Living with Cushing’s Disease

The story of Esther

I was 12 when I started to experience excruciating menstrual pains whereby I had to  take a day off from school each month. My face and neck would be covered with severe rashes that gave off a burning sensation. I felt like I was on fire, and would rock from side to side for hours to relieve the pain.      

I also suffered from severe hyperhidrosis (excessive sweating) from my scalp and face. I would drip endless buckets of sweat and there wasn’t a reasonable solution to eliminate or control it. I carried on, trying to live a normal, vibrant social and working life. I was able to hide the discomfort of sudden hot, sweaty flushes. I tried hard to appreciate quality time spent with my loved ones, and taking pride in being known as the larger than life character, the soul of the party.

In 2014 I started feeling different. My hyperhidrosis worsened, restricting me from carrying out the simplest of chores like; watching TV, relaxing, dancing, going to the gym and cooking. I developed asthma, hay fever and sleep deprivation. I was told this was all probably down to stress and that I should try therapy, yoga or meditation.

In 2015/2016 my life was pretty much at a standstill, mainly due to my hyperhidrosis allowing only one to two hours of sleep per night. My GP recommended sleeping pills which I only took because I was desperate and naïve. I wanted to feel more human and not like a zombie all the time. I was told I was obese and needed to eat well and exercise regularly. I was already doing all of that yet nothing was working. I was getting sicker. It was soul destroying to see so many physical changes yet have no control over any of it. Some medical professionals made me feel like I was going crazy, over exaggerating my symptoms. I refused to give up.

Relationships became strained, it was hard dealing with the unknown. I felt overwhelmed with all the suggestions of what I should and shouldn’t be doing. It became a very scary, dark and isolating place to be at times. I lost and gained friends during the hard times. I continued to push for answers because I so desperately missed doing all the things that made me happy. I tried very hard to be strong, determined and positive.

After being referred to multiple specialists I was misdiagnosed with polycystic ovary syndrome. I was prescribed medication to help with weight loss, referred to a weight management programme and considered for bariatric surgery, which I didn’t want. I knew it wasn’t my lack of self-control causing the weight gain, I was physically broken. I was tired of struggling to; walk, breathe properly, being ashamed of the way I looked and feeling so lethargic all the time.

In 2017 I was finally diagnosed with a life threatening and rare condition called Cushing’s disease. I had a benign tumour on my pituitary gland, in the base of my brain. I felt an overwhelming sense of relief, not to have such a debilitating disease but to finally have an answer and a solution. The nightmare was coming to an end.

No-one could have fully prepared my mother (my carer), loved ones and I for the everyday challenges of the variety of symptoms following my pituitary brain surgery. My body was withdrawing from the high levels of cortisol despite reducing my steroid (hydrocortisone) doses. I had body shakes, hot and cold flushes, grinding teeth, rocking, pacing back and forth, itchy skin, slurred speech, forgetfulness, headaches, chronic fatigue, and whole body and bone pains. I had to learn to be patient with the process. I surrounded myself with belly aching laughter, love and positive energy.

I am so grateful to have been given a second chance at life. At times I forget that the small things I have achieved are actually huge in comparison to what I was able to do prior to surgery. I’m very proud of myself. It’s so important to remind yourself of all the positives, to be grateful for all that you have.

I am eternally grateful to my mother, boyfriend, friends and supportive medical team for not giving up on me.

Thank you to the Pituitary Foundation for the resources that have helped me better understand, and cope with my Cushing’s disease. You have provided me with a safe place to turn to for advice and support and gave me a sense of belonging.

I strive to spread awareness about Cushing’s disease. To help mentor vulnerable children and adults that have experienced trauma or any form of mental illness. It’s important that I add value and positivity to someone else’s life.

There is a solution to most things, we just might have to fight that bit harder. Be kind to yourself and listen to your body, it’s sacred.

*Find others with Adrenal Insufficiency on RareConnect, the online platform for people affected by rare diseases

My Cushing's Disease Film