puberty to diagnosis.
When I was 21, I ended up in the emergency room with a burst 10×10 ovarian cyst. The doctor on call performed the laparotomy. Afterwards, he gave me a diagnosis: I had endometriosis. It was so obvious. The symptoms were typical. Debilitating pain that just doubles a person over. Heavy period flow that ruins underwear and ruins pants. Even after being put on birth control for endometriosis, the spotting was bad enough that I learned not to wear white pants.
After the stint in the ER, the doctors and I tried to regulate my periods. I went from one birth control to another to another. The pills never worked. I tried Depo Provera which worked best, but switched to Nexplanon (because of the way it was regulated). That’s what I’m on now. I wish that girls weren’t being taught that freakishly heavy periods are normal. Educators need to teach them about endometriosis. Their doctors should take their complaints more seriously. Too many shouldn’t suffer.
Because I was on birth control, the doctors said the odds of endometriosis returning were slim. Fast-forward 10 years from my original diagnosis. I was, once again, experiencing pain. The doctor doubted it was endometriosis, but theorized it was scar tissue and an ovarian cyst.
After my doctor and several people from a Chicago endometriosis Facebook group recommended that I visit Dr. Miller for surgery to remove the scar tissue, I made an appointment. Dr. Miller agreed that my pain was probably the result of scar tissue, but not endometriosis returning. But I couldn’t function normally with all the pain. I just wanted to get on with my life. He made a plan for surgery to remove the scar tissue, so I could get on.
Incidentally, another endometriosis specialist I had visited didn’t think surgery was necessary. Thankfully, I had decided to go forward with the surgery with Dr. Miller. Because, after I woke up from my surgery, I learned that the pain came from my appendix. According to Dr. Miller, it looked abnormal, was enlarged, and had a mass at the end of it. Dr. Miller had to perform an unexpected appendectomy.
A few days later, there was a message on my answering machine to get into Dr. Miller’s office immediately. I knew something was wrong.
Dr. Miller told me there was mucus in the appendix and that I should follow up with a colon specialist soon. He knew something was wrong, but he wanted a colon specialist to confirm it and break the news to me. The colon specialist told me: I had appendix cancer. I was only 31 years old.
The scary thing is that, not only is appendix cancer incredibly rare, I was totally asymptomatic for appendix cancer. I had trouble with constipation, but I had chalked that up to 10 years of scar tissue from the endometriosis surgery. Most symptoms don’t show until it’s fairly developed. I was so lucky that Dr. Miller caught it in the early stages. My oncologist has repeatedly told me that it’s never diagnosed this early.
With Dr. Miller’s help, I was able to retrieve and freeze eggs before my surgery for appendix cancer.
This year I celebrated two years of clean scans. The scariest time is over, according to my oncologist, and he doesn’t think the cancer will ever come back. Where am I now? I have that much more hope, yet fear and uncertainty for the obvious reasons. There’s that sense of gratitude, knowing only a miracle can account for the fact I was diagnosed unusually early. There is not a day that goes by I don’t think of how truly blessed I am, having Dr. Miller and all these physicians as my guardian angels looking over me.