endometriosis awareness.

The other night, while browsing through Thought Catalogue, I came across an all-too-familiar word in one of the headlines. Endometriosis. Clicking through to the article, my eyes started to well up with tears as I read line after line of painful truth. It was so relatable for me. Almost too relatable, in fact.

I found myself feeling embarrassed - like someone had published my most private experiences for everyone to read about. By the end of the post, I was split between comfort and heartbreak. Comfort in knowing that I'm not crazy and this struggle is really as hard as I feel like it is. And heartbreak in reading the pain someone else has gone through with no happy ending or resolution.

March is Endometriosis Awareness Month. And after struggling with my pain for 9 years, some doctor finally threw out the E word during a conversation and brought that possibility to the table. 9 years later we are looking at my symptoms, seeing how they line up perfectly to an endometriosis diagnosis, and scheduling a laparoscopy. This leads me to believe that there isn't nearly enough conversation about this disease. And after reading that article, I was inspired to step way out of my comfort zone and share a little bit of my experience. It isn't pretty or fun or positive. And I won't blame you if you don't want to read it. But if you do, I hope you read it with an open mind. And I hope that it enlightens you in some way and that maybe you will gain some understanding about this painful condition that millions of women suffer from, but nobody talks about.



I have chosen to insert a few of my own thoughts and experiences between the words that resonated with me the most from the anonymous article on Thought Catalogue. I'm pretty nervous about this, but here goes...

"I am trying to live a life with a debilitating illness that no one can see. An illness that has cost me, and many women like myself jobs, relationships, money, dignity, and strength. Some days I cannot physically get out of bed... I take the pills, but they don't help..."

I was in 7th grade when the doctor recommended that I try hormone treatments to control my abnormal symptoms. I remember sitting across from the assistant principle at my Junior High, with a plate full of brownies that my mother had made for her. A peace offering. We explained the situation to her and she gave me a little yellow pass to keep in my backpack and whenever I needed to step out of the classroom, I could show my teacher the yellow slip and go to sit in her office, curl up, and cry until the pain from cramping and nausea from the hormones had passed.

9 years later and I've tried them all. 9 different contraceptive pills, with more pills to combat their side effects, hormones, ibuprofen to "help the pain", specialists who send me to other specialists who send me to other specialists just so I can hear those same words over and over. "I'm not really sure what's wrong...." but how about we do some more bloodwork and I'll send you to the specialist down the hall.

Somewhere right after high school I fell into a depression - a side effect of one of the many medications I was on at the time. We took a break from prescription drugs and searching for answers to get my mental health stabilized. But the pain continued and eventually even worsened. So we found ourselves thrown back into the ring.

"I have been to the Emergency Room, screaming and crying and in so much pain that my body was contorted from the waist down, and doctors treat me like a drug seeker..." asking if I've taken Advil or suggesting 800 mg of Ibuprofen, after I tell them the progression of medications that I've taken over the years and how the only thing that we've found to even remotely control the pain is Percocet.

The Percocet makes me so nauseous that I can't keep down food or even lift my head after I take it. I hate it and the way it throws me back down once it wears off - but for a few short hours, I can lay still and sleep. So I take it. They don't trust me enough to give me anymore of it, though. And I have to ration the little bit that is left. "So I sit there and pop Advil, hoping it will take away the feeling that I can only imagine is similar to being shot in the stomach multiple times a day. The hormones give me migraines. I take Aspirin. The Aspirin and [Percocet] tear holes in my stomach" causing the following weeks to be full of pain and vomiting as well.

We keep detailed charts of when I take the pills. Columns for each different medication with times written underneath them. My mother comes into my room every 3 hours during the night to lift me up and give me more medicine because if we skip a dose by even a few minutes, the pain will rush back, overbearingly. I set my own alarm but I can't get myself up. I'm too groggy and confused from the drugs.

"My iron levels are low. I am always pale.... I have changed my diet, constantly following the trends on what is good for me to eat and bad for me to eat.." Most recently, giving up gluten in the hopes that it will minimize any of the pain or give me even the slightest improved chance to one day have children of my own.

Insurance refuses to cover the procedures that the doctors recommend. We pay for them out of pocket. They never work, anyway. Every day it becomes less and less likely that I will ever be able to conceive. Doctors constantly tell me to consider freezing my eggs, warning me of the risks if I don't and informing me of the struggles that I will likely have with miscarriages. People are accidentally getting pregnant all around me. I'm only twenty-two and I don't want to think about having children right now but it's being pushed at me from every direction. There are decisions to be made that will change my entire future and I'm not ready to make them. The word hysterectomy gets thrown around a lot too. I don't want to forfeit my chances to be a biological mother yet, but everyone on the outside makes it sound like it's an easy choice - It isn't that simple to me. I'm scared.

"Everything about this disease calls for sacrifice. I have to sacrifice my body to end my pain. But people don't understand this... They refuse to understand a disease that they cannot see..." Every time some well-intentioned woman tells me "Yeah, I get bad cramps too" as I silently hunch over in pain, I have to bite my lip. I know that I'm seen as a weak person who can't handle pain, when really I'm stronger than I'll ever get credit for. "There is a part of me that always feels less than everyone else. I am broken and I try hard to convince everyone that I am not. I very rarely open up about my disease to anyone, and even when I do, I spare the "gory" details. I spare the fact that a good 70% of my week consists of being wrapped up in bed with heating pads and... pill bottles while I cry and scream because I just don't know what else to do." I can't handle another uninformed person giving me advice or telling me to go through with the next surgery. They don't understand what a struggle these 9 years have been. And how many times I was told "this will work" only to find myself worse off in the end. To them, it looks like a quick fix. To me, it looks like quicksand.

"I fear. I hate when people tell me I can get over this, that things will get better, that I will feel better" if I try whatever they think is best. "I fear that I will never achieve what I want out of life because I will always be held back by pain." I am kept at home while my friends leave on cruises and my family gets on airplanes because over the years, it's become too risky for me to leave. I never know when the pain will rush back and it only takes a moment to become debilitating. So I sit and wait. I leave messages with surgery schedulers who are overbooked and won't call me back for more testing. I make appointments with more specialists who will tell me they don't know how to fix me. "I fear that this disease will continuously isolate me from my own life... I fear my interactions with people will continue to be tainted by perceptions that I am only pretending to be miserable for attention" or I could be better if I 'really wanted to be'. "I don't want sympathy... I want normalcy. I want to be someone whose life hasn't been wasted in the waiting rooms of doctor's offices and emergency rooms, on the couch or in bed watching TV. I fear that people will never take the time to understand and will forever ask... why I don't have children... why I came into work late, why I didn't come to work at all, why I get fired from every job, why I can't just get over it?"

I never want it to define me.
But it's a weight over me that I can't lift.
Every month, a week and a half of my life is stolen from me as I succumb to the pain.
These are my darkest moments, and I live the rest of my life in subconscious fear of when they will be back again.
It's never long.

Endometriosis UK  .  Endometriosis Team Facebook .  Resolve : National Infertility Association . 
Endometriosis Foundation of America .


I didn't write this to vent, complain, or be negative.

I wanted to share my experiences to start a conversation and an understanding 
between women who struggle with endometriosis and the people in their lives.

I just believe that all things happen for the good of something else. Even the negative things.
So maybe the good in my negative experiences will come from sharing my story and having at least one person learn from it or relate to it.

I know I was really moved by the article I read and it just made me feel less alone in this,
so I hoped to do the same for someone else.

I'll be back here with happier thoughts soon. :)
Thank you for reading.