This article is adapted from the personal account I originally shared with The Pituitary Foundation in December 2024 and updated in February 2026.

‘I’ve got a headache.’
‘My head hurts.’
‘Oh my god, I’m so tired.’
‘WHY. AM. I. SO. TIRED?!’

For a long time, I felt like a broken record, and sometimes I still do. But it wasn’t always that way.

Aside from the immediate aftermath of a head injury in 2010, headaches for me probably meant one of three things: too much wine, too little sleep, or too much sun on holiday. Despite a lifelong on-off battle with insomnia, I was energetic, resilient and perfectly capable of powering through busy work schedules in my twenties.

I never gave a second thought to my pituitary gland, which I vaguely remembered from GCSE biology, or whether it might be quietly misbehaving. All of that changed in mid-2021.

When everything started to unravel

After a relatively minor fall from my bike (helmet on, thankfully), I developed what was labelled a mild concussion and whiplash. What followed in reality were months of destabilising, debilitating headaches that would leave me bedbound in a dark room, unable to function for days at a time or even tolerate looking at my phone.

I ended up in A&E in London several times because of the pain, but I was never offered a scan. At best, I was given paracetamol before being sent home. It wasn’t until I sought private neurology care later that year that proper investigations began.

That winter, something far more serious was brewing. What I now suspect may have been a prolonged, non-acute adrenal crisis left me constantly vomiting, in severe pain, drenched in sweat (I am normally permanently on the cold side), unable to eat properly and barely able to move around my house for most of December. At 30 years old, I had never been so unwell.

By January 2022, after multiple MRIs, much angst and extensive hormone testing, I was diagnosed with a suspected benign pituitary tumour: a macroprolactinoma, and potentially life-threatening secondary adrenal insufficiency.

Within days of starting hormone replacement medication, I felt like a new person. Friends, family and I were understandably relieved that this ‘thing’ was not malignant, but I could never have imagined how much turmoil it was going to cause me over the next three years.

The start of uncertainty

One month later, in February 2022, the unbearable headache returned, and I was admitted to hospital for six days. This time, the diagnosis was suspected pituitary apoplexy — a sudden bleed into the tumour, and an incredibly unlucky complication.

I recovered reasonably smoothly, but a month later, I was readmitted again. Hypophysitis — inflammation of the pituitary gland — was mentioned for the first time.

Because my case was already considered highly unusual, I was offered a pituitary biopsy that summer. Feeling more stable and desperately wanting my life back, I declined. In hindsight, I sometimes wonder whether that decision delayed clarity, but we’ll never know for sure.

The illusion of a fresh start

In September 2022, shortly after moving from London to Amsterdam and trying to rebuild my independence and career, the headache returned.

This time it escalated quickly: vomiting, fever and a stiff neck. I was diagnosed with bacterial meningitis.

I strongly suspected my pituitary lesion was involved, but there was reluctance to investigate further. After two painful (in all senses) weeks of IV antibiotics on the neurology ward, I tried to resume normal life, finally starting a new job In Amsterdam. But within six weeks, and only two weeks into my new role, I was back in hospital in the worst physical pain I have ever experienced with another episode of suspected bacterial meningitis.

I was transferred to an academic research hospital, where an MRI suggested a pituitary abscess — another rare and serious complication — which likely explained the recurrent meningitis.

I went through six more weeks of IV antibiotics at home, which I was trained to administer myself. By January 2023, the abscess had disappeared on an MRI, and for the first time in months, I felt cautiously hopeful. I started reintegrating back into work (though this had to be done very cautiously) and began rebuilding some sense of normality and social life.

The cycle repeats

Eight months later, just as the summer was ending and life felt steadier, I woke up one morning suddenly with that all-too-familiar breed of headache and an impending sense of doom. Within days I was bedbound, unable to tolerate light and back in hospital. The abscess had returned.

Two days later, I underwent surgery to drain it and take a biopsy. Six more weeks of IV antibiotics followed. Frustratingly, no causative bacteria were ever cultured — not from the biopsy, and not from previous lumbar punctures either.

In June 2024, the same pattern happened again. But this time, because no bacteria were identified, the focus shifted more strongly towards chronic hypophysitis again — inflammation rather than infection.

