Like many others, Belinda lived with unexplained symptoms for years before receiving a diagnosis with MASLD. What followed was a challenging but inspiring path toward understanding, advocacy, and self-care. Her experience highlights the importance of early detection, and the vital role that the British Liver Trust plays in offering support. Thank you for sharing your story, Belinda.
For the best part of two years before my diagnosis, I felt unwell but couldn’t put my finger on it. While I didn’t feel it warranted an urgent GP appointment, I felt extremely fatigued, which was very unusual for me, frequently nauseous, and had an aching pain in my upper right abdomen that came and went. The exhaustion led to me withdrawing from my normal life — skipping time with friends, avoiding sitting in my garden on sunny days, and making poor food choices simply because I was too tired to cook. I’d come home from work and head straight to bed. It wasn’t just tiredness. It felt like my body was shutting down.
I noticed my weight started to increase and although I knew I was putting weight on, I simply didn’t have the motivation to do anything about it. It was a vicious cycle that I could clearly see was negatively impacting my health, but physically I couldn’t do anything about. My head was saying, “Belinda, what’s wrong with you, snap out of it,” but no matter how many times I told myself that, I just couldn’t.
Eventually, I saw my GP. My symptoms were attributed to menopause, and I was prescribed HRT. But the HRT caused some vaginal bleeding, which led to a gynaecology referral and an investigation in the form of an ultrasound scan. That’s when fate intervened. A miscommunication meant the sonographer scanned my abdomen instead of performing a transvaginal scan, and she spotted a “fatty liver.” This report went back to my GP who called me in to discuss further. I remember they said, “Your liver looks a bit fatty, but don’t worry because most of the population probably has a fatty liver. We just need to check your cholesterol, blood pressure and I’ll make a referral for a liver scan.” My blood pressure was through the roof, so tablets were prescribed. Cholesterol came back high and so a discussion was had around diet, and I waited for the liver scan. I didn’t know what a liver scan involved, and I wasn’t particularly worried because I’d already been told, “most of the population probably has a fatty liver.” However, in the back of my mind, I thought of my mum who had died at the age of 46, of liver cancer 35 years ago. A few alarm bells started to ring.
I was referred for a FibroScan, which I attended alone, not overly concerned. I expected to be told to lose a bit of weight. Instead, I received a result of 13.3kPa and a CAP score of 400 — placing me at the higher end of S3 steatosis. When I said, “But I don’t drink alcohol,” I learned that liver disease can have many causes. I was told my results warranted an onward referral to a Gastroenterologist and was advised to “take care of myself” and wait for my appointment with the Consultant. Still, it didn’t really sink in until I started to Google!
Thankfully, I found the British Liver Trust website and called their nurse helpline.
Thank goodness I did, because it was thanks to those wonderful nurses (I phoned a few times to be honest!) that I learned more about my diagnosis and what to expect next — what questions to ask the Consultant, what food types to avoid, dietary information, how to manage my fatigue, etc. But more importantly, they helped me put things into perspective and gave me reassurance and hope.
Still, those early days were tough. All I could think of was my children — I thought I was going to die just like my mum did. She only lived three weeks following her diagnosis of liver cancer, and I suppose I was triggered. It was emotionally difficult, trying to stay positive, not focusing on the negatives. I also, weirdly, felt some relief, knowing that all the symptoms I’d been experiencing were now explained and that maybe I could focus on getting better, getting my life back to how it was.
I had a referral to a Consultant Gastroenterologist at my local hospital. I was really looking forward to speaking with the doctor, I couldn’t wait to get some answers and find out how they were going to help care for me. My appointment came quickly, and I took my daughter along with me this time because I knew I’d forget to ask certain questions or maybe not retain important information. I was very disappointed. I was told that there was no “cure” for my liver disease but “there are some new medications that have been approved over in the States, although they’re not likely to be approved over here for about another year or so, so if you’re still around then, I’ll consider prescribing you one.” He even said that the symptoms I was experiencing could be due to “anxiety.” At this point, I thanked him for his time and left the room… furious!
The first thing I did was go on a diet, cutting out all ‘unhealthy’ foods. Having said that, I think I won’t be the only one to say that navigating this is difficult. What can I eat? What can’t I eat? Whilst ensuring you eat enough protein and complex carbs, but at the same time, lose weight and don’t go too long in between meals, eat small but regularly, eat a Mediterranean diet, take a snack to bed, etc. I know my water intake suddenly increased tenfold! A few coffees a day (not too late in the afternoon). I also reduced pain medication that I take for osteoarthritis – I’m conscious of everything that goes into my body. I’ve never consumed alcohol so that’s not something that I needed to take into consideration. I’ve tried to be more active, but that’s a slow process as I’m waiting for knee surgery, and so trying to hurry that along so I can get out walking again – I used to love to walk! Slowly but surely, but trust me, I’m trying everything possible to get better. Since June 2024, I’ve lost nearly four stone, lowered my blood pressure and cholesterol, and am starting to feel hopeful again.
I don’t think I particularly look unwell (although, I must admit that due to my fatigue, I’m not always dressed to the nines like I’d normally be – it just takes too much effort these days), so people assume I’m okay, when I’m not. I plan my days more and try to pace myself throughout the working day. I recognise that I can’t rush anymore and need to be more methodical with everyday activities. I tend to say “no” to people more, rather than pushing myself outside of my physical limitations – trying to mask can be hard work! I think I’ve just realised that it’s about self-preservation and I need to prioritise my health before anything else.
The British Liver Trust continues to be a huge source of support. I regularly attend the MASLD online support group meetings – they’ve helped me feel less alone as it’s comforting to speak to other people in similar circumstances. Liver disease can be invisible, isolating, and misunderstood, and stigmatising, but in that space, I feel seen and supported.
I now know the importance of listening to your body. If something doesn’t feel right, don’t ignore it. Listen to your instinct and speak with your GP. Push for answers. If you’re someone who’s just been diagnosed, please don’t panic, phone the British Liver Trust helpline – they are amazing! They were my lifeline in those early, scary days.
Inspired by my own journey, I’ve been working closely with Public Health colleagues and Community Liver Specialist Nurses to raise awareness locally. This has included, helping to organise a liver health event in my local area offering free FibroScans to more than 600 people – potentially saving lives and breaking the stigma.
To anyone just starting their liver health journey: please don’t panic. You are not alone. There is support, and there is hope.
Update: Following the liver health event on January 31st, 2025, I unfortunately fractured my shin in a fall at home. To complicate matters further, just a couple of weeks later, I also underwent emergency breast surgery. While navigating all of this, I feel there were some missed opportunities in my care, which may have been influenced by the complexities of managing liver disease, particularly how my body responded to antibiotics. As a result, this series of events has set me back, further reducing my mobility and introducing additional challenges during my recovery from the breast surgery. Two months later, my wound still requires ongoing dressing and management and still using crutches to aid my mobility. However, despite these challenges, this experience has only strengthened my commitment to raising awareness and advocating for a greater understanding of liver disease in the healthcare system.
