I stink of rotting sewage but I can’t smell it – I can’t get a date, don’t have any friends and avoid family dos
DESPITE showering daily, brushing her teeth and spraying perfume, Carmen Davies' rare disorder leaves her smelling like ROTTING SEWAGE - and it's so bad she even avoided a relative's funeral.
The 29-year-old was diagnosed with trimethylaminuria (TMAU) back in June 2023.
Also known as fishy odour syndrome, the genetic disorder causes sufferers to emit a pungent scent that affects the 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 Carmen can't notice the smell herself, she can see other people's reactions when she walks past.
Carmen is unable to mask the odour - so she resorts to staying at home so as not to inflict the stench on anyone.
She says the condition has stopped her from finding work and even prevented her from attending her cousin's funeral in 2023.
Carmen says she tries not to take it personally when people notice how she smells, but often has to deal with people audibly questioning what the smell is.
The mum-of-one, who is currently unemployed, from Fallowfield, Manchester, said: "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.
"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."
Carmen has a young son from a past relationship but is currently single and says dating is not an option for her.
Relationships these days are non-existent, including friendships.
She explained: "It does affect relationships, as obviously you don't want to be around anyone with this smell.
I don't have friends at all. I just stay with my child
Carmen Davies
"I've accepted that I don't have that element of normal life.
"I just live a different life from other people, so there are certain things like dating that don't apply to me. It's just too much of an issue for me.
"Same for friendships. I don't have friends at all. I just stay with my child."
The condition 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 at college - with reports suggesting the disorder may become worse during puberty.
She said: "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.
I don't have any quality of life - I have to wake up and have this smell every day
Carmen Davies
"This guy then started to make songs about me on his YouTube channel - he'd nickname me 'poo-dle'. "
Carmen eventually sought medical advice - though claims she was initially told it was a mental health-related issue.
According to Metabolic Support UK, only around 100 people in the UK have been identified with the condition, and it may be underdiagnosed and 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.
"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.
"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.
Trimethylaminuria, also known as fish odour syndrome, is a metabolic disorder where the body is unable to effectively break down trimethylamine (TMA), a compound produced during the digestion of certain foods.
This buildup of TMA results in a strong, fishy odour in breath, sweat, and urine.
The condition occurs due to a problem with the FMO3 gene.
The most noticeable symptom is a persistent fishy odour, which can be described as smelling like rotten or decaying fish.
The intensity of the odour can vary, and some individuals may experience it more strongly during certain times, such as before or during menstruation, or when stressed.
The odour can be present in the breath, sweat, urine, and vaginal fluids.
There's no cure for the condition but there are several management strategies to help reduce the symptoms.
These include dietary changes, medications, supplements, and adjustments to personal hygiene.
People with the condition should avoid trimethylamine precursors. This includes seafood (especially shellfish and marine fish), eggs, beans, peas, peanuts, and liver.
Activated charcoal can help absorb trimethylamine in the gut, and riboflavin (vitamin B2) might help enhance residual FMO3 enzyme activity in some individuals.
Using acidic soaps and body lotions can help convert trimethylamine on the skin into a less volatile form.
Short courses of antibiotics can help reduce the number of bacteria in the gut that produce trimethylamine.
Some individuals may experience anxiety or depression related to trimethylaminuria, so it's important to seek mental health support.
"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.
"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."
thesun
