Ele's story

For years I knew something wasn’t quite right - how cliche!

I felt, I don’t know how to describe it, maybe ‘incomplete’. I always put it down to the fact that I wasn’t able to carry a sibling for our son and grow our family. I lost count of miscarriages and had always blamed myself for them.  You see, I am obese and with that comes all sorts of medical issues. For as long as I can remember, it seemed every medical professional I saw had a simple solution to any of my issues - lose weight. 

Apparently it was the reason for my diabetes, my depression, the hump on my back, my lack of energy, my inability to carry another child, my irregular menstrual cycle, my horrendous stretch marks, my migraines, my hairy face, high cholesterol… You name it - everything that was wrong with me would be righted if only I put a little bit of effort in.

I have always been ‘a big girl’. I could lose weight if I really tried hard, but if I loosened up on any form of lifestyle changes I made, I would gain back all the weight I worked so hard to lose - and some!

During the first Covid lockdown I was incredibly focused on getting healthy so we bought an exercise bike which I used every day. When I had virtually cycled the entire length of NZ I weighed myself, only to find I had put on 7kg. I was devastated! And - more determined than ever!

I had been to see a naturopath several times over the years and decided it was time to give it another crack. After a couple of visits, I devised a ‘naughty’ plan and I replaced one of my prescription medications with a natural alternative (this was a choice I made after much research). When my quarterly blood test results came back, they were worse than ever before.

I felt defeated. I felt I had exhausted all my options and nothing had worked. I didn’t know what to do next. A couple of days later, I got a text from my Naturopath…. “Have you heard of Cushing’s Disease?”

“No, why is that”

“I am positive you have it - read this”

I read the summary of symptoms, it was like someone had listed every reason I have ever been to the doctor. This was huge!

The next few months were like I was on a bullet train - speeding between stations where I saw doctors, had tests, saw specialists, had scans, gave samples, met surgeons… and very quickly I was diagnosed with Cushing’s  Disease, caused by a tumour on my Pituitary gland.

While the thought of having a rare disease was daunting to say the least, I was relieved to finally have a reason for my being the way I was and feeling the way I felt.

I knew I was in for a bumpy ride so I strapped myself in and braced myself as best as I could. While I prepared for brain surgery to remove the tumour, I had to come to terms with the fact that this wasn’t my fault and I hadn’t done this to myself. With that, I had to forgive myself for all the self-blame and self-hate that had been a huge part of my life for such a long time. It was clear that this was going to be a major emotional journey as well as physical.

Just to add to the drama that seems to enjoy being part of my life - an hour after checking into hospital for my surgery, the entire country went into immediate lockdown because Covid was running rampant again.

None of us - not me, not the nurses, not the surgeon or even the head of the hospital knew if my surgery would go ahead. Everything was up in the air but we decided to make out that it was all going to plan and we prepped for surgery the following morning.

Fortunately, all scheduled operations went ahead for everyone who had arrived at the hospital so I was good to go. The surgery went well and there were no hiccups. I felt fine and I was back home 4 days later.

My recovery was so much easier than I ever expected it would be, but... it soon became clear that I wasn’t cured of Cushing’s. In the months following my surgery, my tests continued and although there was a slight improvement, it wasn’t what it should have been. We aren’t 100% sure but the likelihood is that there is a small part of the tumour lodged in the lining of my carotid artery that is causing issues. It is deemed too dangerous at this stage to attempt to remove it.

So, what next?

I have a few options… we are starting with the least invasive and hope that it is successful. If not, we will step it up a notch and continue to do so until I am in remission.

At this point I want to let you know why I say ‘we’. I am not alone with this. I have a huge contingent of doctors and specialists guiding me. I have the most amazing family who support me wholeheartedly - even when I am in a filthy mood. I have friends who are there for me no matter what. What I have realised is, it is not just me that is impacted by this disease. My family and friends are experiencing this too and we are on this journey together.

No one can tell me why this disease chose my body as a vessel but I have always thought there must be a reason. Since my testing began I was convinced that reason was to educate. I have been so enthusiastic to let people ask me questions, poke and prod me, look at all my quirky bits. I figure the more exposure people have to Cushing’s Disease, the more likely it is that other people will have earlier diagnosis. And with that, I am super excited to be invited to take part in an international research project that aims to find a link in DNA between people who have pituitary tumours.

This research will not benefit me in any way, but could be a breakthrough to enable early detection and treatment for others. Looking back, I have had Cushing’s Symptoms for more than 30 years. If I can reduce that time for someone else - then that is my reason.