My wonderfully horrible inheritance
“ I remember that when I was young, I was looking forward to my first period. After all, all the other girls’ periods had already started. Now that I think about it after all these years, I wish the whole period hell never started.”
"Despite my horrible heritage, I have been lucky to have found peer support close by; my own mother and younger sister also have endometriosis."
I remember when I was young, I was looking forward to my first period. After all, all the other girls had already started theirs. Now that I think about it after all these years, I wish the whole period hell never started.
My first stomach pains started even before my period. Because I hadn't had my period yet, no one even thought the pain could have had something to do with my period. I only realised later that my stomach pains at the time were probably hormone-related. When my period finally started at 16, it was often very painful and I had to miss school. I did have the courage to tell my PE teacher during my period that I couldn't go to the swimming pool, because I had noticed other girls doing it too. Before my period, my stomach was all messed up and it hurt a lot. The pains were intermittent, and my periods were also very irregular and heavy. My mother soon caught me skipping school during my period, which is when she brought up endometriosis, and that's when I first learned about this hereditary illness that runs in my family.
My menstrual pain was treated hormonally with birth control pills. I was still a virgin at the time, so I always had to explain to my friends why I was taking birth control pills when I wasn't having sex. When, on the threshold of adulthood, I dared to try sex for the first time, I had to admit that it wouldn't work out because I was hurting so much. It gave me the creeps, and it took a long time before I dared to let anyone near me. And when I finally dared, it turned out that it wasn’t just the first time that was painful: the endometriosis had decided to make horizontal dancing painful in the future, too. Fortunately, with only one exception, my partners have been very understanding.
In working life, my constant bathroom breaks have not always been fully understood. Sometimes, I have also encountered people who have looked at me funny or belittled me when I have tried to explain that I can’t participate because of my menstrual pains. I’ve often been asked why I don’t just take painkillers. When I was younger, I tried to hide my pain from people, but later, I have found the courage to talk about it more openly. For example, I might tell people that what they don’t experience themselves can be difficult to understand.
Despite my horrible heritage, I have been lucky to have found peer support close by: my own mother and younger sister also have endometriosis. I also have a couple of friends with endometriosis, and we have talked about it. I only recently discovered the activities of the patient organisation Korento, and I have never felt that peer support groups were my thing. However, I am happy to act as a support person or a shoulder for others who are struggling. It’s not worth staying alone with your illness – there are others of us who are struggling with the same thing! And don’t be discouraged if endometriosis makes it difficult to have children, because little miracles are born all the time. My sister, for example, was told that having children might not be possible for her, but she is now the mother of a healthy 5-year-old girl. Oh, and our mother has endometriosis and four children.
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