"I was diagnosed with fatty liver disease at 19 and finding Liver UK helped calm me down"

I originally went to the doctor because I was experiencing extreme bloating for two or three days at a time, but it was so bad that my stomach would swell to a point l looked nine months pregnant and none of my clothes fit.  

I was diagnosed with polycystic ovary syndrome and a month later I was having scans and blood tests and my liver function tests were through the roof. I was then diagnosed with non-alcohol related fatty liver disease (now called MASLD). 

My doctor didn’t say what had caused it and didn’t provide much information at all. I’d had an inflamed liver back when I was 14, but nothing else came of that, so to be diagnosed with polycystic and fatty liver at 19 was really scary. I’d just moved away from home, had never heard of fatty liver disease and never thought I would be at risk. What information I got I found myself online and fell into a bit of a rabbit hole. Finding the Liver UK website helped calm me down, I read quite a few of the patient stories and seeing other people with it helped me.  

The only advice I was given was to lose weight and stay fit, but that’s really hard when you’ve got the PCOS on the side. I was dieting, playing netball, doing 10k steps but nothing got the weight off. The doctor also told me to limit alcohol so I felt like I had to stop the social side of uni which was quite isolating for me. I got engaged last year and felt guilty having a drink to celebrate. 

If you’re diagnosed with fatty liver disease don’t be hard on yourself and take things one step at a time

Now every nine months-ish I have a scan and a follow-up appointment with my hepatologist and every time I’m told it’s just getting worse and they tell me to go back and do more exercise.  

I’m making healthier choices, doing at least 10k steps a day and playing netball once a week. I’m losing a bit of weight but nothing drastic, I think it’s the pcos – once you gain the weight it’s really hard to lose it again. I told my consultant and he just said ‘Try’ which I’m doing anyway.  

I’m now 22 and still find it scary, it’s never gone away or been better and every year when I have the appointment I dread what’s going to be said. I feel like I have more information now than when I was first diagnosed, but it still doesn’t feel great.  

If you’re diagnosed with fatty liver disease don’t be hard on yourself and take things one step at a time – I don’t think deep diving into a rabbit hole was the greatest idea – and push doctors for more information because I didn’t do that and I think it would have been very helpful for me.   

I thank Liver UK for their support and information that helped to ground me amongst the fear and uncertainty around my health, and also my partner who is there at every appointment, calming my nerves and helps me to manage and process test results, year in, year out. 

Please do not reproduce or republish the patient stories on this website without our express written permission. If you would like to use this content, please email us at [email protected] to discuss. You can view our full website terms and conditions here.