I Smell Like Fish, Rotten Eggs, Urine, and Feces: My Journey With a Rare Condition

Regardless of how frequently Carmen Davies takes a shower, sprays perfume Or when she brushes her teeth, she can't hide the odour coming from her body.

In 2023, the individual, aged 29 years old, was diagnosed with trimethylaminuria (TMAU), a rare condition thought to impact approximately 100 individuals in the UK.

Also called fish odour syndrome, this genetic condition leads to sufferers experiencing an unusual smell. to exclude a strong smell via their breathing, perspiration, 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.

Even though she isn't aware of the odor herself, the mother of one notices how others react as she passes by.

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.

Carmen, an unemployed resident of Fallowfield, Manchester, shares her experience: "My lifestyle involves avoiding interactions with others, which has resulted in significant mental health problems."

'Being smelly like rotting fish, stinky eggs, urine, and feces is terrible – no matter how much I cleanse myself.'

'I step out being careful around others and feel guilty when I stand beside them.'

Even so, she has made an effort to conquer her challenges and venture out more frequently after giving birth to her baby boy, mentioning, “He needs to experience the outdoors—so because of my child, I have had no choice but to go out.”

Whenever people are near her, they frequently inquire about 'that smell'. Although Carmen tries her hardest not to be affected personally, she reassures herself that it's just 'a typical human response', but admits to finding it 'quite difficult' nonetheless.

“My goal is to attempt explaining this to others,” she says additionally. “It truly has transformed every aspect of my lifestyle.”

TMAU – often appearing since birth but usually intensifying during adolescence – is triggered by a mutation in the FM03 gene, responsible for breaking down trimethylamine. In its absence, this substance accumulates, leading to a strong fishy smell.

Trimethylaminuria explained

Based on information from Metabolic Support UK, trimethylaminuria — which can also be referred to as fish malodor syndrome, fish odor syndrome, stale fish syndrome, TMAU, or TMAuria — leads to an emission of 'a powerful smell that might be likened to rotting fish, eggs, etc.,' through sweat, urine, breath, or vaginal secretions. rubbish , or urine’.

Apart from this aspect, there are no additional physical symptoms, and the condition does not impact life expectancy. Nonetheless, the charity’s website explains: ‘Many people with this disorder feel embarrassed and isolate themselves, or they may develop mental issues such as depression and anxiety.’

While TMAU is rare, ‘some experts believe that the disorder may be under-diagnosed, possibly due to people not seeking medical support for mild symptoms, or some cases being misdiagnosed.’

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”.’

Following her consultation with a doctor, she says she was first informed that it might be linked to a mental health concern.

They thought I had a condition where I imagined odors that didn't actually exist," she explains. "However, I maintain good hygiene by bathing daily, so I returned to the doctor insisting that something wasn't right. I requested being sent to a TMAU specialty center, but was informed that this condition is extremely uncommon and that my issues were likely psychological.

Carmen declined to be ignored and continued pressing for information until she finally obtained an official diagnosis.

Sadly, there is no known cure for this condition, and symptoms can only be controlled via adjustments in diet. Despite avoiding red meats, green veggies, and processed or frozen meals, Carmen mentions that she will 'always emit some sort of smell'.

'Over time, I've discovered that during the initial seven days of fasting, you may smell more pungent. However, if you persist with your fast, your TMAU odor often takes on a scent similar to cinnamon,' she explains.

'It functioned as intended because I wasn't smelling like feces and sewage, but I ended up becoming too skinny due to insufficient food intake.'

Carmen goes on: 'My quality of life is non-existent—I have to start each day with this odor surrounding me.'

'I engaged in ballet, singing, and dancing during my youth, and I would jump at the chance to do those activities again.'

'Family get-togethers are also not allowed. I lost my cousin, and I wasn't able to attend his funeral for this reason. I truly just stay at home 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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