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Rachel's Story...

I am now 24 years old.

I was referred to a gynaecologist in 2001. I was back and forth with scans and testing for PCOS due to presenting with symptoms for this. Anyway this went on for a year and I just went along with what the doctors said I had, mainly because I'd never heard of Cushing's Disease so I couldn't compare my symptoms to anything else.

Another appointment was set in a further 6 months ~ in this time I had put on 18lbs. This made me feel really bad because previous doctors had told me that if I lost weight my 'pcos syptoms' would be less severe!!

During a check up in 2002, I saw a doctor I hadn't seen at all before, he ordered a 24 hour urine test and set up and appointment for 4 weeks later. On my next appointment he said he was referring me to an Endo.

When I saw my Endo he set me up for a 72 hour urine test, then a series of Dexamethasone tests.

The results were back and he confirmed I had Cushing's Disease. AT LAST ~ I had a name for the way I was and the way I felt. It seems odd, but I saw so relieved.

After this I had Petrosal Vein Sinus Sampling done and also an MRI scan which confirmed I had a tumour on the pituatry gland.

I saw the surgeon on Sept 2003 and I am still waiting for surgery. I'm hoping that it will be very soon.

As soon as I hear more I will update this page.

Finding this site has been a massive help and the information on it is brilliant.

Thanks for reading.


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