Hello all, hope all is going well, I’m writing this post to look for some advice, I’m pretty lost as to what my next steps are and I’m not particularly hopeful about my future.
My history: in mid-2023 I had some dodgy food which seemed to have induced late onset R-CPD-like symptoms. 2 years later and after many inconclusive tests, therapies and treatments by GI doctors, I was eventually led to an RCPD specialist to undergo my first Botox treatment in September 2025 (100u GA). Unfortunately, despite the surgery resolving gurgling sounds and a few days of “normal-sounding burps” it was ultimately unrelieving with significant bloating and nausea continuing, especially relative to my life before 2023.
I next had an in house 100u surgery accompanied with balloon dilation in October 2025 which also didn’t turn out fruitful, although this time not even with transient symptom relief either.
Then in Late January this year, I had another GA surgery with 200u of Botox. Like the first one, despite some hopeful deep burps within the first week or two, nothing seemed to change.
I just had a follow-up with my doctor yesterday to discuss next steps, but it’s clear both him and I realise there is little left as to what to do. He doesn’t seem keen on a myotomy but also acknowledges more Botox will continue to be an expensive and unresolving intervention. I cannot understand why I have to be the anomaly of the anomaly for this obnoxious condition.
While it is beyond any doubt that I at least have an RCPD adjacent problem (with Botox at least causing some changes in burping behaviour, gurgling sounds, and causing the appearance of micro-burps), there might be a few factors I suspect that have influenced my refractory nature
- Late onset at 20 years old
- Residual burping ability still present (though can only result in “shallow” burps that almost sound “strangled” due to high pressure of me forcing them through, sometimes accompanied with regurgitation from the pressure
- Can occasionally induce larger/deeper burps if I send a “probe” of air down my oesophagus, though often leads to more discomfort if the probe gets stuck
From what I can tell this doesn’t fit the profile of a typical RCPD patient.
I don’t think I can accept living like this forever. I’m really struggling to understand what I did to deserve this condition. There doesn’t seem to be much more to do. I am booked in for pH impedance testing but it just feels like I’m delaying the inevitable conclusion that my condition isn’t treatable.
If any others are/have been in a similar situation please let me know your stories/thoughts/advice. If you think there is something I should try/look into please let me know. Sorry for the long post and thank you for your time if you’ve read this far