The story of Frida

I got my diagnosis this summer, on the 10th of July. First day of my summer vacation 2023. The same day me and my family were heading to Lofoten, in the north of Norway. Located almost 10 hours away from our hometown in the northern of Sweden. Even if I almost knew that I had Cushings syndrome, caused by tumors in the adrenal gland, it was and still are a trauma that it has been established. Every test during the last six months had suggested that I suffered from this rare and severe disease. But this day was the day that the doctors finally set a label on me. It was the first step towards surgery, recovery and hopefully a remission.

Cushings syndrome is a rare disease and a pituitary adenoma is the most common cause of the syndrome. If the syndrome is caused by a pituitary adenoma it is called Cushings disease. The cause of the syndrome that I suffer from, tumors in the adrenal glands, affects about 3-6 people per million every year. I have two tumors at my left adrenal gland. Among other things, the tumors cause excessive production of cortisol, an important glucocorticoid hormone.
The syndrome is difficult to diagnose because the early symptoms overlap with those of other, more common conditions. Symptoms such as weight gain and tiredness. Therefore, it often takes a long time before a diagnosis is made, often several years. In my case the doctors had detected an incident adenoma in 2015, but no one ever told me. Maybe my life would look different now if they had alerted me this information. Maybe I have had the diagnosis earlier and had escaped a great deal of suffering.

In addition to being extremely tired all the time, I suffer from weak muscles (myopathy), backache and easy bruising. I also have thin arms and legs, even though I work out at the gym four times a week. During the last month my muscles have reduced so much that I barely can walk the stairs. My gluteal muscles have reduced so much that I cannot sit without causing pain to my coccyx and spine.
I have increased fat around the base of my neck, a fatty hump between my shoulders, fat pads above the collarbones and excessive fat around my abdomen. I have a round face (moon face) since about year 2020. When I meet someone that I haven’t seen for a long time they tell me that I look different and they hardly recognize me.. A colleague congratulated me on my new pregnancy (I am not pregnant). My skin is so thin and my full face looks so puffy. I had a cessation of my menstruation three years ago. I suffer from mental changes, anxiety, depressions, and bad memory. I have high blood pressure that has been very difficult to control with medications. In summary it feels like I live in an old woman’s body.

Although I searched for help for several years, the doctors dismissed me and told me it was psychological. They also told me that I was probably in menopause – at the age of 39. They said that my full face probably was because of me getting older. One of the doctors even told me that I had a fat belly and suggested me to do something about it. A round, red and full face and excessive fat around the abdomen is common symptoms of Cushing’s syndrome such as a cessation of menstruation. Considering all my symptoms I really think that the doctors should have reacted and done some tests on me, but no one did. Probably because Cushing’s syndrome is so rare.
I feel like I’ve missed my thirties. The tumors have affected my health and the quality of life for so many years. Sometimes I feel like the tumors stole my life. Cushing’s definitely stole my femininity and my womanhood, because it took my hair, my figure, my fertility, my face, my skin and my mind. But I have come to sense that it is okay to grief, it isn’t vain or shallow to miss those things.

Now I am really looking forward to a surgical removal of the gland and the tumors. After that glucocorticoid replacement therapy is required until the other adrenal gland recovers. They say that glucocorticoid therapy may be required 9 to 12 months. They say maybe I will be fully recovered, maybe not. Some of the symptoms may never disappear. Because Cushing’s syndrome caused by a adrenal tumor is so rare, there aren’t many statistics to rely on. Some say that patients with adrenal adenoma who undergo surgery have an excellent prognosis. There also are studies suggesting that there is an early worsening of myopathy after a successful adrenal tumor resection, and that the recovery thereafter only is partial. Time will tell how the diagnosis will affect my life in the long term.

Clearly Cushings Syndrome has affected and will keep on affecting me psychologically. I am really anxious about my health. In the past three years I have been almost obsessesed with my health. All the time I knew that something was wrong. I really felt it. But when no one listened to me I thought that maybe I could fix it myself. I have regulated my food and nutritional intake as well as exercise down to the smallest detail. I have chastened my body. I really have put so much pressure on myself. Despite all my efforts, my cheeks remained swollen. My muscles have reduced and my blood pressure are still high. On top of that I never got my period back. Finally I know why. I am sick – I have tumors on my adrenal gland. The excessive production of cortisol from the tumors causes Cushing’s syndrome, and someone has to remove them. And that I certainly can not do by myself.

Back to Lofoten. It is an absolutely wonderful place. It has it all – high, beautiful mountains, a fantastic fauna, cliffs facing the sea and clean air. It is a muse for the eye and I am so grateful for everything I get to experience. We stayed for four days and it was magical. I really try to focus on all the good things that I have in my life. Every new day I get to experience is a gift that I really cherish. I love life, that’s why I’m trying so convulsively to hold on to it. I am afraid to lose it.
Contractionary to this I pray every day that someday I will get the possibility to live somewhat like I did before my adrenal tumors took over my body. I want to wake up from this nightmare. I grieve the things that I am missing out because of this condition. I am so, so tired and my body hurts so much after every physical effort. Every time I look in the mirror the woman looking back at me does not look like me. I barely recognize myself. I pray for strength every day. One year from now things are going to be different. I have to believe that one year from now my health will be in a better place. I have to take it day by day and believe that I will get better. Always remember, life is change.