EoE Treatment in Germany
Hi everyone,
I'm writing this mostly to relieve the acute anxiety I'm feeling right now, but there is a small ask too: if anybody has undergone EoE diagnosis and treatment in Germany, especially at St Hedwig's in Berlin, I would love to know how it went for you and anything to look out for.
Setting the context, I had my first hospitalization through impaction 10+ years ago. I am British and was living in the UK, and after being treated in hospital they just told me to 'chew better' and dismissed my concerns. I had two more impactions due to steak within the same year.
For years, I had no idea what was going on with my body and just felt like I was an idiot and something was wrong me that nobody else in the world would understand. A few years ago I discovered this community and began to understand the disease. I eliminated all dairy, eggs, nuts from my diet and my symptoms got a little bit better. Every once in a while I could eat a chicken breast or even a fillet steak without constant anxiety and stress.
I went on holiday with my wife to the Netherlands and had my worst impaction yet. It was an almond that had snuck into a salad I ordered at a restaurant for lunch. I literally couldn't eat for 3 days before my wife forced me to go to the emergency room in the Netherlands. I received a endoscopy where they retrieved the almond with a net and advised me to seek treatment when I got back from holiday in Germany (which is where I now live). spoilers: I didn't.
I started self-medicating with Fluctisone and that, combined with the dietary restrictions, massively improved my quality of life. That was in 2022, and this year I made it my commitment to myself and my therapist that I would get this properly diagnosed and treated in Germany. Germany is notoriously awful for helping immigrants receive medical treatment. Despite speaking the language, I have been met with dismissal and refusal time after time. Finally, after literally months of waiting and hundreds of emails, messages, Hausartz visits I have a referral for a hospital appointment at St Hedwigs with PD Dr. Schmöcker.
I am so tense and nervous - I don't want my symptoms to be dismissed but I'm also dreading another endoscopy without any sedation. I still have a recurring trauma from the one in the Netherlands.
If you're still reading at this point: thank you. I'll try and update this post on Thursday evening after my appointment.