And It's About Time There Was Some Support For Cushing's!
I was diagnosed with a 8mm prolactinoma in 1999 and have been on Dostinex on and off since then. I had no problems with the treatment, I even had a baby in 2000.
Then about a year and a half ago, my husband and I started trying to get pregnant again. I got off the pill and never had a period. I went to my gyno and he wanted to put me on fertility drugs right away. So after thinking about it for a couple of months, I decided to try the drugs. They didn't work. Then I began to develop symptoms, such as weight gain, depression, lose of hair, facial edema, etc. After being told by my doctor and an endocrinologist/fertility doctor, that the weight gain was due to my age (I'm 33), no period was stress, I started doubting myself. I thought I was going crazy, especially after that same doctor told me she thought I might be bipolar.
While all of this was going on, I developed pain in my hip, which I thought was from running. I finally went to the doctor and he did an MRI on my hip and discovered I had avascular necrosis of the hip. In other words, a bone in my hip died and I will have to have a leg graft in August. My brother-in-law, who is a doctor looked at all of my symptoms and said he thought I might have Cushing's Disease. I asked the endo-fertility doc. to check my cortisol, and she said, "If it is high, it's due to stress". She didn't test me, so I went to another doctor who would. The test results showed that I did have a very high level of cortisol. We then decided that the tumor must be causing this, so on March 24th, the day after my birthday, I had transsphenoidal surgery at UVA, Dr. Laws. I'm recovering now. I feel pretty good, but am getting impatient about the weight gain and my hair looks awful. After having straight hair all of my life, I now have curly, frizzy hair. I want to try to look half way decent before my husband, who has been in Qatar since March 1st, comes home. He is a F-16 pilot. Hopefully, he'll be home before my hip surgery.
Another thing I want to mention is I just found out last Wednesday that my 2 1/2 year old son is autistic. I had to tell his daddy, over the phone and he didn't take it too well. Through all of this, I feel like it's made me a stronger person. We will get my son all of the therapy he needs and we have plenty of family around that love him and will help in any way to get him through this.
I didn't realize how lucky I was before all of this. If you have your health, you have everything.