In September 2024, when I (quite predictably, by that point) ended up admitted to hospital again, I agreed to trial very high-dose IV steroids for suspected hypophysitis. Over 24 hours things improved, I was well enough to walk around the hospital grounds with my husband and dog, and I truly started to believe we might have found the correct treatment this time. But from the middle of that night, my condition deteriorated rapidly and I needed my third pituitary surgery in a year. Nine more weeks of disruptive IV antibiotics followed alongside steroids because doctors still couldn’t entirely rule out infection. Ultimately, no one could say what was causing this to keep happening, so I felt certain it would happen again, within months.

By that stage, my mental health was pretty much in tatters. Living inside an unpredictable body, never knowing whether the next headache meant surgery, infection or inflammation, or something else, is something I wouldn’t wish on anyone. I felt completely out of control of my own life.

Light at the end of the tunnel

In January 2025, shortly after first sharing my story publicly, via The Pituitary Foundation, I woke up with that familiar headache again. This time, I insisted on immediate high-dose IV steroid pulse therapy to treat inflammation, as I felt confident it needed to be tried again. Within days, things stabilised.

If it had been an infection, the immunosuppressive effect of the steroids would have made it dramatically worse. Since it didn’t, this was the turning point I’d waited for so long for.

I was finally diagnosed with suspected autoimmune hypophysitis — a rare inflammatory autoimmune condition that is notoriously difficult to diagnose and often misidentified as other pituitary disorders.

I am now medically stable on immunosuppressant therapy, with a stable management plan in place for now. I still struggle with frequent headaches, unpredictable fatigue and fluctuating energy, which I have gradually become more attuned to and am generally able to navigate and anticipate. As I am immunosupressed I am much more vulnerable to viruses and infections. My body will never be the same, I’ve had to make many lifestyle adjustments, my social and work life looks entirely different, and I will be taking various medications for life. But the present and future feel far brighter than they did before.

How my experience changed me

This experience changed me in ways I couldn’t have predicted. It forced me to become deeply attuned to my own symptoms, and I learned to recognise subtle shifts in my body long before scans confirmed anything. I truly feel that I could sense what was happening and had a strong ‘gut feeling’ that what was happening couldn’t (especially given the evidence) be explained as an infection. I learned to advocate for myself inside and outside of hospital rooms and have realised how resilient I am, despite how difficult and dark things have felt at times.

I learned how easily rare inflammatory conditions can be misdiagnosed, and how essential persistence can be. I have also learned, both through my own experience and my health coaching studies, just how important the role of a good diet and healthy lifestyle is in managing symptoms and flare-ups (more on that to come later).

But beyond navigating the medical system, it fundamentally changed how I think about health. It’s all too easy to take good health for granted when nothing is wrong, but as soon as this changes, you realise how non-negotiable it is to protect it. Without the strong foundations of good health, you have very little to work with, and I couldn’t possibly imagine not putting my health first again. This particular realisation planted the seed for my desire to retrain as a health coach. 

The beginning of my path to health coaching

Living through years of uncertainty showed me that although some health events arrive completely outside our control, there is still a great deal within our daily lives that is within our control. The way we nourish ourselves, how we sleep, how we respond to stress, how we move, and how early we act on changes in our bodies all contribute to our resilience, particularly when facing chronic illness or inflammation.

When so much of my own health felt unpredictable, identifying where I did have influence became both stabilising and empowering. I began to understand that small, consistent habits matter deeply. Supporting the nervous system, good nutrition and protecting energy all matter. Not because these things alone offer a cure, but because they create a stronger foundation from which to cope, recover and live well.

As my priorities shifted, it became increasingly important to me that whatever I chose to do next would feel meaningful and practical. I wanted to work in a way that allowed me to directly support others in strengthening their own health foundations, particularly those navigating ongoing symptoms or flare-ups.

Health coaching feels like a natural extension of everything this experience has taught me. If there is one thing I now believe wholeheartedly, it is that even when circumstances are complex, you are rarely as powerless as you might feel. With the right knowledge, structure and support, it is possible to build steadier ground beneath your feet and to feel more confident in the way you care for your health. That is the work I am committed to doing, both for myself and for the people I support.