And It's About Time There Was Some Support For Cushing's!
My story begins in 1997. I was 21 years old and had to have surgery to remove endometrial cysts. At the time I was a healthy, normal young woman. My severe endometriosis was the only brush with poor health I had ever had. I am 5'5" and at the time I weighed 120 pounds. One month after surgery I was advised to have a depot lupron injections to help my body recover fromt eh surgery and to ward off more endometriosis. I was given a shot that was supposed to last for 3 months. Within one week I started piling on the weight. I gained 45 pounds in 2 months without changing anything about my lifestyle. I was horrified and went to the OB/GYN and he told me that I must be eating more than I thought. He put me on an 800 calorie a day diet. I followed the diet for 2 weeks and went back to weigh in, and I had gained 8 pounds. Of course the doctore thought I had cheated on the diet, and I was completely confused.
Along with the weight gain came overwhelming exhaustion. I remember one instance in particular when I was walking to an afternoon lecture (I was getting my bachelor's degree at the time) and I was so exhausted that I just laid down on the lawn. . . and woke up 3 hours later. I was really worried about that so I went to my GP who eventually diagnosed Chronic Fatigue Syndrome.
I went back for my second lupron injection (Don't ask me why I thought that was a good idea!)and had more of the same results. I was reassured by the OB/GYN that I just needed to get back to my normal routine and all the weeight would come off. However, six months after my surgery I weighed 195 lbs. I would run into people I hadn't seen in a while and they would all do a double take. I felt like an inflatable raft. I had to buy new clothes every couple of weeks because nothing fit. My breasts became pendulous.
I went to doctor after doctor who told me that I needed to eat less and exercise more. I had my thyroid checked repeatedly. I was tested for Polycystic Ovarian Syndrome multiple times. Nothing showed up. My abdomen had huge purple and red stretch marks all over it. I slept 12-14 hours at a time. My hair was thinning. No one seemed to have any idea what was wrong, and most doctors assumed that I was just fat and wanted to blame something for it.
My husband began chiropractic school in 1999. His first semester he came home and first mentioned Cushing's. He said, "I think you might have this weird disease." He had seen pictures of stretch marks in his text book and saw the similarities between my stomach and the example in the book. I didn't give it too much though at the time.
In 2000 I became pregnant with my oldest son. All of a sudden I began to lose weight. I wasn't trying to, in fact I was eating more than usual, but by the end of my pregnancy I was down 35 pounds! I thought, "I am finally fixed!" However, the joy was short lived because even though I breastfed exclusively for 16 months I gained all the weight back plus another 10 pounds.
I went to see an endocrinologist when I weaned my son. After doing 3 UFCs that were in normal range, I was told that I just needed to go to bed earlier.
I got pregnant with my second son in 2003. This time I lost 45 pounds during my pregnancy. I have gained it all back plu 20 pounds.
I went to the local expert on Cushings who after finding normal results on 3 more UFCs referred me to a weight loss clinic.
I am currently 242 pounds. My breasts are a size HH. I look 6 months pregnant. I have constant back pain. My joints hurt when I go up and down stairs. I have dark patches of skin on the back of my neck. My knuckles always look dirty. I ahve trouble concentrating. I could take a 2-3 hour nap every day. I smell bad even after taking a shower. I have skin tags on my neck and under my arms. I have tried every diet under the sun and haven't lost any weight.
I think that it is much more likely that one disease is causing all these problems rather than me just being the most unlucky person in the world. I am still looking for a diagnosis. I told my husband that if I don't get one soon I'm going to have to get pregnant again just to lose some of the weight! (jk) I am hopeful.
