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Van N., Adrenal Tumor

Before, During and After Cushing's

Before, During and After Cushing’s

I am a twenty four year-old female who had an adrenal tumor. My main symptoms were depression, anxiety, panic attacks, insomnia, acne, body hair, fatigue, joint pain, no menstrual cycle, and hair loss. I was a thin girl most of my teenage life, even though I was overweight as a child. When I was around eighteen years old, my periods became irregular and came every other month. I started growing body hair and facial hair that I would wax or shave. I started getting acne that I then controlled with acne medication. My stomach was always bloated though my limbs were thin. I always had round cheeks but I noticed they were getting bigger; I figured I was just aging even though I was only twenty.

When I turned twenty-one, I started to notice mental disturbances such as sadness, nervousness, bad memory and mood swings. Still, I blamed it on school-related stress and other external things. The symptoms worsened, and I started to feel depressed, anxiety, paranoia, and extreme moodiness. I would yo-yo between happiness and anger; sadness and anxiety and crying. My face was changing, like I was wearing a heavy mask. I saw the fatigue and tiredness in my eyes. My cheeks got so big that I could not smile. Still, I felt maybe my “good years” were over and ignored the signs. I noticed that when I saw a photo of myself, I could see the drastic change but the wakeup call was when people did not recognize me and family and friends shamed me for being fat and pimply. I was so depressed and felt like my life was over. Nobody understood me. While everyone else my age got to be young, have fun and enjoy life, I was miserable and falling apart. I felt like a monster inside and out. I began having suicidal thoughts and wished I would sleep forever instead of living in this nightmare.

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With Cushing’s and After Cushing’s

I went to see doctors but I was not overweight enough for them to be concerned that something was wrong. They figured I was just a slightly fluffy, pimply young adult. By the time I turned twenty four, my period stopped for an entire year. My skin got so bad that I would cry when I washed my face because not one space on my face was clear. It was full of deep cysts and boils that would burst when I washed my face. I felt so ugly and felt like there was no way I could bounce back from this. I felt like I hated everyone and myself. Finally, my last attempt of ending my life caused my loved ones to find an endocrinologist. My endocrinologist was not sure what was going on with me since I didn’t look “cushingoid” enough. But months of tests and scans later, it confirmed that I had Cushing’s Syndrome and had a tumor of the adrenal gland. During all that time, I did not know if I had the will to be strong enough to make it to the next day but the answer was a bittersweet feeling of validation. I remember the stupid comment someone made that “Asians don’t get tumors.” So what am I? Did I give it to myself? No, it is a very rare condition. The way I got through it was to take it one day at a time. I waited for the day until I had the surgery.

When that day finally arrived, I was excited to get this ugly tumor out of my body. After the adrenalectomy, I thought I would feel better but I felt so much worse and I looked even more bloated and pimply. I was so mad that after everything, I was not getting better. I literally counted the days until I finally got my first period– five months after surgery. Suddenly I started losing a little weight, maybe 2-3 pounds per month. My skin stopped producing as much oil and my pimples started shrinking. I started to see my cheekbones and collarbones again. I was so happy. After eight months in recovery, I was down to the weight I was at fifteen years old. My skin is clearing up and my hair is growing back. The anxiety is getting better and the depression is improving. I am on antidepressants and they help to counteract the adrenal insufficiency I live with every day. I am not fully recovered yet so I still take 15mg of Cortef. I am so glad that I stuck through the darkest times and I am so proud of each and every one of these patients here. We need to continue raising awareness and helping out other people who are going through this, too. I used to wonder why I suffered through all of this but I now realize this experience taught me patience, self-love, and strength that I can now pass on to people who are currently going through what I survived. Thank you for this website and thank you for reading my story. God bless!

Member: 142257
Newsletter: Spring, 2014
State: Texas

Sandra B., Pituitary Transsphenoidal Surgery, Recurrence, Radiation

I was incorrectly diagnosed for many years, but almost 20 years from my 1st pituitary surgery of 3, pituitary radiation, follicular lymphoma, chemotherapy and radiation to the duodenum, I am happy to report that I am finally better than I have been in years. The journey has not been easy or predictable; however,Continue Reading

Eugene F., Transsphenoidal Pituitary Surgery

There is interest in the CSRF on recovering from the Cushing’s experience. Each of us is unique in these experiences but they are very much similar. In my early sixties after a lifetime of good health I began having many symptoms familiar to all of you.Continue Reading

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