Carmen Davies, 29, was diagnosed with trimethylaminuria (TMAU), commonly referred to as fish odour syndrome, in June 2023. The genetic condition means Carmen releases a powerful odour from her breath, sweat, and urine because she’s unable to metabolise certain foods such as fish and eggs, producing an overpowering smell shortly after consumption.
Although personally unaffected by the smell, Carmen, from Fallowfield, is painfully conscious of the looks and comments she receives.
Despite daily showers, brushing her teeth and using perfume, she can’t mask the smell and often chooses to stay at home to avoid subjecting others to it. This disorder has dramatically affected her life including her job prospects, and even led her to forgo attending her cousin’s funeral in 2023.
Carmen tries to not let the remarks get to her, but admits it’s an ongoing battle. She shared: “I live my life having to stay away from people, and that’s led to massive mental health issues.”, she told the Manchester Evening News.
“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.”
She adds a positive note though, stating: “I have a beautiful baby boy though and any issues from my condition have to be overcome.
“He needs to be outside – so with having a child, I’ve had no other option to try and take myself out of my comfort zone at times.
“It’s a natural human reaction to go ‘oh, what is that smell?’ so I try not to take it personally, but it is really hard. My aim is to try and explain it to other people.
“It really has altered my way of life in every single way.”
The troubling symptoms are due to a mutation in the FM03 gene, responsible for breaking down the compound trimethylamine, which accumulates and produces the peculiar smell.
Carmen first noticed something was amiss while at college when she was cruelly taunted by her peers: “It all started when I was about 18. There was this one boy that told everybody that I smelled like poo – I thought it was strange, and 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.”
She recalled, “This guy then started to make songs about me on his YouTube channel – he’d nickname me ‘poo-dle’. “.
After suffering in silence, Carmen sought professional help where she was initially dismissed as having mental health issues.
With only about 100 identified cases in the UK, Metabolic Support UK suggests the condition could be going undiagnosed or misdiagnosed.
Carmen said: “They believed I had a condition where I could smell smells that weren’t there – 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 – I was told it was really rare and that it was all in my head.”
Her persistence paid off as she explained: “I wouldn’t leave it and kept going back to doctors as I couldn’t do anything without people commenting about how I smelt.
“I eventually had an official diagnosis from my doctor in 2023.”
Carmen shared details about managing her symptoms: “You can only manage your symptoms by food – I have to avoid red meat, anything processed or frozen, green vegetables – you’ll 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.”
Despite finding a method that mitigated the odour, Carmen faced new challenges: “It was working in the sense that I didn’t smell like faeces and sewage, but I became too thin from not eating enough.
Carmen struggles daily with her condition and avoids family and social gatherings.
She said: “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 off bounds.
“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.
“I did meet someone on a TMAU forum online, and we completely understood each other – it’s so hard to explain to other people, and I wish the world could be kinder about things.”
