For months, colleagues kept asking university lecturer Alison Cavanagh whether she had a cold because her nose was constantly blocked.
The grandmother of five paid little attention to the congestion, until one day while at a meal with friends everyone was commenting on the aromas in the restaurant – and she realised she could not smell a thing.
‘Looking back, my sense of smell probably went away gradually over a year or two,’ says 62-year-old Alison, from Manchester. ‘I did eventually go to the GP and they prescribed a nasal spray, but it didn’t make any difference.’
By then she had completely lost her sense of smell – known medically as anosmia. Along with it her sense of taste was dramatically dulled, as much of what we perceive as flavour is governed by smell receptors.
‘Not being able to smell or taste at all was life-limiting,’ says Alison. ‘I completely lost interest in cooking and going out for meals with friends and family.
‘People used to joke that at least I couldn’t notice bad smells, but even not being able to smell my youngest grandchild’s nappies made looking after them more difficult.’
Alison also found that the left side of her nose was permanently blocked. She rarely slept through the night and was left ‘constantly exhausted’.
Eventually, after repeated trips to the GP, she was referred to a specialist and diagnosed with chronic rhinosinusitis – severe, long-term swelling of the nasal lining.
Chronic rhinosinusitis can be debilitating, causing headaches, yellow or green nasal discharge, tooth pain and persistent congestion
Tests also revealed she had nasal polyps – fleshy, non-cancerous growths that can form inside the nose.
After a six-month wait she underwent surgery to remove the polyps – but her sense of smell did not return.
‘I remember cooking dinner one evening when my husband, Andrew, came into the kitchen,’ says Alison. ‘He rushed over to the oven and told me not to move.
‘The hob hadn’t lit properly and I’d filled the room with gas without realising.’
Fed up with living without a sense of smell for 15 years, Alison forked out thousands to undergo polyp removal surgery a second time. She was also prescribed a steroid spray and advised to use a twice-daily nasal wash.
After years of suffering with the condition, she finally turned a corner. ‘I was in the kitchen chopping onions when I realised I could smell them,’ says Alison.
‘I ran into the living room to tell my husband. I was so emotional I was crying – and not because of the onions.’
Experts warn if those with rhinosinusitis do not get early treatment they risk the symptoms becoming severe and long-term, like Alison’s.
‘It often creeps up on patients over time before they take note,’ says Professor Carl Philpott, an expert in disorders linked to smell and taste at the University of East Anglia.
‘It will start with low-grade symptoms, then one day they wake up without the ability to smell.’
Sinusitis is incredibly common, the second most prevalent infectious disease seen by GPs
Alison Cavanagh lost her smell for 15 years after being diagnosed with rhinosinusitis
However, Professor Philpott says early intervention could, for many, prevent deterioration. ‘We now know that, for some patients, dealing with symptoms early can slow progression, so it is important for patients to seek help when they notice a change,’ he says.
Sinusitis is incredibly common, the second most prevalent infectious disease seen by GPs, and can be caused by bacteria, viruses or allergies. It usually leads to congestion, a runny nose, facial pain and a loss of smell.
Most cases last no longer than a week. But for between 5 and 10 per cent of Britons, sinus infections become chronic – continuing for more than 12 weeks.
Chronic rhinosinusitis can be debilitating, causing headaches, yellow or green nasal discharge, tooth pain and persistent congestion.
An even longer-term immune system reaction causes extreme inflammation in the nose, leading not only to constant dripping but to nasal polyps.
These swellings can block the olfactory nerves, which carry scent signals to the brain, causing partial or total loss of smell and taste. And there may be a genetic reason why some people are more likely to develop it.
Research has linked chronic rhinosinusitis to other inflammatory airway conditions such as hay fever and cystic fibrosis, says Mr Vikas Acharya, consultant rhinologist at University College London Hospital.
Nearly a quarter of people with chronic rhinosinusitis also have asthma – five times the rate in the general population.
For those with the polyp form, it is even higher, at 70 per cent.
‘This doesn’t mean that everyone with one of these conditions will develop chronic rhinosinusitis, but there is a genetic predisposition we don’t quite understand yet,’ says Mr Acharya.
‘And, like many inflammatory conditions, sinus disease is on the rise. It is now the commonest condition that I, as an ear, nose and throat surgeon, see day to day.’
Last week, GP and Mail on Sunday columnist Dr Ellie Cannon wrote that she is seeing dozens of patients in her clinic who are bunged up – and it is not cold or flu, but sinusitis.
In response, we were flooded with letters and emails from readers who said they had tried everything to treat the condition, with repeated trips to doctors but no solution.
Research has linked chronic rhinosinusitis to other inflammatory airway conditions such as hay fever and cystic fibrosis
One 84-year-old woman said she has suffered with a blocked and ‘drippy nose’ for four years, yet at an appointment ‘the doctor’s attitude was very off-hand and he said, “What do you expect at your age?”’
