How It All Started (Part 1)

My journey with Endometriosis began long before I ever knew what it was. Technically it began before I even got my first period, although I had no idea what was happening at the time. I was a young pre-teen who was just always in a lot of pain and frequently took trips to the ER because of appendicitis scares that never turned out to be anything but just that... a "scare."

My mother would often tell me about how much pain she endured every month, especially when young... as did her mom, and probably her mom's mom too. It "ran in the family" and so was surely nothing to worry about. After all, isn't pain just a "normal" part of every woman's life once they start menstruating? This rationale, along with my pediatrician's assurance that I was perfectly fine, lulled me (as well as my parents) into acceptance. The pain just became a part of my life, of who I was, and we just dealt with it as best we could. As I grew older, the pain grew worse. Eventually it became bad enough that I would miss school on occasion because of it. My legs would go numb from the pain, and my mother would sit with me and rub them for hours.

By the time I was 16 it was bad enough that my mom took me kicking and screaming to my first OB/GYN. After taking my history and asking a few questions (not even as much as an exam was done!) the doctor quickly wrote me an Rx for birth control pills and told me that this would fix everything. These problems were "common" in teens and that eventually my body would adjust, but that probably I just had a "low pain tolerance" and would need to be on the pill forever to keep me content. I took the pills and hoped for the best. After all, she was a doctor... she MUST know what she's doing.. .right?

Fast forward a few years. Now a college student, I was off on my own trying to cope as best I could without the aid of my mom during those rough days each month. The pills didn't seem to be doing much for me anymore, the pain was getting worse. I went to new doctors... they all said the same thing. "Oh you just have a low pain tolerance, maybe we'll try a higher dose... and here, why don't you just take these pain killers!" More pills to pop, great. So the hormones got stronger and my tolerance began to wane. Not only was I still in pain but now I constantly felt sick to my stomach, my moods were all over the place, and each month certainly did not get any easier. Finally, when I was about 22 I found a doctor (while I was living in California for a short while) who mentioned Endometriosis to me. I had never heard of it, but everything she described was dead on to what I had been struggling with for years. I took that information and ran with it, doing as much research as I could.

I moved back home again shortly thereafter and went to a new doctor. I mentioned my previous doctor's tentative diagnosis and this new doctor all but laughed in my face. She said I was "too young" to have something that serious. "This is a disease of the 30-40 somethings, there is no way you could have that" she kept saying. Upon my insitance, she reluctantly agreed to give me a referral to have an ultrasound done to check things out. Nevermind that Endo cannot be diagnosed that way, but what did I know? (And apparently she didn't know very much either!) Of course the ultrasound showed nothing amis, and triumphantly she talked us out of having the Laparoscopic surgery that would be the only way to really know for sure.

Not much later I got married and moved again. Once again, I went to new doctors, all of which told me the same things and stuck me on yet higher dosages of birth control pills. This went on for years until I finally found the one doctor who listened to me. At the age of 26, I was FINALLY diagnosed with Endometriosis, after a Lap. I sadly fall into the all too common group of women that on average go 10 years or more undiagnosed due to the ignorance and unwillingness of doctors to listen and take their patients seriously. Most unfortunate still is the fact that pain was not the only battle-wound left behind from my untreated Endo... we would soon find out that it was the cause of something far worse than any physical pain... infertility.