This is mainly a rant but I would love some advice or just to be told I’m not alone on this.
I have only got a diagnosis for HEDS but since last April have struggled with my stomach, and I feel like I’m going insane.
My stomach started to hurt insanely bad when I ate, I feel nauseous and full even with a few bites of food I previously could eat large amounts of, but I’m not throwing up, like with most other things with eds some days it’s ok and I barely notice the pain when I eat, and some days I can’t even look at food without feeling sick to my stomach, I’m constantly having heartburn, burping and I’m almost always constipated.
It took me being unable to eat for days in a row for doctors to realise something was off and took over half a year before I was able to see gastroenterology, so far I haven’t had many tests, I’ve had the regular blood works and samples and nothing showed up, I saw my gastro doctor and he suggested it might be a hernia and sent me for an endoscopy.
My endoscopy was about 2 weeks ago and nothing bad had shown up and I’m still waiting to speak to gastro again.
I know it’s only 1 of many tests I’ll get to try find out what’s wrong. But I’m already feeing hopeless. What if they can’t find anything? What if I just have to suffer never knowing what day I can eat and what days I can’t and how long a stomach flare up may last, what if there is nothing that can even minimise the pain? I have no idea what this can be and don’t see many people talking about anything but joint issues when it comes to heds, I feel so lost.