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Cushing Disease

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Ace0310
Ace0310

Hi Everyone, 

First ever time I have ever done this, so if its rubbish then I apologise way in advance. I have recently been diagnosed with Cushing Disease after months and months of tests caused by a tumour in my pituitary gland and waiting for a phone call to discuss when I shall be having surgery, They originally said it was something called "prolactinoma" but then after explaining all my typical Cushing symptoms I was tested for that with all results coming back positive, although I still have high prolactin too which is causing other things such as milk discharge, no periods etc. 

I am 25 years of age and have not met anyone or spoke to anyone who has this condition, I was just looking for advise on what to expect in regards to surgery and how people are coping with the symptoms. I have the big round moon face, I am rapidly putting on weight, I'm an avid gym goer and gone from an athletic size 10 to a chubby 14 with all the weight distrebuted to my stomach and boobs in a matter of a month. My eating hasn't changed and I've still been keeping up the gym although I'm starting to feel tired all the time and aching. My sex drive has completely diminished, I'm depressed struggling to get out of the house. My hair is getting fine and falling out, and I'm starting to get hair on my face. Is anyone else experience these? 

Another question I am looking to see whether is related to this condition is stomach problems? I have enquired about this but nothing online seems to show a connection, I have been experiencing serious abdominal cramps overtime I eat and sometimes drink, to the point I just don't want to eat anymore to avoid the pain. i have found something called "food dependant" Cushing but I'm not sure. 

Thanks in advance!

any advise on how to manage with this would be grateful, I am usually a very happy go lucky girl with a lot of energy. Now I feel depressed, miserable and weak this condition has really took its toll on me. 

0 likes, 16 replies

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  • patty44596
    patty44596 Ace0310

    Posted

    I was scheduled for surgery within 2 weeks of confirmed diagnosis. They want to get it out quickly. I was intensive care 4 days and 2 days in a regular room. Recovery is a process. Everyone is different from what i read. My first two months was tough. I had severe nausea which docs said this is rare, lucky me. Now i have the bad aches. Patience is the key everyone tells me and im beginning to believe it. Recovery is one day at a time. Im 53 so may be older than you. I suspect i had this disease 5 to 7 years.
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