Seeking joy and finding support – Lily’s story of how she manages Cushing’s disease

For our Pituitary Awareness Month 2026 campaign, ‘Symptoms in the Spotlight’, Lily shares her story. You can find out more about our campaign and read more of our community’s stories on our website here.

My name is Lily, I’m 31 years old, and in June 2025 I had my entire pituitary gland removed due to a tumour caused by Cushing’s disease.

Before my diagnosis, I had been going to my GP for years with a whole range of symptoms: extreme fatigue, mood swings, brain fog, deteriorating eyesight and many more. But the biggest and most noticeable change for me was my weight. I gained so much weight, despite trying everything I could to lose it.

I went through IVF, pregnancy and a year postpartum before I was finally diagnosed with Cushing’s disease. I’ve since been told that I had probably had the tumour for at least four years before it was discovered.

I remember looking at my stomach after having my baby and thinking, “I’m not pregnant anymore, so why do I still look pregnant?” I was going to baby groups and watching other mums get back into their pre-baby jeans, while I seemed to be getting bigger and bigger, no matter what I did. I became incredibly self-conscious, I barely recognised myself anymore.

I was told by my GP that some women simply don’t “bounce back” as quickly after having a baby and that I needed to exercise more. At the time, I genuinely started to wonder if I was going crazy. Every time I tried to exercise, I would become so exhausted that I would end up in bed for two days afterwards.

“At the time, I genuinely started to wonder if I was going crazy. Every time I tried to exercise, I would become so exhausted that I would end up in bed for two days afterwards.”

Looking back now, I can’t believe how unwell I was for so long. My baby was definitely what kept me going. As my health continued to deteriorate, I knew something wasn’t right and decided to push for a referral to see a private endocrinologist. I knew this was more than just a post-baby hormonal imbalance. Within a couple of weeks of meeting my endocrinologist, I finally had my diagnosis. It was a huge relief to know that I wasn’t going mad and that there was a reason for everything I had been experiencing, but it was also frightening to think about what the future might look like.

I underwent surgery to remove my pituitary gland. Thankfully, the surgery was successful and I am now in remission from Cushing’s disease. However, my recovery has not been straightforward. I contracted meningitis following surgery and have experienced several complications since then. There have been some very difficult moments, but I am slowly rebuilding my life.

Despite everything, I have now lost four stone and am starting to enjoy the things I loved before Cushing’s again. Recovery is a journey, and it certainly isn’t a straight line, but I am beginning to feel more like myself.

Because I no longer have a pituitary gland, I now have to manage several lifelong conditions, including secondary adrenal insufficiency. At first, I found it incredibly overwhelming to think about lifelong medication, new conditions and adjusting to a completely new normal. Over time, though, I have realised that educating myself about my conditions has helped me feel more confident and in control of my health. I cannot stress enough how much “knowledge is power” when it comes to your health, especially when living with a rare condition.

To anyone currently battling Cushing’s disease, I would say: keep going. Things might not get better straight away, and recovery might not happen as quickly as you would like, but things will get better. There really is life after Cushing’s, and you will feel like yourself again.

For those who are in remission, my advice is to live a full life and keep doing the things you love, even if you sometimes have to adapt them. I love walks along the beach, yoga and making fun memories with my partner and our son. These simple things have become even more precious to me since my Cushing’s journey. During one of my lowest moments, my mum told me, “You have to find a bit of joy in each day,” and those words have stayed with me ever since. Finding those little moments of happiness has become so important to me. 

“During one of my lowest moments, my mum told me, “You have to find a bit of joy in each day,” and those words have stayed with me ever since. Finding those little moments of happiness has become so important to me.”

I have also had counselling through RareMinds, who work with the Pituitary Foundation, attended group meet-ups and connected with other people through social media. Having people around you who understand what you are going through can make such a difference. My family will always be my biggest support, and I honestly don’t know what I would have done without them. When people tell you they are there for you, believe them. Lean on them and let them help — they genuinely want to.

And finally, there is my son Tommy, who is now a happy (not so little!) two year old. He is still my ray of sunshine and reminds me every day that, although I may not have been lucky with my health, I am incredibly lucky in so many other aspects of my life. Cushing’s has changed my life in ways I never expected, but it has also taught me not to take the little things for granted, and to find a bit of joy in every day.

Thanks you for reading!