The Endo Challenge was created by a group of women who suffer from Endometriosis to raise awareness for this fairly unfamiliar but common disease. 1 in 10 women have it - but we don't talk about it.
And that's why I'm sharing my story. For those women, for the women who have it but don't know it, and for the women who feel like they are the only ones who are suffering from it.
To start off, I'm not going to write a long, technical explanation of what Endometriosis is. I hope you will take the time to read this great, short (just 3 paragraphs) explanation of Endo, written by one of the women in the Endo Challenge.
I don't remember how old I was when the pain started. 12? 13?
Cursed with bad cramps. That's what I thought it was. That's what everyone told me. There was nothing I could do, so I just had to suffer through it.
I missed a lot of school over the years. Work was harder to skip, but I'd smuggle in my heating pad and try to get through the day, gritting my teeth and praying for the pain medicine to work, eyeing the clock and wishing it would move faster.
I remember playing in a tennis match in high school, wanting to scream from the pain, but forcing myself to fight through it.
So many times I'd lie on my bed, tears streaming down my face. My mom would come in and rub my legs, trying to relieve the pain.
I never knew when it was going to happen. I never went anywhere without my heating pad.
It was always awkward at school to tell people where I had been. I often just said I was sick because it was easier than explaining the whole situation. And I was embarrassed. Sometimes if I told people about the pain, they thought I was making it up. So instead, I let them think I just got sick all the time.
When I was 26 (yeah, that's more than ten years of this craziness!), my gall bladder decided to stop working (unrelated issue). I had surgery to have it removed. I was at my parents' house recovering when my mom sat down on the couch next to me.
"There's something I have to tell you." she said. "When the surgeon was doing your laparoscopy, he found something."
Nothing like freaking someone out when they've just had abdominal surgery!
My mom went on to tell me that I had endometriosis. My surgeon knew that the only way to know for sure if someone has it is to do a laparoscopy. So when he does this surgery on women, he always checks for endometriosis.
My emotions were rather mixed. I was a law student at the time and we had just been studying how doctors only have consent to do exactly what type of surgery they are supposed to be doing. So part of me was yelling, what? He went poking around in my body when I did NOT give him consent? Not cool! It was also kind of weird that they told my mother instead of talking to me.
But the other (much larger) part of me felt relief. That's right folks. I was just told that I have an incurable, chronic, painful disease and I felt relief.
I wasn't crazy. I wasn't just completely wimpy when it came to pain. My problem had a name, I had an official diagnosis, and now we could start to manage it.
I met with my doctor and he put me on a form of birth control to regulate my cycle and to hopefully reduce the endo and the pain. It caused some problems at first - making me extremely nauseated - but we finally found a dosage that seemed to cause little to no side effects, as long as I take it with food. If I switch the dose or even use a generic version, it doesn't work. If I use medicine that is a little old, it doesn't work.
For now, I am one of the lucky ones. Right now, it's manageable. My pain was cut in half by the hormone treatment. But what does that look like?
It means I take less pain medication than before. It means that I can force myself to go to work, armed with my heating pad, instead of taking sick days every month. It means I can manage to survive my dance lesson before going home and gluing myself to the couch.
But it's not a cure. I've been on treatment for five years. If I stop taking the hormones my flare ups will be worse. I still have to take ridiculous amounts of pain medication, just less than I used to take. Not so long ago, I was on the verge of an ulcer from the meds, so I had to start taking another medication to protect my stomach. Meds for my pain and meds for my meds. Now I have to be extra careful to eat enough food when I take the medication.
But the pain medicine makes me feel sick, so I don't feel like eating. And so I avoid taking the pain meds for as long as possible, but then the strong pain comes back and I wish I had taken it earlier.
I still bring a blanket or a sweater into work to cover my heating pad. We don't get a lot of foot traffic in my office, but one day in the summer, an older man came in. He made a remark about how it was so warm outside and here I was with a blanket! Hah hah, awkward laugh. I'm sure my face turned red.
It would be nice if I could say "I have Endometriosis" and people knew what it was. Like saying, I have cancer or I have diabetes.
Will you help? Will you learn just a little bit about this disease that affects over 8.5 million women in the US? Will you turn your profile picture yellow for the month of March to help us spread awareness?
I know there are a lot of causes out there to support. But I hope that you will take five minutes to become a little more educated about this and hopefully take the Endo Challenge (www.endochallenge.com).