Sofia Stidham was just 21 when she started to notice a “sharp ache” in her jaw which wouldn’t go away.
“I tried to ignore it,” the now 22-year-old from London told The Independent. “But every time I ate, or opened my mouth, it was so, so painful.”
Ms Stidham said the pain was so deep in her jaw that she thought it must be an issue with her wisdom teeth.
“But I went to two different dentists who both told me they couldn’t see any issues,” she said. “I almost felt like I was making it up, but the pain was so sharp, so severe, and so constant — I’d rather break my foot than experience this pain.”
Ms Stidham was so desperate for answers, she eventually turned to a private maxillofacial surgeon, a doctor who specialises in the face, jaw, and neck.
It was then, after multiple X-rays and an MRI, that she was told she had stage four TMJ – something she had never heard of.
Temporomandibular joint disorder, often referred to as TMJ, affects the jaw joint and its surrounding muscles. Symptoms include jaw or facial pain, clicking or grinding sounds, headaches, and locking.
The condition affects up to 6.7 million Brits in the UK, with women being twice as likely to experience symptoms when compared to men, according to the NHS. The disorder is categorised from stages 1 to 5, ranging from mild jaw pain to arthritis of the jawbone and extreme facial pain at its worst.
Dr Amir Amini, a maxillofacial surgeon at 107 Harley Street in London, explained: “The onset of the condition is most often triggered by stress, where those affected either clench or grind their teeth subconsciously.”
The constant tension causes extreme pain in the muscles around your jaw, and can radiate to the inner ear, temples, neck, and even the back.
“Recently, I’ve seen the number of young women seeking treatment for TMJ spike: I’m now dealing with about 80 female patients experiencing TMJ-related pain every month,” Dr Amini added.
“Although we don’t know why young women are experiencing this more, the stresses of everyday life are definitely a primary contributor to this increase.”
While there is no “quick fix”, a popular treatment to relieve symptoms is Botulinum Toxin-A – branded as Botox – a purified neurotoxin that also acts as a muscle relaxant.
More commonly used in cosmetic contexts, Botox’s muscle relaxant properties are typically used to prevent wrinkles. But for cases of TMJ, injecting Botox into the muscles around the jaw partially paralyses them and prevents them from clenching too tightly, which can ease symptoms.
Ms Stidham said: “When I was offered Botox, I was shocked. It’s still seen as a cosmetic treatment, and I was thinking, ‘What if my face completely changes?’”
But with “no other options,” she chose to go through with it. “Honestly, it was life-changing. It helped with the pain in a way nothing else had,” she added.
For Maryam Osman, 28, her TMJ diagnosis came about by chance, after months of experiencing headaches and jaw pain. During a routine dental check-up, her dentist noticed some damage to her teeth, and gave her a mouthguard to stop her from grinding them.
But the tension in her jaw was so strong, it shattered in her mouth just a day later.
Ms Osman, who is from Surrey, told The Independent: “I spent the next two years in chronic pain — my face began to swell up with how much pressure my jaw was under. It was unbearable, and at 24, I had 12 vials of Botox injected into my face.”
Citing how hard it was to access treatment for TMJ on the NHS, both Ms Osman and Ms Stidham chose to seek treatment privately, which can cost upwards of £300.
The lack of information surrounding TMJ continues to be a barrier to young people seeking help, according to the Trigeminal Neuralgia Association (TNA UK), which supports people with severe facial pain.
Aneeta Prem, the chief executive of TNA UK, told The Independent: “We regularly hear from people who have felt frightened, isolated and passed between services before reaching the right help.
“Our survey found that, among those who experience TMJ or TMD [a related condition which causes facial pain], 34 per cent said they had thought about suicide.”
She emphasised the need to raise awareness around TMJ in order to improve access to specialists who understand facial pain.
Ms Stidham concluded: “To me, it’s almost insane how none of the healthcare professionals I visited was able to identify I had TMJ.
“But it also sheds light on how little research we have on health issues that affect women.
“It feels like there is still so much more to be done in advancing female healthcare — TMJ impacts so many women, and at a significantly higher rate than men, yet we know so little about it — it just shows that we still have a long way to go.”
If you are experiencing feelings of distress, or are struggling to cope, you can speak to the Samaritans, in confidence, on 116 123 (UK and ROI), email jo@samaritans.org, or visit the Samaritans website to find details of your nearest branch.
If you are based in the USA, and you or someone you know needs mental health assistance right now, call or text 988, or visit 988lifeline.org to access online chat from the 988 Suicide and Crisis Lifeline. This is a free, confidential crisis hotline that is available to everyone 24 hours a day, seven days a week. If you are in another country, you can go to www.befrienders.org to find a helpline near you.
