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Kayla's Story

Hi my name is Kayla I am 19 years old and I got diagnose with Cushing’s 4 months ago. I am probably one of the more lucky ones being younger and the fact that I have only probably had it for about 2 years. I started to gain weight during my senior year in high school. I didn't understand why it was happening at all. I played 3 sports (Varsity Volleyball, Varsity Boys Ice hockey and Varsity Softball). I am 5'2 and I weighed about 105 and a size 0 pants. I was only a little thing. Two and a half years later I am almost 185. My family kept telling me to stop eating fast food and junk all the time. So I did. After 6 months Jan to June I went to the gym 5 days a week plus my sports went on a strict no fast food no junk, salads and chicken only and i gain 35 lbs. But I was gaining it in a very odd way. I was only gaining it in my stomach area. Which a year into made me look pregnant. This at being 19 and in a very serious relationship (more then 3 years now) didn’t go down very well with the family. I knew i wasn't pregnant I had lost all erg for that about a year and half ago. But at 19 and your boyfriend being 22 how many people are going to believe you. Well throughout the months my face started to gain weight. Over about a 6 month time frame my face was completely round and had a reddish tint to it. My skin also started to change colors. I was getting dark spots on my neck. My knuckles were darker then the rest of my hands. After doing the whole gym thing and dieting and getting no where I started looking for other answers. I went to a OBGYN and they ran some test like thyroid and everything came back normal. This was back iin Jan 2006. They had also ran some hormone test which also came back normal except for one my level was high. I had told them that I was getting more hair on my face then usual but they didn't think it was high enough for that.

A few months later I had gotten a cold. I went to my primary care doctor to take care of it and she said she had received my results from the test they had done and suggested I got see an endocrinologist. So I went through my insurance book and found a local one but could not get into see him for another 3 months. (June1) A few more months went by, by that time I had gain about 20 more pounds and started getting purple colored stretch marks on my stomach and inside if my thighs. When I got to the doctors that day he saw the marks and pin pointed me. He ran more test. All my levels including my cortisol levels were sky high. The one test that came back normal was the MRI I had went for. It came back showing nothing. Which means the tumor on my pituitary gland wasn’t big enough for them to see. I underwent another test called the petrosal sinus sampling and that proved that I had tumors on the left side of my pituitary gland.

He immediately sent me to a Nero surgeon, (Dr. Swearingen) at Boston Massachusetts General Hospital which is only about 45 minutes from where I live. He happens to be one of the best for this type of surgery. After going to see him he sent me for another MRI and Cat scan. And in another MRI he said he could see something. Two weeks later (Sept,6,2006) I went in for Transsphenoidal Sugery. It’s been 3 weeks now and I am still having some problems. It took me 3 years to get the effects from the disease so I cannot expect to get rid of them over night. I woke up from surgery with my nose packed but feeling ok, besides for a headache on one side of my head. My throat hurt a little from the breathing tube. But other then that is wasn’t that bad. They took me to my room and the next day they took of the packing out and I was released.

Right now I don’t feel too bad I am getting around just fine. I still have the headaches. I get mood swings often(but I had those before the surgery too), right now I am going to my doctor for something for depression cause my homormone levels have changed so fast my body really don’t know what to do. I cry for no reason or really easy. I lash out on people really quickly. I don’t mean to but I do. I am so still uncomfortable with myself that I take it out on other people. I don’t even want to leave the house anymore. Before the surgery they told my the first month is the hardest. I guess you kinda hate the world at this point and right now I do. But I am getting through it I will beat this. I only 19 (20 in December) And have a lot planned for the future. I am just glad I found it this soon. I think that if I hadn’t received the purple stretch marks it wouldn’t have been that easy. I had just started to get them 2 months before I went to see the doctor. I am just glad that it is over and now all I have to work to get back to normal. I know I will never be the 100 pounds that I was but I am going to hit the 120 column again.

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