Meanwhile, a 74-year-old man told The Mail on Sunday he has been waiting nearly a year to see a specialist, while the condition has left him with a ‘constant bad chest and multiple infections’.
For many, the first port of call is nasal decongestant sprays. But these can do more harm than good if used for more than four days.
Studies show that prolonged use can damage the delicate lining of the nose and trigger a rebound effect known as rhinitis medicamentosa, where blood vessels swell as soon as the spray is stopped.
This can leave patients feeling even more congested than before, and drives a cycle of repeated use and dependence that is difficult to break without medical help.
Research published last month by the Royal Pharmaceutical Society found that 60 per cent of pharmacists believe patients are unaware these sprays should not be used long-term, putting them at serious risk of severe and chronic congestion.
Instead, experts say the best treatment for chronic rhinosinusitis is simple: saline nasal rinsing.
Also known as nasal douching, it is part of standard advice for patients with the condition. But poor technique and lack of adherence mean it is often ineffective.
‘Patients are often aged between 40 and 70, living busy lives and they just don’t do it properly or often enough to benefit,’ says Professor Philpott. ‘You need to do it twice a day, every day, and importantly should not stop as soon as symptoms improve, as it often returns.’
A 2016 Cochrane review found nasal rinsing improves symptoms and quality of life within three to six months.
To do it properly, experts recommend using a saline packet or mixing half a teaspoon of salt and half a teaspoon of bicarbonate of soda with a pint of tepid, previously boiled water.
The liquid is then put into a large syringe, or sinus rinse bottle, such as those made by NeilMed and sold in pharmacies. Patients are advised to block one nostril and sniff the solution into the other, allowing it to run out.
Rinsing should continue until no debris appears, before repeating on the other side. If nose drops have been prescribed, they should be used after rinsing. However, for some people the condition will deteriorate anyway,’ says Professor Philpott.
Alongside rinsing, patients are typically given nasal sprays containing steroids, antihistamines and steroid tablets. If these fail, surgery may be offered.
Around 50 per cent of patients do not respond to steroids, which work by reducing inflammation, and require an operation known as functional endoscopic sinus surgery.
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The procedure is carried out under general anaesthetic and involves widening the natural drainage pathways of the sinuses and carefully remove any polyps or inflamed tissue, including their roots.
The aim is not only to clear blockages but to restore airflow and allow medicines such as steroid sprays to reach the affected areas more effectively afterwards.
The operation is performed entirely through the nostrils, leaving no external scars.
Most patients go home the same day, but recovery can take several weeks and often involves discomfort and the need for regular nasal rinsing and follow-up care.
As with any surgery, there are risks, including bleeding, infection and, rarely, damage to surrounding structures such as the eye or skull base.
Research shows that about 10 per cent of patients will need repeated operations because the underlying inflammation continues even after polyps are removed.
In these cases, the tissue can regrow over time, gradually blocking the sinuses again.
Now these patients may be offered a lifeline – an innovative new treatment called dupilumab.
Last month, the NHS spending watchdog, the National Institute for Health and Care Excellence (NICE), approved the drug, clearing the way for rollout. The therapy targets parts of the immune system driving inflammation, calming the response.
‘As a twice-weekly injection, this will be transformative for patients with severe disease where surgery and steroids have failed,’ says Professor Philpott.
But charities warn access to care remains a problem.
‘There has long been an issue with patients with chronic rhinosinusitis being referred appropriately or accessing effective long-term treatment,’ says Duncan Boak, of the charity SmellTaste. ‘There is still an attitude of “you’re a bit bunged up, just have a nasal spray”, which for many offers only temporary relief.’
He urges patients to advocate for themselves, adding: ‘We encourage people to make the case for the impact on their life – particularly loss of smell, quality of life, and the potential dangers it can cause.’
Could a ‘snot transplant’ be the answer?
Scientists are developing a radical treatment for people suffering from debilitating congestion – more snot.
A Swedish research team is trialling a mucus transfusion for patients with treatment-resistant chronic rhinosinusitis.
In a 2022 study, 22 people with polyp-free chronic rhinosinusitis were recruited along with healthy donors – mostly spouses or friends of the recruits.
They first treated the recipients with antibiotics to create a clean slate for the new micro-organisms, then rinsed the donors’ sinuses with saline solution and collected it. On five consecutive days, they rinsed the recipients’ noses with the donor snot.
Three months later, 16 of the 22 recipients reported improvements to their health and quality of life, according to the results published in the International Forum of Allergy and Rhinology journal.
‘A snot transplant works by lining the inflamed area of the sinus and allowing it to heal,’ says consultant rhinologist Mr Vikas Acharya.
‘The jury’s out because we have so little data, but in principle it has merit – as evidenced by the fantastic results of poo transplants for patients with severe gut conditions.’