I had an 8cms undiagnosed pheochromocytoma for over 17 years. Possibly born with it. My name is Peter. I’m Irish now 51.

When I was 37 after years of terrible symptoms my pheochromocytoma was discovered by accident. I may as well start at the beginning.

From the age of 20 I started suffering from terrible panic attacks. Becoming totally overwhelmed with sudden surges of adrenaline through my body that resulted in feelings of absolute terror. I went to my Doctor and he prescribed anti depressants. I knew I wasn’t depressed I was just terrified of how I felt. The medication did nothing to relieve the symptoms and I gave them up after a few months. The symptoms were getting worse, just living in constant dread, because I had become terrified of the panic attacks. I had developed a fear of the fear. More trips to my Doctor, more medication, this time anti anxiety medication, again it didn’t really work. It was suggested I go for therapy, which I did. That didn’t help so I stopped. As the years dragged on and the symptoms continued to get worse I had started to learn little tricks to help me try and cope with the overwhelming feeling of terror. At this point I was having dozens and dozens of “episodes” every day. So I had learnt that if I could break my pattern of thinking I could try and stop the loop as one wave of terror led to the next. I would dig my finger into my thigh, or pull my hair at the back of my head, where people would not see. Anything to pull attention away from the terrible fear I was overcome with, anything to try and weaken the loop. I never shared my experience with family or friends as I feared it was some sort of mental issue causing the panic attacks as I thought of them. I tried to live as normal a life as possible but I was always on the look out for those waves of terror. I stopped drinking as the post alcohol days were unbearable with the amount of anxiety I would feel. It was relentless. I wished I could escape my mind and the symptoms I suffered. I contemplated suicide but I didn’t want to die, I just didn’t want to live as I was. Ultimately I just continued on and tried to live with the terror I experienced daily.

Then after about 15 years I developed a dry cough. I had suffered other physical symptoms of headaches, periodically sweating for no reason and anytime my blood pressure was taken it was always very high. But that was always put down to white coat syndrome and in fairness it wasn’t taken that often in that period. The dry cough persisted and after after about two years of different inhalers I was eventually referred for a CT scan. As usual I was scared, but anything out of the ordinary always heightened the anxiety I felt daily. They did the CT and the Doctor that organised it called within a few hours to say we found a cyst on your right kidney. I was scared of course not knowing what was coming. After a few days I was told they needed to do an MRI scan to investigate further. As usual I was terrified of the confined space knowing the anxiety I would feel. The fear of the fear was alive and well. After the MRI I was told its not a cyst its a tumour on your right adrenal gland. They said they didn’t know if it was malignant but they thought it was benign. A few more days passed and then it was diagnosed as a pheochromocytoma. I remember hearing that for the first time. They told me they had never seen one before in the hospital, so I knew it must of been very rare. As they began to question my symptoms, for the first time in over 17 years I realised there was not something “wrong” with me sociologically. There was a physical reason as to why I had experienced so much terror and fear over my entire adult life. I had never even heard of adrenaline glands. I thought adrenaline was probably something created in the brain. As scared as I was of this diagnosis, it was mixed with complete relief that there was nothing wrong with me, on a mental level. Something that haunted me for all those years.

They put me on medication for a few weeks and I remember being told, “Peter we have never done this operation before”, so I knew I was been warned that there was a risk I might not wake up. They had said the tumour was so large that if it was not removed I might get 5 years. My wife was 7 months pregnant with our first child. As I lay on the trolley I waited for the operation, not knowing if I’d be alive in a few hours, 5 years looked alot better. I wanted to run. I wanted to meet my unborn child. But of course I couldn’t. They wheeled me in and the surgeon who diagnosed put his hand on my hand and said “your going to be ok”. I awoke in ICU absolutely ecstatic that I was alive. After a week or so I went home. My symptoms had eased but because I lived with it for so long, I still feel the residual symptoms. As if my nervous system was on red alert for so long, it’s easy to trigger it. I consider my pheo a gift. I was blessed to have it, but thats a different story.