For six years, 20-year-old Caitlin Jones from Sheffield, South Yorkshire, was unable to burp. Every attempt produced only a gurgling sound, causing her such embarrassment that she avoided social gatherings. The change first became apparent in 2020 when she returned to school after online classes during lockdown, feeling that everything had become completely different.
A Rare Condition Discovered Online
Caitlin recalls: 'I went back to school with anxiety, and I realised I wasn’t able to burp. I had gurgling in my throat, pressure in my chest and throat, nausea after eating or when waking up, and if I’d been drinking carbonated drinks, I got more gurgles, and flatulence.' She often had to leave meals with friends or sit in the car due to the embarrassing gurgling sounds.
Initially turning to the internet for answers, she found a video about a rare condition called retrograde cricopharyngeal dysfunction, also known as 'no-burp syndrome.' Recognizing all the symptoms, she shared her discovery with family and friends, who were shocked by its unusual nature but became understanding of her struggle.
Medical Journey and Diagnosis
In October 2020, at age 15, Caitlin booked an appointment with her GP, discussing both her inability to burp and her anxiety. However, she alleges her concerns were not taken seriously. 'It really upset me when I left the doctors that they didn’t believe me – I knew something wasn’t right with me,' she says.
According to Yale Medicine, retrograde cricopharyngeal dysfunction occurs when the cricopharyngeus muscle fails to relax, preventing air from exiting the stomach and oesophagus. Symptoms include inability to burp, abdominal bloating, gurgling sounds from the neck and chest, and excessive flatulence. The cause is unknown, and for most patients, it is lifelong. However, a 2020 study found that over 99% of patients who received Botox injections into the neck could burp, with effects lasting three to 12 months.
Private Treatment and Botox Injections
After three years of managing symptoms alone, Caitlin opted for private treatment in 2023. She was diagnosed with the condition she had found online and received 50 units of Botox injected into one side of her cricopharyngeal muscle, costing £800. Unfortunately, this initial dose did not work.
Reflecting on the emotional toll, she says: 'The first couple of years after I found out I had it, my anxiety was through the roof, and I didn’t leave the house. But I slowly learnt how to deal with it. I had to go into a quiet space to try and calm down and control it.'
Second Round of Treatment Brings Relief
Last month, Caitlin pursued another round of treatment, this time costing £1,000 for 100 units of Botox—50 units on each side of her throat. The procedure was performed on May 7, and since then, she has burped three times, marking the first burps since 2020. 'I had a small burp, then a normal one and then one lasted five seconds,' she shares.
While the relief is significant, Caitlin acknowledges that this is not a permanent fix, as the condition is lifelong for most people. She notes that the condition may be linked to puberty when muscles are changing, which aligns with her experience. She hopes to continue managing her symptoms and encourages others with similar issues to seek help.
