Skip to main content
Home » Rare diseases » My road to recovery from Cushing’s disease
Rare Diseases February 2019

My road to recovery from Cushing’s disease

Having suffered debilitating symptoms for years, Esther found a new lease on life after she was finally given the correct diagnosis.

I was 12 when I started to experience excruciating menstrual pains. The stomach cramps would cripple me, my face and neck would be covered with severe rashes.

I had severe hyperhidrosis (excessive sweating) from my scalp and face. I would drip endless buckets of sweat and there was no way to control it, but I carried on, trying to live a normal social and working life.

I was told my symptoms were due to stress

In 2014, my hyperhidrosis worsened, I developed asthma and hay-fever and I started to suffer from sleep deprivation. I was told this was all probably down to stress.

By 2016, my life was at a standstill. I felt like I was, a prisoner to my hyperhidrosis and I was running on 1-2 hours sleep a night. Reluctantly, and only out of naive desperation, I took sleeping pills that my GP recommended. I wanted to feel human, and not like a total zombie all the time because I wasn’t getting enough sleep. I was told I was obese and needed to change my lifestyle habits – eat well and exercise regularly.

I was doing all of that and more for years prior, yet I was getting worse. Some medical professionals made me feel like I was exaggerating my symptoms.

I continued to push for answers because I so desperately missed doing all the things that made me happy. I tried to keep a positive mindset throughout it all. Even though my body was failing me, I wasn’t going to allow my mind to fail me too.

I was misdiagnosed, and weight loss surgery was suggested

After being referred to multiple specialists – dermatologist, hair and nail specialist, endocrinologists. I was misdiagnosed with PCOS syndrome. I was also referred to a weight management programme to be considered for bariatric surgery. I was petrified, as I didn’t want this type of surgery. I knew it wasn’t my lack of control causing the weight gain. I was tired of feeling so lethargic all the time and ashamed of the way I looked.

In 2017 I was finally diagnosed with a life-threatening and rare condition called Cushing’s disease, following the discovery of a benign tumour on my pituitary gland. I felt an overwhelming sense of relief to finally have an answer.

Nothing could prepare me for the recovery journey

A year has passed since my surgery and, while nothing could fully prepare me for the recovery journey, I am so grateful to have been given a second chance at life. I am proud of myself for not allowing the debilitating symptoms that follow after surgery to completely take a hold of my life.

I am currently trying a phased return to work and I am also looking to volunteer with local charities to help mentor vulnerable children and adults who have experienced trauma or any form of mental illness. It’s important for me to add value and positivity to someone else’s life; to enable individuals to better deal with the demands and challenges of everyday life.

I will strive hard to spread awareness about Cushing’s disease and recommend anyone experiencing symptoms to check out The Pituitary Foundation, whose resources have helped me better understand and cope with my condition.

Next article