I have a rare disorder that makes me stink of rotting fish — it’s ruined my life

Carmen barely leaves the house because of the condition (Picture: William Lailey/SWNS)

No matter how many times Carmen Davies showers, sprays perfume or brushes her teeth, she can’t mask the odour coming from her body.

In 2023, the 29-year-old, was diagnosed with trimethylaminuria (TMAU), a rare condition believed to affect around 100 people in the UK.

Also known as fishy odour syndrome, the genetic disorder causes sufferers to omit a pungent scent through their breath, sweat and urine.

Carmen says she will smell within minutes of eating certain foods – including fish and eggs – because her body is unable to break them down.

Although she can’t notice the smell herself, the mum-of-one can see other people’s reactions when she walks past.

But it hasn’t just knocked her confidence — it’s also impacted her ability to find work and even prevented her from attending her cousin’s funeral.

The smell persists no matter how often she showers (Picture: Carmen Davies/SWNS)

Carmen, who is currently unemployed, from Fallowfield, Manchester, says: ‘I live my life having to stay away from people, and that’s led to massive mental health issues.

‘Smelling like rotten fish, rotten eggs, urine and faeces is horrendous – it doesn’t matter how much I wash.

‘I go out wanting to be cautious about other people and feeling guilty about myself standing next to someone.’

Despite this, she’s tried her best to overcome her issues and leave the house more often since having her baby boy, saying: ‘He needs to be outside – so with having a child, I’ve had no other option.’

Although she tries not to take reactions personally, she finds it hard not to be hurt (Picture: Carmen Davies/SWNS)

When people are in her vicinity, they often ask ‘what’s that smell?’. And while Carmen does her best not to take it personally, reminding herself it’s ‘a natural human reaction’, she finds it ‘really hard’.

‘My aim is to try and explain it to other people,’ she adds. ‘It really has altered my way of life in every single way.’

TMAU – which can be present from birth but typically gets worse during puberty – is caused by a mutation in the FM03 gene, which helps break down trimethylamine. Without it, the compound builds up, causing a fish-like odour.

Carmen first realised she had started to smell when she was in college aged 18.

She recalls: ‘There was this one boy that told everybody that I smelled like poo. I thought it was strange, and he was just being malicious to me, so I didn’t take any notice of it.

‘But then I started hearing indirect comments about me from other people – that I needed to have a bath and have a wash. This guy also started to make songs about me on his YouTube channel — he’d nickname me “poo-dle”.’

Carmen started receiving cruel comments when she was in college (Picture: William Lailey/SWNS)

After seeking medical advice, she claims she was initially told it was a mental health related issue.

‘They believed I had a condition where I could smell smells that weren’t there,’ she says. ‘But I shower every morning and keep clean so I went back to the doctors and said I was sure something was wrong. I asked to be referred to a TMAU specialist centre but was told it was really rare and that it was all in my head.’

Carmen refused to be dismissed however, and pushed for answers until she eventually received an official diagnosis.

Unfortunately, there’s no cure for the condition, and symptoms can only be managed through dietary changes. But even though she avoids red meat, green vegetables and processed or frozen foods, Carmen says she will still ‘always have an odour’.

‘Over the years I’ve found that fasting makes you smell worse in the first seven days, but if you continue your fast then your TMAU tends to smell like cinnamon,’ she adds.

‘It was working in the sense that I didn’t smell like faeces and sewage, but I became too thin from not eating enough.’

Her quality of life has been massively impacted (Picture: Carmen Davies/SWNS)

Carmen continues: ‘I don’t have any quality of life — I have to wake up and have this smell every day.

‘I did ballet, singing, and dancing when I was younger, and I’d do anything to be able to do that again.

‘ Family gatherings are out of bounds too. I lost my cousin, and I couldn’t go to his funeral because of it. I really do sit in my house all the time.’

One small comfort has been an online TMAU forum where she was able to talk to fellow sufferers about the issues it causes.

‘We completely understood each other,’ says Carmen. ‘It’s so hard to explain to other people, and I wish the world could be kinder about things.’

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