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Fight for good care

“ I'm Jenni, a 27-year-old battling endometriosis. I've had stomach problems all my life, more or less. Until my twenties, the stomach problems didn't really limit my life. ”

"I've battled endometriosis with all the might in this little, blonde machine, and I have never given up!"

I'm Jenni, a 27-year-old battling endometriosis. I've had stomach problems all my life, more or less. Until my twenties, my stomach problems didn't really limit my life. My period was really painful, but I thought it was normal, and at that point, I had no idea of what the worst pain could be like. My first contact with the worst pain came when we were speeding to the hospital, and in the car, I was thinking that I must be close to dying because I hadn’t known that so much pain was even possible. The cause was not determined at the time, nor for years to come. Year after year, I went through the celiac and lactose tolerance tests again, when no one could figure out what was wrong with me. By chance, I got the first estimate of the possibility of endometriosis when I was referred for further tests because of a suspected tumour. After that, with the right hormonal medication, I lived a relatively normal life until the age of 25, when my symptoms got much worse.

Crazy, a hypochondriac, depressed – those were my diagnoses for a very long time, and unfortunately, they often still are. After eight years of suffering from endometriosis, I still have no official diagnosis of endometriosis, only a "strong suspicion". At times, I have started to believe that maybe these problems really are in my head, because I hear it everywhere. The main reason why the doctors couldn't believe my medical condition was that I didn't look sick. I've battled endometriosis with all the might in this little, blonde machine, and I have never given up. The doctors would look me up and down and say that I’m a healthy-looking young woman who can't be as sick as she claims to be. I have not wanted to look sick, either, and that is part of the reason why my poor health has been so grossly underestimated.

I would like to encourage everyone with endometriosis to fight for good treatment. The other endometriosis fighters I have met are strong young women who have faced similar suspicions when they visit the doctor. I want to inspire others so that we can put our foot down and make people realise how sick a person can be even if it doesn't show on the outside.

For a long time, I have wanted to keep up a facade so that my disease is not visible to the outside world. Many people in my circle don't know how sick I really am these days, and this has brought me into many awkward situations. I still have a long way to go with learning to say out loud that I’m in pain. Sometimes when I'm talking to people and there's cold sweat running down my spine, I wish I could say out loud that I really feel like screaming and crying on the floor. I've missed many situations and events because I haven't had the energy to go into a difficult situation with my pain. Unfortunately, I've also lost many friends and acquaintances because of my disease, but it wasn't the disease's fault, it was my own. I haven't been able or willing to tell people how, when the door closes after a day's work, I often collapse in pain on the shower floor, hoping for a better tomorrow. What has been particularly difficult with this illness is to define my personal limit for physical pain and mental endurance.

Despite the pain, I have tried to stick to the things that are important to me. For me, it's an army of one dog, one man and one mother that has fought with me. The fact that my life has been relatively normal for several years, despite my illness, and even in times of severe pain, is entirely and solely thanks to my mother. Together, we have kicked this disease in the butt, and my mother has never questioned how sick I am. He has also always given me hope when I sometimes lacked it myself. It is incredibly powerful when someone takes your hand and says, "We're going to beat this together.” Endometriosis has taught me a lot about pain, anguish, and despair, but also about love, struggle, and survival. It has taught me about loyalty, which I have witnessed in my own small army, as I have watched as one member of the army has pressed his furry snout into my lap, another has run to the store for pain-alleviating chocolate, and one has sought out available doctor's appointments. Endometriosis has also shown me love in its most stripped-down form, when I have seen my partner's loving gaze and outstretched hand, when I myself have been at my worst in pain, which has sometimes taken me to the breaking point.

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