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Desley's Story...

Hi my name is Desley and I'm 28 years old and live in Sydney, Australia.

My periods began when I was 11 years old and they were like clockwork for about 2 years then they became irregular every 60 to 90 days approximately. So I went to the local doctor and she prescribed the pill. When I was 15 I got these little red dots on my upper arms and back. My face started getting very round, red and blotchy. About the same time I started having severe headaches. I went and saw about 7 different doctors including a neurologist but they could not find anything wrong.

In 1992 when I was 17 I met my future husband and fell pregnant. I got severe lower backache when I was only 8 weeks pregnant and could hardly walk for the rest of the pregnancy, our son was born 5 weeks early. After he was born I weighed 80 kilos (176 lbs), but by the time he was 11 months old I weighed 105 kilos (234 lbs) and had massive stretch marks that looked like tiger stripes all over my stomach and breasts. I was exhausted all the time, my back ached. I had an x-ray on my back, nothing was wrong. My headaches continued and I tried every migraine drug available. I again went and saw a neurologist and was told nothing was wrong. I thought all my symptoms was from having a baby. Every diet I went on never worked, only ever losing a few kilos and then putting it straight back on again.

In 1998 I gave birth to our son, born eight weeks premature because of pregnancy induced hypertension. This is the only time I have ever had high blood pressure. In 2000 our daughter was born only 3 weeks early.

My symptoms were getting worse. My mum showed me a article about Cushing's syndrome and I instantly new that this was me. I straight away got a referral to an endo and when I went and saw him, he straight away diagnosed me with PCOS. He said I couldn't possibly have Cushing's because I don't have high blood pressure. He ran a 24 hour urine and some blood tests and told me he would ring if there was anything wrong. I never heard from him. He told me to exercise, what foods I should be eating and what to clean my face with. I was so angry, he treated me as if I was just fat and stupid. I thought he is a specialist. He must know what he is doing. I had not done much research into Cushing's at the time.

I let it go for about 18 months and because my symptoms have became so much worse. Aching Arms, legs, back, headaches, hair on my chin and chest getting worse. fatigued as well as insomnia because waking up every hour or more to go to the toilet. I have been on anti-depressants for the last six months because of depression and anxiety. My weight keeps going up I now weigh 124 kilos (274 lbs). I'm so glad I saw that article, If I hadn't I would still think that I was normal and all my problems were because I had put on weight.

I think I may have had this for 12 or 13 years. But since I have only known about Cushing's for 2 years. I think my journey for a diagnosis may still only be at the beginning. I hope my story may help other people get educated and informed about this terrible disease.

May 2003

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