I was diagnosed at the end of September, 2013. My tumor (pituitary) was removed on October 7th. I was only 18 years old, but my doctors tell me that I’ve had this for a while. My tumor was about the size of a large marble, and it was aggressive (Crookes cell adenoma). I have to have extra MRIs done about every three months.
It all started around 9th grade. I started gaining a ton of weight for no apparent reason. I went to see many different doctors for this. They all said the same thing, “write a food journal, you must be overeating.” I got really tired of them telling me that I was just fat. I knew with every fiber of my being that there was something extremely wrong. Then I started growing the unwanted facial hair. I had stretch marks all over my body, and they were so deep. They looked like someone tried to carve into me with a pumpkin carver and were a purplish blue color. I’ve never had a super normal period, but I got really scared when I had one that lasted for two months. I decided to join Weight Watchers with my mom, who is 40. In the time she lost 50 pounds, I only lost 12.
One day we were moving things around in the living room so we could paint the walls. The next day I woke up and my right leg and foot were very swollen. I took some over the counter water pills and that seemed to work for about a week. Then I woke with all extremities swollen to the point that it was painful to move. I went to see my family doctor and she immediately sent me to the ER. They thought there must be something wrong with either my heart or my kidneys. My blood pressure was through the roof at 177/112. I was also having terrible headaches and I was breaking out terribly on my face, chest, and back. I put these things to the fact that I had just graduated from high school and my life was about to change.
After a few tests, they decided that I might have poly cystic ovarian syndrome because the symptoms of PCOS and Cushing’s are very similar. Of course extra testing needed to be done, so they sent me home with blood pressure meds. About a week later I had another appointment with my family doctor as a follow up. I was still swollen as ever and the blood pressure meds weren’t really working all that well. She called the hospital and told them to reserve a room for me. They did many tests. The ultrasound on my ovaries came back normal, the ultrasound on my kidneys came back normal, and the CAT scan they did on my head didn’t show anything. I was in the hospital for a week. They gave me better blood pressure meds and I got in touch with an amazing endocrinologist. He wanted to do an MRI as an outpatient, but I wasn’t going to get to see him again for about another 6 weeks. I went home but about two days later I woke up with the worst headache I’ve ever had. My mom decided to take me back to the ER and that’s when they decided to do the MRI. That’s when they found the tumor.
I was admitted back into the hospital for another week while I had more testing done. The tumor was sitting on my optic nerve, which is what was causing the headaches. I only got to go home for a few days before surgery because I had to go get my eyes tested and the hospital didn’t have the equipment there. The news that I had a brain tumor never really sunk in. It was like I was watching my life as a movie if that makes sense. It’s not something that you’d ever expect to happen to you.
A couple of months after surgery I started having a lot of abdominal pain. I found out that I had multiple gallstones. I had surgery to get rid of my gallbladder just two months after my brain surgery. I feel like I’m falling apart, and it’s not helping my depression at all. I’ve lost almost 100 pounds since my tumor was removed. My top weight was about 319. I’ve still got a long way to go, but one day I’ll be okay (hopefully). I had to drop my college classes. I was studying histology, but now I’m going to study endocrinology. I try to look at this whole thing as a positively as I can. Like this happened to me for a reason, etc. So far, helping others has helped me a lot. I know that I got through all of this because I didn’t allow myself to become a victim. I have more appreciation for things that I took for granted before.
I was so glad I found the CSRF at the recent Endo Conference. My mom and I attended because my endocrinologist had a poster on my case during the poster sessions. I’m really looking forward to hearing from others who had Cushing’s when they were my age.
Newsletter: Summer, 2014