I have a chronic pain condition. Most people don’t know about it, because I honestly put on a good façade. Yet, there are still days that I can’t hide the pain. It’s a pain that is indescribable and one that will never go away.
On November 19, 2015, I was diagnosed with Endometriosis. It’s a disease that most people have never heard of, even though it impacts 1 in 10 women. Part of the reason that no one has heard of it, is the stigma around women’s health and gynecological issues. It’s risqué to talk about things like periods in public, even though it shouldn’t be.
For those of you that don’t know what Endometriosis, or Endo, is here’s a quick summary of the disease. Endometrial tissue normally grows in the uterus and is shed during a woman’s period. It’s a natural thing, what isn’t natural is for it to grow outside of the uterus, which is what occurs when a woman has Endo. When endometrial tissue grows outside the uterus, it can’t shed.
The technical term is Endo lesions. The best way it has been described to be is as little vines that grow off of the reproductive organs and attach to others tissue in the body, normally other internal organs. On bad days, the lesions shift, pulling at organs and causing immense pain. I can be having a conversation with someone, with absolutely no pain. Thirty seconds later I can be doubled over, practically passing out from the pain.
I personally tend to experience flare-ups whenever my hormones spike, so around ovulation and my period but it isn’t contained to those times. It can happen anytime and anywhere, often with little or no warning. It makes living your life really hard, especially when no one believes in your pain.
On average it takes between 7 and 10 years to get a diagnosis of Endo because so many doctors are unaware of the symptoms. During those years of waiting, everyone around you begins to question you. How was I supposed to explain to my high school friends that when I had my period, it wasn’t just PMS that I was dealing with? I was in immense pain, that made going to school impossible. I would literally be curled up in the fetal position, unable to function for at least the first day of every period during my high school career.
While my friends would never have said anything, I think they all thought I was crazy. People I looked up to would tell me to take some Advil, do some yoga and that it was normal. Everyone had painful periods. With everyone telling you that the pain isn’t real, that it isn’t as bad as you think, you start to believe them. It gets harder and harder to explain to people why you are constantly canceling plans and missing out on things. Eventually, you just stop trying to explain.
Getting a diagnosis can also only occur through physically seeing the lesions, which means surgery. In my case, it meant exploratory surgery. I was only 17. How my doctor managed to get insurance to cover that exploratory surgery, I don’t know, but I am so thankful that she did.
There is no cure and there is no treatment. Even once they find lesions, there isn’t much that modern medicine can do. There are drugs, but none that stop the disease. At best they slow down the progression, at worst, there can be permanent side effects.
So, how do you deal with it?
I haven’t figured that out yet. Every time that I feel like I have figured out ways to manage my pain and I’m doing better, something changes, and I have to start from square one. I wish I could put it more elegantly, but it sucks. There is a sense of hopelessness that accompanies the disease. You question what your quality of life is going to be like if you will ever not be in pain.
Don’t get me wrong, I have a lot of good days. Right now, I am on an upward swing, but there is always that fear that it won’t last long. Who knows, maybe it will or maybe it won’t.
March is Endometriosis Awareness Month. You will be able to find me sporting a yellow ribbon in support of all my fellow Endo Warriors who fight for a cure every day of their lives. Part of my fighting process is educating people about it which means sharing my story.
My story spans 9 years already which is insane. I’m only 21, and yet Endo has been a part of my life for almost half of my life.
Each week I will write about a different part of my story, starting way back in seventh grade with little 12-year-old Samantha. There have been highs and lows and I’m willing to share it all. Maybe, just maybe, I can make someone feel like they aren’t alone… like they aren’t crazy. Hopefully, you stick around to read the rest of my story.
If you are suffering from Endo or know someone who is, just remember that you are not alone. There is a whole community of us who are waiting out there, ready to welcome you with open arms. I’d like to tell you that it gets easier, and in some ways it does. That doesn’t mean that it will ever be easy though. No matter what, keep your head up and trust yourself. No one knows your body better than you do. If you think something is wrong, be your own advocate. If you get an answer you don’t like, get a second opinion, and a third if you need to. Never stop fighting for yourself.
MRC