Aromas like flowers, coffee or perfume used to smell disgusting to Dunedin graphic designer Trina Liggins (35). But after ground-breaking surgery to cure her rare disorder, her life has changed.
Getting a bunch of roses used to make me want to throw up. To me, the smell of flowers wasn’t sweet or romantic. Instead, they had the scent of the most disgusting rotting thing you can imagine.
And it wasn’t only roses that smelled awful to me. The aroma of fresh coffee, a whiff of perfume, chocolate or even fresh air smelled awful. The stink was so overwhelming at times that I was afraid to go out because I might start retching or even be sick.
The thing is, it was all in my head – or rather, in my nose. I suffered from a condition called Phantosmia, which means everything smells horrible, even things that usually smell lovely.
oost of the time I was fine but then the condition would be triggered by something as simple as blowing my nose, sneezing or getting a cold. It was utter misery at times.
I remember the first time it struck. I was 18 and working as a data-entry operator at otago University when my nose was filled with a horrible rotten smell. When I mentioned it, my colleagues gave me funny looks. No-one else in the room seemed to be affected but I was trying to keep from retching.
The smell lasted for a couple of hours and I initially put it down to a sinus infection. Soon, the bad smells affected me monthly, then weekly until, finally, I was experiencing them every day. This lasted for the next 17 years.
oy symptoms had the experts stumped. The nasal spray and steroids they prescribed didn’t make much of a difference and it was chilling to think that I was going to deal with this condition for life.
one specialist found it hard to appreciate how devastating my condition was. I’d been referred to him by my GP and had waited nearly a year for my appointment – only for him to say, “How much of a problem is it?” I had waited so long to see him and he acted like I was wasting his time.
He also suggested my problem might have something to do with my tonsils and that I needed to have them removed. But when the familiar odour hit me the day after I had a tonsillectomy, I cried my heart out. “Why me?” I wailed. “What have I done to deserve this?”
I’d done everything I could to try and get rid of it and I was at the end of my tether. At my lowest times, I’d get so depressed I wanted to crawl under my bed and never come out. I’d spent years researching my condition on the internet when one day, quite by chance, I stumbled upon an American website where people spoke of their experiences of smell disorders.
I read someone’s account of their triggers and what they could smell, and a light went on in my head. “That’s me – that’s what I’ve got!” I thought, excitedly. I felt as if a huge burden had been lifted from my shoulders.
To find out my condition had a name – Phantosmia – and that there were a few others around the world who also had it came as an enormous relief. My GP was very supportive. He rang specialists in Auckland for information and advice and prescribed different drugs in the hope they would help me.
Then a few months ago, my specialist at Dunedin Hospital told me I might be able to have an operation at Wakefield Hospital in Wellington that could cure me. But the hospital had to apply for funding for the $17,000 surgical procedure.
I thought, “This will be another long process” – but to my utter surprise, Wakefield Hospital called a few weeks later to tell me that my surgery had been approved. I did a happy dance around the office when I heard the news.
I had the three-hour operation on 29 November 2005. The surgery was done using a tiny telescopic tool and I was allowed to go home a week later.
Basically, the surgeon cut the smell connections between the affected right side of my nose and the part of the brain dealing with smell. The idea is that the normal left side of my nose will take over.
It hasn’t all been smooth sailing. I’ve felt a bit ill and have had some headaches but it is worth it to be able to walk into a café and enjoy the smell of fresh coffee without gagging or turning away in revulsion.
The specialist says it will take a year to know whether the operation has worked permanently, so I’m keeping my fingers crossed. This time, hopefully, I will be enjoying the sweet smell of success after 17 rotten years. As told to oere oulu
