I was diagnosed with Cushing’s disease in June 2013 after 11 years of frustration and testing and being told there was nothing wrong with me . It was caused by a tumour on my pituitary gland.
For years I have known something was wrong but every time I went to the doctors, I was made to feel like I was wasting their time. All my symptoms were quite small and insignificant and were therefore brushed off. Until, when at a particularly stressful time in my life I had a lot of symptoms occur at once over the period of a few months. That made me push for some answers. Not happy with the response I was getting at my current GP’s I decided to move and try another one. The doctor I saw there, I owe a lot to, as she could sense my frustration and persevered with me to find out what it was. I remember her words now “I’m going to test you for this really rare disease called Cushing’s – but I’m sure it wont be that” And so it started……
Now let me tell you a little bit about Cushing’s…..
“Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.
“Pituitary adenomas cause most cases of Cushing's syndrome. They are benign, or non-cancerous, tumours of the pituitary gland which secrete increased amounts of ACTH. Most patients have a single adenoma. This form of the syndrome, known as "Cushing's disease," affects women five times more frequently than men.“
Having Cushing's disease stopped me doing alot of the things I loved doing and should have been able to. The main one being my fitness and weight. I led a very healthy and fit lifestyle, swimming everyday, going to the gym, attending regular boot camps, yet I was always the one at the back, I was always out of breath and I put on lots of weight. It was really frustrating and really got me down. This of course was one symptom amongst many others.
In August 2013 I had surgery to remove the brain tumour that was causing my illness. This was micro-surgery at a specialist hospital by a Neruosurgeon. Post op,I have been told there is a long recovery process with the initial period being at least 3 months rest, off work with then up to 2 years full body recovery. It seems this operation will take it out of me both physically , emotionally and mentally. It is a huge life change as I am now on lifetime medication to sustain a 'normal' life and need to balance my medication to deal with certain situations and I have also got Diabetes Insipidus due to problems with the surgery.
I really want to revert my life and my body. I want to lose the excess weight but not just that. I want to make a difference. This achievement will hopefully inspire others. My main frustration has been the unknown for all these years and getting nowhere. I want to help others overcome this frustration and have the confidence and determination to keep going to get their answer. I want to inspire others so that someone can look at me and say because of you I didn't give up! I see this as an opportunity to start getting results from what I have always strived to get results from in the past.
My personal aim is to reach my ultimate goal of climbing Kilimanjaro in Oct 2014. This is a huge challenge for me as I will only be 1 year post op when I plan to do it but I am determined to do it!
The Pituitary Foundation have always been there for me since my operation, whether it be to answer my questions, give me advice or just have a general chat. It's so nice to be able to speak to someone who has suffered the same as you considering it's such a rare disease. The work they all do to keep the charity going is phenomenal and I want to do as much as I can and raise as much money as possible to help.
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