IT WASN'T IN MY HEAD. ❤️

Fifteen years of pain. Two life-changing diagnoses. And the people who helped me find answers.

For 15 years, I lived with debilitating gut pain, unanswered questions and a body I couldn't rely on.

My pain started in 2011. For years, I underwent investigations, received different explanations and tried treatments, but I was repeatedly left without a clear answer. The pain was real, exhausting and affected almost every part of my life.

How it affected my life

It began with bouts of pain in my upper stomach. I would feel full after only a few bites and experience nausea after eating. One meal could send me into days of pain.

Over time, it became all-encompassing. I lost weight I couldn't afford to lose, dropping from 56 to 48 kg. I became malnourished and had to live on Sustagen for a while. My energy was at zero.

I struggled to keep working. I would start new full-time jobs and not last more than a couple of months because I couldn't rely on my body from one moment to the next. Even temporary work became difficult.

I started cancelling everything: catch-ups with friends, family events and even health appointments. Not because I didn't care, but because I couldn't trust my body to get me through them. My friendships, family relationships and support network all felt the impact.

Then depression set in. I had lost so much of my health, independence, career and quality of life. I was exhausted, and this year I reached the end of my ability to cope.

The explanations that didn't explain it

Over the years, I was treated for or given explanations including reflux, IBS and severe gastric indigestion. Coeliac artery stenosis also appeared in my medical history and had been considered as a possible explanation for my pain.

I don't have reflux, IBS, severe gastric indigestion or coeliac artery stenosis as the explanation for those 15 years of pain. None of these ultimately explained what I was experiencing.

When investigations didn't provide answers, it could feel as though the reality of my pain was being questioned. But I knew what I was living with. My pain was real, and so was everything it took from me.

My mind could not possibly create 15 years of debilitating physical pain.

Research has also found that people living with disorders of gut-brain interaction can experience stigma around their symptoms. That matters, because not having an obvious result on a test does not make someone's pain less real.

The conversation that changed my life

Then my wonderful brother suggested I might have ADHD.

Honestly, there isn't another living person I would have listened to in quite the same way. I trusted him, and I'm incredibly grateful I did.

I pursued a formal diagnosis with a psychiatrist, with family involvement in the process, and received an ADHD diagnosis. It changed my life. For the first time, so many things about myself and my experiences began to make sense. I had an understanding of myself that I had been missing for so long.

A psychiatrist who looked at the whole picture

My psychiatrist did more than assess my ADHD. She strongly encouraged me to pursue further medical investigation and treatment for my ongoing gut problems.

While reviewing my medical history, she picked up on the previous coeliac artery stenosis diagnosis — something that had once been considered a possible cause of my pain. She recognised that it deserved further attention and encouraged me to keep pursuing answers.

I feel incredibly fortunate to have had a psychiatrist with such knowledge and a holistic approach. She didn't look at my ADHD in isolation; she considered the bigger picture and recognised that my physical symptoms also needed answers.

When I later spoke with doctors in my family in the Czech Republic, they were genuinely impressed by my psychiatrist's knowledge and holistic approach. That reinforced just how fortunate I had been to have someone who was willing to look beyond one diagnosis and consider the whole person.

Finally, a name: DGBI

A few months later, I saw a specialist about my ongoing gut problems and finally received another diagnosis: Disorder of Gut-Brain Interaction (DGBI).

For 15 years, my pain had been real, but I didn't have a name for what was happening. I was particularly surprised to learn that the term DGBI was introduced in 2016, five years after my symptoms first began.

DGBI describes a group of recognised disorders involving the way the gut and brain interact and communicate. That interaction can affect how gut sensations and signals are processed, and it can cause very real physical symptoms and pain.

Finally, I had a recognised medical explanation for the gut-brain interaction involved in my symptoms. It wasn't imaginary, and it wasn't something I could simply think my way out of.

IBS is one type of DGBI, but DGBI is a broader group of conditions. The Rome Foundation introduced the terminology in 2016 to describe these disorders more accurately and move away from the older “functional” label. The conditions themselves did not suddenly begin in 2016; the terminology gave them a clearer, recognised name.

DGBIs are common. Research in Australia has found that around four in ten adults meet the criteria for at least one DGBI.

Treatment: addressing the gut-brain signals

My specialist has started me on a gut-brain neuromodulator. These medicines can help regulate the pain signals travelling between the gut and the brain. They are used to address gut-brain symptoms, not because the pain is imagined or simply a matter of mood.

They are not a quick fix and they are not right for everyone. Treatment needs to be discussed with and monitored by the treating specialist. For me, it has meant finally having a treatment approach that recognises the gut-brain interaction involved in my symptoms.

The connection I hadn't known about: ADHD and the gut

I also discovered that research is showing an association between ADHD and gastrointestinal problems. Studies have reported higher rates of some gut symptoms and disorders among people with ADHD.

A 2026 review of 23 studies, covering more than 1.9 million people, reported higher odds of gastrointestinal symptoms among people with ADHD. Other research has reported an association between ADHD and IBS.

Researchers are still investigating why these associations exist. They do not mean that ADHD causes DGBI, or that everyone with ADHD will experience gut problems. But it made me look at my own experiences differently and understand why considering the whole person matters.

Why I feel so fortunate

I realise how fortunate I was. Had my psychiatrist not encouraged me to pursue further investigation, I could have spent many more years — perhaps decades — living with the same debilitating pain, unanswered questions and declining quality of life.

I don't know how much longer I could have continued that way.

Sometimes one person noticing one detail, asking another question or encouraging you not to give up can change the direction of your life. In my case, it did.

What I want others to understand

I'm sharing this because I know I'm not the only person who has lived with symptoms that were difficult to explain.

❤️ Normal test results don't mean your symptoms aren't real.

❤️ ADHD can affect more than the things we traditionally associate with it.

❤️ The gut and brain are connected, and that connection matters.

❤️ Sometimes the missing piece of the puzzle changes everything.

❤️ A health professional who looks at the whole person can make an enormous difference.

❤️ Keep asking questions. Keep advocating for yourself. You deserve to be heard.

If you have ongoing gut symptoms that are affecting your life, keep talking with your doctor and ask whether further assessment or a gastroenterology referral may be appropriate. New or worsening symptoms such as unexplained weight loss, vomiting, bleeding or difficulty swallowing need prompt medical attention.

To the people who changed my life

To my wonderful brother: thank you for suggesting ADHD. I will always be grateful that you saw something I hadn't yet recognised. You helped set me on a path that changed my life.

To my psychiatrist: thank you for your knowledge, your holistic approach and for encouraging me to keep pursuing answers about my physical health. Your contribution went far beyond an ADHD diagnosis.

And to anyone still searching for answers: please don't give up on yourself. You know what you are experiencing. You deserve to be heard, investigated and supported.

This is my story. For 15 years, I knew something was wrong. Now I finally have a better understanding of what was happening.

IT WASN'T IN MY HEAD. ❤️

This is my personal story, not medical advice. Please talk to your GP or specialist before starting, stopping or changing any treatment.

Sources

← Back to the home page