The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
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The EDS Lass writes about life with EDS, articles on…
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Below is a chronological summary of my medical journey to diagnoses of EDS and POTS, and GI and vascular issues (visceroptosis and mesenteric ischemia), as well as ongoing medical issues. The summary is kept updated.
Childhood & a false denial of EDS diagnosis
Symptoms of back pain and joint hypermobility impacted school life. I had the chance of a timely diagnosis when my family and I were made aware of EDS. However, I was referred to a consultant who was annoyed by the mention of EDS and denied it, and my family were given false reassurances that there was nothing wrong.
Lung collapse at 20
I had a spontaneous pneumothorax (lung collapse). One evening I experienced chest and back pain. The ambulance crew falsely assumed me nothing was wrong; I was told “don’t worry love, it is just a panic attack“. At hospital I waited for over an hour struggling to breath. When staff realised it was a lung collapse they rushed to insert a chest drain. I was in hospital for 4-5 days. Despite spontaneous pneumothorax being an indicator of EDS, it was not considered and no diagnosis was made.
Severe GI symptoms
From 2016 GI symptoms started and worsened. I had discomfort and pain in my abdomen, which was distended. Both medical and nutrition professionals both gave false claims and misplaces 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.
EDS diagnosis (2020)
I was formally diagnosed with hEDS in 2020. The diagnosis made sense over symptoms, as well as experiences in childhood and early adulthood. The assessment revealed that every one of my major joints subluxed. I realised how much my body had been working thorough and why I had experienced fatigue. We were relieved and pleased to finally have context.
PoTS diagnosis (2021)
I was formally diagnosed with PoTS in 2020.
GI symptoms diagnosed (visceroptosis and mesenteric ischemia) (2021)
The EDS diagnosis gave us context. After research and then requests for appropriate imaging, visceroptosis (internal prolapse of organs) was confirmed in 2021. Imaging showed internal collapse of my large colon, small intestine and stomach; a structural/anatomical issue which is not resolved by diet. A radiologist noted changes in blood flow and further investigation in 2021 confirmed mesenteric ischemia (lack of blood flow to the intestine) when I was in an upright position. All GI scans had revealed a consistently ‘significantly loaded colon’, and the GI diagnosis now explained why.
Imaging also demonstrated mobile cecum syndrome, intestine mobility causing intermitting twisting of the organ (volvulus), explaining numerous incidences of severe pain and A&E attendance.
GI surgery (2022)
In 2022 I had GI surgery. Part of my right large colon was removed with the remainder stitched (pexied) up, and my stomach was stitched up (gastopexys). The colon surgery resolved the intermit severe pain episodes and the stomach surgery vastly improved post-eating symptoms.
GI situation post-surgery
The surgery did not address visceroptosis of most of the large colon, and colon pexys failed within a year.
Current GI situation & seeking ileostomy
The issue of ‘significantly loaded colon’ remains and causes severe discomfort. All non-invasive attempts have been explored and exhausted over previous years. Intervention is needed to address the effects of the known issues. Given the anatomical nature of the diagnosis and success in other similar cases, surgical intervention is sought.
Similar cases (ie EDS patients with visceroptosis and/or loaded colon) exist in literature and online, with patients who had surgical intervention (an ileostomy or resection to significantly reduce the amount of large intestine),reporting great increase in quality of life.
Like myself, many of these patients had experienced delays and previous encounters of resistance to surgical intervention from consultants who viewed GI surgery as only for the standard reasons (cancer, Crohn’s, UC etc).
As well as a list of cases of EDS patients who benefited for ileostomies, a number of medical and scientific professionals acknowledge EDS patients can benefit from ileostomies. Gensemer (2024) states: ‘If the entire colon has prolapsed, the patient may benefit from an ileostomy to bypass the colon entirely.’
Issues accessing appropriate healthcare
There has, and continues to be, numerous issues and barriers in accessing healthcare. These effect many patients. They include; lack of understanding of EDS and the presentations of EDS, a healthcare system that fails EDS patients, disbelief of the patient, lack of diagnostic approach and gender bias.
EDS UK have a campaign, Enough is Enough, calling for change. They note that the diagnosis and management of people with EDS in the has been neglected, causing distress and unnecessary pain.
The EDS Lass 