March is an endometriosis awareness month. Women fighting with this horrible disease go out to the streets. And they’re marching, fighting for a better tomorrow. It seems absurd, because why does one have to fight for a proper diagnosis? Unfortunately, with this illness, women are notoriously ignored. I will tell you my story. I can’t recall when this started exactly, but I remember precisely that when this first time happened, I literally begged my parents to end my suffering right this moment. I was a teen. It’s the kind of pain that makes you throw up, faint, you’re not able to speak, you lose contact with reality. You are not able to move. I also remember my parents, how scared they were whenever they were not able to bring me back after passing out. I was not scared at this point, I just prayed for it all to end, whatever it would mean. I didn’t think it was the beginning of hell and my biggest nightmare. The same attack started again a while later. On ER they suspected drugs because of the convulsions (maybe I should point out now that I’ve never had contact with drugs tho), another time they said I’m faking because they weren’t able to figure out what’s going on. For 10 years no one could diagnose and help me. I kept hearing that I’m exaggerating. Menstruation hurts a bit, and a princess is dying.
But it was such an excruciating pain that doesn’t let you function properly (I’ve always heard in the back of my head – “what if it’ll start soon?” I have always needed a backup plan, someone close, someone on speed dial).
One time I’ve passed out on the street, luckily it was 1 block from home, I’ve managed to call dad and say three words ( three in polish) – “help, in front of the house.” They’ve been running around and looking for me out there, and I can just imagine what they felt back then. I remember how my mom has spent a whole night on the ground next to my bed (even though I was almost 18) and gave me enormous support and kind of “relief.” I remember how two paramedics above me been talking about emergency action because they were “losing” me. And I can’t even remember the ambulance trips since I was never conscious.
I remember one time when I’ve provided everyone with “not-s-great” Christmas Eve in the hospital.
Endometriosis paralyzes the life of a person that’s ill, but also her close ones. No one believed me for many years, doctors ignored and belittled me. Even though my family vouched for me, I’ve heard plenty of theories about imaginary pain, because doctors thought it’s all in my head. And the worst part is, at some point, even I started to believe them. “Maybe there’s really something not right with me?” But I’ve passed that test also, another lack of diagnosis.
All this has made me anxious, I was scared to travel, to be alone, I was always worried that something will go wrong.
When I was finally diagnosed, I was told that I won’t be able to have kids, ever. Endometriosis, thyroid, not a chance. And I’m writing this with my daughter sleeping right next to me.
Even though my nightmare is not over yet, I at least know what’s wrong. And I just pray that nothing happens as long as I’m breastfeeding since it would be rather complicated to overlap breastfeeding and being on morphine.
I’ve recently seen the movie “Brain on Fire” – and probably that motivated me to write all this. Because if this story could help at least one woman to get a proper diagnosis, then it’s worth opening up.