Cindy and Bill
When I was in high school, I remember going to the school nurse, in such horrible pain, to get Advil for my cramps. She told me "you need to start this BEFORE your period starts, not after." And I remember thinking, "If I only knew when that would be!"
Fast forward to age 20, at the orthopedist’s office. I had had unexplained back pain for over 5 years. Nothing wrong was found through many exams, an MRI and countless hours of fruitless physical therapy. My mom happened to mention to the doctor that she and both of her sisters had endometriosis. Could that be the cause? He thought it was a definite possibility and got me in to see an Ob/Gyn. The Ob/Gyn poked around a bit and dismissively said that she was sure that I didn’t have it. I was only 20 years old after all. I was already on the pill for pain control. There was nothing else to do.
I started dating, my now husband, Bill shortly after I finished my first masters degree. We were married one week after I finished my second. Since I was starting a new career that I had worked so hard to achieve, we waited a few years to expand our family. I was very sad to have to stop the pill, since it had helped my pain so much, but I figured I’d be pregnant in either one month or - GASP - one whole year! But that was my limit. Then I was going back on the pill.
I started learning about women’s bodies and how they work. It is amazing to me how little we are told. I found it all fascinating. After charting my temperature for several months, I went back to my Ob/Gyn and told her that I thought there might be a problem. After all, my mom and both of her sisters had endometriosis which lead to hysterectomies around the age of 40. I was 29 years old at this point.
All my tests were coming back great, except for the progesterone test, which the nurse assured me was perfectly normal. Only when I got a copy of a test result by mistake did I find out that my doctor thought it was abnormal. Based on my research, reading books and going to a medical school library, along with my family history, I called my doctor and demanded a laparoscopy to look for endometriosis. I would feel like a fool if it wasn’t there, but I needed to know. We told almost no one about the surgery beforehand.
The first question I asked when I woke up was, "what did they find?"
Endometriosis was found on my uterus, cul de sac and both ovaries. One ovary was even stuck to my pelvic wall. It was classified as "mild to moderate," but it was enough to keep me from ovulating. After 10 years of doctors denying that I could have endometriosis, I finally felt validated.
But with the endo removed, I ovulated on my own! Five times. That was it. Because of some slight suspected male factor, we did intrauterine inseminations (IUIs) for three cycles. They were all very painful because of distortions in my cervix. The cycles were all negative. After those failures, my Ob’s office said that they couldn’t do anything else for me.
I moved onto a local specialist. He completely denied that my endo had anything to do with our lack of a pregnancy. Apparently he couldn’t read the other physician’s report because he kept talking about how mild it was. Yes, it was not huge masses that distorted my anatomy, but it still was affecting my ovaries.
After only a few weeks with him, we found another specialist, one who listened to me. When I told him that I suspected that my endo was back, he immediately scheduled another lap to look for it. Although he couldn’t see it, he performed a procedure to help with my pain.