The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
RECENT POSTS
Categories
Tags
Amélie art Croatia EDS Exploring Finland Food France health hEDS Helsinki Holiday Home human-rights Hvar Ileostomy Infection informaion informed-consent Island law Lido life Lifestyle Mallorca Medical Mesenteric Ischemia Nostalgia Pairs Paris PoTS Recipe Rest rights Sardinia Sea Sun Surgery Swimming travel Undiagnosed infection Visceroptosis
Like many patients, I have had to fight for a diagnosis. Like many patients, I only have my diagnosis after being failed and flighting for an answer and for healthcare.
From 2016 I experienced GI symptoms which worsened over time. I had discomfort, distension and pain in my abdomen. Both medical and nutrition professionals gave misplaced reassurances that a change of diet would resolve symptoms. There was a clear lack of diagnostic approach. I found out after my diangoses that there is a systemic problem in GI healthcare; GI symptoms are presumed to be about diet, rather than potentially a medical issue which requires intervention.
Over the years I dutifully exhausted all dietary and lifestyle recommendations, as this was being touted and as I was keen for relief. However, nothing made a difference. Like many patients in similar circumstances, I was disbelieved when I reported that the suggested changes did not work. Disbelieving patients is another issue in healthcare, where when the patient reports that the consultant’s suggestion did not work, the consultant rejects this in favour of holding the view that the patient has failed to following the instructions or, for axample, it did not work because the patient is ‘stressed’. I was told in one appointment, when I relayed that nothing had improved, that I “must be stressed”. Some also simply do not know what ton do. In a one follow up GP appointment I reported that ingesting mint oil, which she had recommended, had not worked. She just stared at me.
Over the years the situation worsened.
In 2019, I went through another basic appointment, with a NHS gastroenterologist who’s only consideration that perhaps I did not drink enough water. After years of ensuring nutrition and lifestyle was as optimal as possible, including the important fluid intake, the non-medical, non-diagnositic, assumption that there is no underlying issue at all, this was a waste of time.
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, and years had already gone by.
Previous to this situation, I had considered private healthcare to be something that only wealthy persons used, and only due to shorter waiting lists and/or accessing fancy hosptials. Over the following years I understood that this was incorrect, as many people are forced to go private, due to being starved of diagnostics or appropriate interventions. I was one of them.
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, which you can read about here.
A long-term infection was diangosed and treated, resulting in severe fatigue resolving, in 2021, which you can read about here.
Visceroptosis and mesenteric ischemia was diagnosed in 2021, which you can read about here.
The EDS Lass 