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On my 11th birthday, I got the worst present I've ever received in my entire life, and I'm including a package of dashboard wipes I got from an aunt one Christmas when I was 15 and couldn't drive.
On my 11th birthday, I got my period, and my life has been one series of miserable experiences after another ever since.
As an avid reader of Judy Blume, Margaret had taught me that teenagers were supposed to get their periods, not 11-year-olds. So as I was barely into double-digits, I was traumatized enough as it was. But mere days after that first menstrual onslaught, I began experiencing symptoms that would continue for another 20 years: debilitating abdominal pain, nausea, intestinal distress, migraines, Grade-A bitchiness, weight fluctuation, and the desire to punch holes in the wall for no other reason than that the color of the wall displeased my little, cream cheese brain.
My first visit to the gynecologist followed soon after, and let me tell you, nothing makes an 11-year-old's day like having a tiny old man shove his fingers up your vag.
I had my first laparoscopic surgery at 12, which confirmed what everyone suspected: I had probably been growing endometriosis in my small child reproductive organs for years, long before I even got my first period.
Reproductive issues ran in my family; my mother had endometriosis as well and had had a hysterectomy in her early 30s.
My doctor began me on a series of hormone pills and birth control, causing my weight to balloon, which is supper fun for a sixth-grader. I got shots, regular internal ultrasounds (which are as enjoyable as they sound), and eventually a uterine nerve ablation, which is the cutting of the uterine nerves to try and control chronic pain.
All that happened after that surgery was that I had a seizure because of a medication complication and now have a killer scar that makes me look like an abdominal victim of the Joker.
Through all of this, I had to come to terms with the fact that having a baby was probably never going to be in the cards for me. Personally, the idea of being pregnant had never struck me as all that appealing.
When my sister was pregnant with my nephew and put my hand on her belly to feel him kick, I screamed, “ALIEN!” and scrambled as far away from her as I could. I hope to adopt one day if I can ever afford it, but I knew from the outset that my future child would be baking in someone else's oven.
Then the day came when I just couldn't take it anymore: the pain, the sickness, the fact that my reproductive organs were controlling my life and I didn't even intend to use them for anything but show.
So I went to my now even older man doctor and told him that I wanted a hysterectomy. There was a really good chance that removing my uterus and ovaries would stop the endo in its tracks and at 27, I was firmly exhausted. My doctor looked at me for a long, awkward moment and then said,
“But don't you want a baby?”
“No. I want to adopt.”
“You say that now, but you might want a baby.”
“No. I don't. I want a hysterectomy.”
“Well, what does your boyfriend think?”
“Why does THAT matter?”
Pat on the leg.
“Talk to him first. HE might want a baby.”
I didn't say another word. I gathered up my things, walked out his office, and began searching for a new doctor. While new doctor suggested removing an ovary first to see if that would slow down the progression of the disease (it didn't), he agreed to the hysterectomy shortly there after.
So one week before Christmas, less than two months after my 28th birthday, I had a full hysterectomy. Bye uterus! See ya, left ovary! So long, cervix!
New doctor found a LOT of endo spread all over my abdomen, and even on my stomach, but it seemed to all be taken care of. I was clean as a whistle, and I actually felt amazing for the first time in my adult life.
It lasted for three years.
The aching in my abdomen came back first. I thought maybe (hopefully) I had a bladder infection, but after every possible embarrassing test was done on me, bladder causes were ruled out and I was sent back to my gynecologist.
He suspected scar tissue, but said there was nothing to do about that, and essentially told me “tough titties” and sent me on my way. But the pain kept getting worse and “tough titties” wasn't good enough after all I'd gone through to get where I was.
So a family friend referred me to a specialist in another city who agreed to do (more) exploratory surgery to see what was brewing and surprise surprise...
The endo was back with vengeance. Essentially, endometriosis is Jeremy Irons in the third Die Hard movie and my body is John McClane who is just getting too old for this shit.
New New Doctor removed the endo AND the scar tissue, both of which were causing the pain, and put me on MORE hormones, which are messing with my weight and initially gave me hot flashes like a 60-year-old woman going through “the change.”
I'm 32 years old, I have no reproductive organs, and my body is still somehow producing something that only comes from an organ that is currently chilling in the biohazard pile of a hospital graveyard with the hinky gallbladders and inflamed appendixes.
I wanted to share my story so other young women out there living with endometriosis know they aren't alone. But most of all, I want you to know that if you are in pain, if you struggle every month with symptoms that seem out of the ordinary, tell your doctor. And don't let them dismiss you.
Your doctor is there to help YOU, to make your life better, and to make you healthy. Don't let yourself be bullied into believing you're irrational or overreacting. Pain isn't normal.
The occasional cramp is one thing, but your period shouldn't be debilitating. Stand up for yourself, and get better. You deserve it.
It may be a long haul, but I will never stop fighting the battle against endometriosis. Even John McClane deserves a win eventually.