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Diane C's Story...

I was diagnosed with Cushing's Disease at the age of 25. 1987, I think. A year after my second child was born.

I lost my weight after the birth but then for no reason started to gain weight in my face shoulders and neck. I suffered bad back ache, started to get facial hair and on my back and shoulders. I bruised very easily and was feeling very depressed. My husband and myself joked about the hair and the size of my top half saying I looked like a Russian shot putter, or an athlete on steroids, which was actually what was happening inside, the excess steroids. He told me I was turning into a werewolf. We laughed about it at first but I eventually got very concerned. Especially with the back weakness and bruising.

I went to my GP with all my symptoms and was trying to laugh it all off but she said I think you might have Cushing's Disease. I had all the tests and I did have this dreaded disease.

For the first 4 years I was classed as Borderline and the hospital weren't too concerned they monitored me every 6 months. I was eventually discharged and in about 1992 I developed a terrible itchy rash all over and nothing would cure it. I was sent to Hope hospital for tests and they noticed in my records that I'd been investigated for Cushing's in the past and this made them wonder if there was a connection with the rash and the Cushing's. They told me they wanted to start all the test for Cushing's again and carry it right through this time.

I did have every possible test including the petrosal sinus test which proved I had a tiny tumor on the right hand side. It still wasn't visible on the scan so I was monitored again and also had bone density scans. I was put on Didronel to help my bones as I was in the early stages of osteoporosis.

After yet again another head scan 3 years ago and still no real sign of the tumor my surgeon suggested that we wait a little longer in case it does grow, it would be easier to work on and I was feeling fairly well really at this time just fat and hairy with back ache and bruises. Compared to full blown Cushing's that's nothing is it?.

Anyway, I had my next scan this year June 2002 and low and behold there it is the little devil that's been hiding all these years. I already knew from a previous clinic appointment that the top endocrinologists had all discussed my case on numerous occasions and had decided that whatever the x-ray showed this time tumor or not that it was now time to operate.

I'm glad the evidence of the tumor is there I know at least that they can see what they're after. I was told that I'd be put on the waiting list straight away and it will be about 4 or 5 months wait for the OP. I was scared when I left the clinic and wasn't sure if I'd done the right thing by agreeing to have the OP but when I got home and found this site I know I've done the right thing. I wouldn't want all the other symptoms that come with Cushing's which I don't yet have. They would inevitably come sooner or later. I'll be 40 in September.

They do say life begins at 40. Fingers Crossed. { I hope I haven't bored anyone}