The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
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Like many patients, I have had to fight for a diagnosis. While it is wrong, like many patients, I only have my diagnosis after being failed and flighting for an answer and for healthcare.
From 2016 GI symptoms had started and worsened. I had discomfort and pain in my abdomen, which was distended. Both medical and nutrition professionals both gave false claims and misplaced reassurances that change of diet would resolve symptoms. There was a clear lack of diagnostic approach. A systemic problem in healthcare became clear; GI symptoms being presumed to be about food/diet, rather than a medical issue which requiring intervention.
Over the years I dutifully exhausted all dietary and lifestyle recommendations, but nothing made a difference. Like many patients, I was disbelieved when I reported that the suggested changes did not work. Over the following years the situation worsened.
In 2019, after another basic appointment with a gastroenterologist (who’s big idea was maybe I did not drink enough water), my family and I acknowledged that the NHS systems and lack of diagnostics were a failure, and we were forced to seek healthcare privately. Symptoms were severe and effecting every area of everyday life.
Thankfully, due to our persistance, scientific background allowing us to research, and being fortunate enough to have some money (following being forced to seek private healthcare), I did get diagnoses in 2020 which changed everything…
EDS was diagnosed in 2020, which you can read about here. PoTS was also diagnosed in 2020.
Visceroptosis and mesenteric ischemia was diagnosed in 2021, which you can read about here.
The EDS Lass 