Story Written by a Survivor

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What’s the most frustrating part of Endometriosis? Share to show your support!

So many times I’ve wanted to film myself. To film myself, in the middle of a crisis, just to show people that this disease isn’t a joke.
So many times I’ve wanted to ask my partner, my sister or my friend to film me, just to give the world a glimpse of what it’s like to be a captive of this disease.
But it would have been inappropriate. Can you imagine yourself swimming in your vomit and telling your relatives: “Honey, go and get the camera right now!” Ha!

I could tell you about the day my sister stole my parent’s car and took me to the hospital without a driving license, got stuck in 2nd gear all the way uphill, made the engine yell and ran all the red lights, hoping that at some point police would escort us. No, no no.

I don’t know about you but my first menstruation didn’t feel like a celebration. It was an inner tsunami.

Pain and crises came along with the first blood flows. Vulnerability and dependence only became clear 20 years later, as I experienced my 255th period. (Yes, I did count.)
Three years ago, I was traveling with my girlfriend Marie in Alice Springs, Australia. After three weeks of work exchange, we wanted to find some volunteering jobs there and quickly got an appointment.

We’d hardly gotten into the office and I’m panicking because I can feel the crisis coming… Like a junkie trying to hide her addiction, I am desperately looking everywhere for my pills.
As I finally find them, with great embarrassment I ask the lady if she’d have something to eat. I then explain to the lady that I suffer from endometriosis and that 20years of a regular anti-inflammatory intake mean the pills now burn my stomach. To my great relief, she knows about it for her daughter’s girlfriend suffers from it too.

While I’m eating her crackers, she’s on the phone connecting us to a camp manager for a potential mission but I’m gone. It’s too late and I know it.

I should have taken my pills sooner! Like it was going to change anything… once the crisis strikes, your pills won’t help but I had no clue by then!

A few seconds later, a burning fire arises and devours my body from within. I am suffocating, yet I know that I’ll soon be shivering cold and freezing in that same body. I am about to throw up in the office, maybe on the desk, maybe on this nice lady’s feet. I want to poo and pee all together at the same time. Everything is about to come out. Unfairness, indignity, anger, frustration, and shame: all these emotions, too, are about to be thrown out there without my consent. Is this the twisted price I pay for not having been able to express what lies within? It is surely deeper than that.

Somehow, I manage to switch to survival mode, get up and storm out of the office as fast as a turtle would. I’m now painfully heading to the toilet. Marie is probably apologizing and justifying my urgent sortie. I’m feeling sorry for everything I put her through. But there is no room for lamentation right now, because right now what I need is to reach this freaking toilet! But why are the toilets in the garage?!! Why so far away?!! Why is it so dark in here?!!

I’m now in the toilet. I can’t control what comes out… but I haven’t vomited yet. The pain is reaching a level of intensity that I had never experienced before. The pain just punches you on the floor, cheek held tight on the dirty floor like a criminal caught by a policeman. It becomes a terrifying moment for me but also for the person who’s with me. Oh, I know what’s happening! My body must have been trapped in electric wires. Ok, I’m not only a captive, I’m also being tortured and receiving electric shocks throughout my whole body! Where is Marie? I need her to rescue me. I need someone to rescue me right now! I won’t tolerate any more pain.

She finally shows up in the toilet but she has to leave me again in that pit. She’s trying to organize my rescue, and right now she’s doing the best she can. I understand and I’m grateful but I’m freaking out here alone. I’m feeling abandoned. So I’m dying here alone in the darkness but I still need to feel a human presence, light, and life around me. I need to hang on to something. Oh, light! My vision is blurred, vertigo makes me stumble and bumps into the walls but I’m determined to reach the surface. An ultimate force beyond comprehension carries me back to the office, where I fall on my knees, holding my belly, bursting into tears. Finally, I’m throwing up! It comes as a relief despite the shock waves that violent spasms create. I can see Marie again in front of me. She tells me that our host and friend Derren is on his way to pick me up. She now has to clean after me and apologize to the office lady who probably didn’t expect such drama and mess in her work environment.

Another excruciating cycle of pain is hitting me again. I am freaking exhausted. It feels like I’m running the last kilometer of a marathon. It requires an enormous amount of energy to resist the pain and absorb the aftershock. The pain makes me beg God to help me faint. While I wonder how come I am still conscious, I can hear Marie saying: “I wish I could knock her out to stop her pain !”

Where is Derren? Why does it take him so long to get here? How long will I be able to resist this excruciating pain? How can a human possibly tolerate this pain? I’m now banging the wall I had been staring at for a while. “Help, help, help!” I’m hanging on to Marie’s presence, voice, and support. She keeps going back and forth from the office to see if Derren is arriving. I’m lucky to have her.

I can see someone’s legs and hear a man’s voice. I understand that Derren is here. He carries me to his car and puts me in the backseat. It is a big relief.
They take me to the hospital. Marie explains that I suffer from endometriosis and surprisingly they treat me right away. As they are about to inject me a dose Marie asks me for my credit card. By then only she knows that the treatment is 1079$ and I’m glad she only told me afterward!

I’m shivering cold although it’s 45degrees outside but feeling that I’m being taken care of has already eased the pain!

That was the beginning of a long healing journey. I flew back to Europe and started to take care of my health seriously as you can see in the video!

What’s the most frustrating part of Endometriosis? Share to show your support!





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