Dayna’s Journey

Cushing’s Disease

My hope is that being open with my experience and journey will help someone suffering with the same thing to not feel so alone.

My journey started as a child. At the age of 4, vomiting with anxiety going to preschool. Biting through every fingernail I ever grew. Nervously playing with the corner of sheets, and blankies to soothe myself. Sitting in corners feeling lost and anxious.

Things continued to get worse. I fainted in church services, after hot showers, and after standing up too quickly. I got my period at age 10, which was a shock to me. I suffered for years with debilitating bleeding, and extreme PMS mood symptoms. I had sought help from so many healthcare providers and specialists throughout my childhood years, all of them suggesting that my symptoms were purely anxiety. I had gastrointestinal symptoms, which were put down to IBS, the neurologist thought I was a hypochondriac as I thought I had Multiple Sclerosis. After numerous visits, I became her annoying anxious patient. This was extremely traumatic, and I started to doubt myself and become obsessive over how I was feeling and trying to work out myself what was going on in my inner body. I knew something was not right. I have a strong sense of intuition and my mind and body were telling me something.

After these experiences, I started to believe it was just me and mental illness. I continued to wade through the mud every day. I successfully finished high school and did well at university. It took every bit of energy within me. Every Day. But I did it.

I have a wonderful husband and family. I continued to battle through jobs with endless anxiety, muscle twitching, and gastro symptoms. I got married and managed to successfully have my first daughter. It was a lovely time, apart from the insomnia and heart palpitations. I battled with some post-natal depression but felt I was where I wanted to be. A mum of a beautiful girl, and a supportive wife. I became pregnant with my second daughter, and this is where it all erupted. At the beginning of this pregnancy, I was hit with extreme nausea and low blood pressure that I couldn’t get off the floor. I was admitted to hospital for IV fluid but once again sent home with an unqualified illness or flu. I once again battled through and had another beautiful daughter. When she was 2 years old, I had encountered a stressful time as we were moving between the UK and Australia and trying to renovate a house. I was struck with endless vomiting, nausea, insomnia, and it felt like my body was starting to explode. After a visit to my wonderful new GP, she sent me for an abdominal ultrasound where they detected a 2.5cm Adrenal tumour on the right side.

I was in shock but felt a sense of relief at the possible explanation. My GP assured me it was benign and usually they are found without any consequence. After visiting an endocrine surgeon for a second opinion, the words just wrung around the room, it could be related to a few things, adrenal cancer, pheochromocytoma, thyroid cancer. My world stopped. I was booked in for a CT scan which revealed there was something funny with the washout and it looked quite dense. It needed to be removed ASAP and several tests performed to determine the type of tumour. Following the tests, it was confirmed the tumour was in fact a functional tumour, in that it was producing very high levels of Cortisol. I had my planned adrenalectomy and was relieved when the results came back non-cancerous.

The recovery has been long and difficult. The cortisol state has been resolved, and after many months of steroid therapy to wake the other gland up, my other gland did recover.

I must deal with my body trying to adjust to a new life without high levels of steroid. It is all my body and mind has ever known. A turbo version of me. I am now a leaf falling from side to side in the wind. Some days I feel my body and particularly my brain need the help of an engine to function. My engine for most of my life was cortisol.

It amazed me that the doctors suggested I would be entirely cured after surgery. What I have learnt after some very detailed research, personal experience and consultation with professors in the field is that there are lingering impacts left by the high levels of steroid which nobody tells you about. Issues with metabolism, mental health and anxiety, fogginess, cholesterol, and heart health. Not to mention the ongoing fatigue and issues with menstrual cycle and the related female hormones.

I have had a difficult journey navigating my way through this, with so much trauma and impact on the way. I wish there was more education on these hormone related disorders so that people do not feel so alone and stereotyped as hypochondriacs. This can lead to long term damage and pain that is difficult to overcome.

My hope is that being open with my experience and journey will help someone suffering with the same thing to not feel so alone. I found the only comfort for me was finding people with a similar story on the CSRF website which was a first-hand encounter of people’s journey with Cushing’s disease.

Dayna