My name is Madelene and I am 39 years old. This is my story.
In November 2009 I was pregnant with my fourth child. The baby was expected to be born in early February. I had been feeling good throughout the pregnancy, except for the usual nausea in the beginning.
But then something began that would take years for the doctors figure out, and which felt like hell.
I had attacks with severe pains, vomiting and diarrhea. In addition to being pregnant, I was a mother with our then youngest son of 1 year. My partner (now husband) had a traveling job and was usually gone Monday to Thursday, sometimes Friday. The attacks lasted ½-1 day, around 3 times a week. Caring for a one-year-old at the same time was anything but easy. Luckily my mother-in-law was often able to come and help when it was at its worst. After a week, I sought medical help. The doctor thought stomach flu and did not want to listen to me at all. He sent me to hospital as it could be a danger to my child. But the child was feeling just fine and the doctors believed after a while that it was pregnancy sickness instead of stomach ilness. So in other words, it would disappear when the baby came.
My fourth son was born on January 24 and everything was peace and joy, or was it?
The attacks continued, so again I sought medical care. Again I met a doctor who did not listen to me. I had a gastroscopy and took some samples, but all was well. I can’t even remember what he said, but he did he listen to me…? No, unfortunately not. After several trips back and forth, I sought private care instead.
I saw a doctor who admittedly listened to me, but thought I had some horrible illness that would only get worse and worse and end with a colostomy bag. But he did something good.
He sent me to a doctor at Värnamo Hospital named Margareta Svensson. By the time I got to Margareta I had almost given up. I told her the whole story about how sick I was (like so many times before) and that I had ended up giving up. The first thing she said was «Madelene, I don’t understand how you have endured so long».
Then I knew that I had come to the right place.
Several years went by with various surveys and samples and although we did not get anywhere, Margareta was always there. She was someone who always listened to me. Finally, I was connected with a team from Linköping and I was diagnosed with CVS.
Just over 10 years after I became ill, I am still looking for something that can help me. Over the years, the symptoms have changed and I am bad for about a week when I get an attack. It comes in periodically and I have had time periods of over 6 months where I had no symptoms at all. Last year I was sick about once a month. I’m thankful that my husband, a year ago now, has a new job at home. I have an understanding workplace, which is worth gold. Our four children have now become six children. In November 2019 I received a new medicine (have tried lots) that I hope will help. I have not had a full attack since November and although I know I can have healthy streches of time, I hope it is the new medicine that is helping me.
CVS is a terrible disease that I do not wish on my worst enemy.
My biggest nightmare is that my children inherit the disease from me.
It would make me devastated.