The EDS Lass writes about life with EDS, articles on relevant topics and her medical journey.
RECENT POSTS
Categories
Tags
Amélie art Croatia Diagnosis Diagnosis denied EDS Exploring Finland Food France health Healthcare System Issues hEDS Helsinki Holiday Home human-rights Hvar Ileostomy Infection informaion informed-consent Island law Lido life Lifestyle Mallorca Medical Mesenteric Ischemia NHS Failure Nostalgia Pairs Paris PoTS Recipe Rest rights Sea Sun Surgery Swimming travel Undiagnosed infection Visceroptosis
As well as GI symptoms, I had worsening fatigue and weakness from 2016, which was extreme in 2020. Only when the long-term bladder wall infection was diagnosed and I started antibioitcs was I better, and in fact so much better I went from housebound to so well that I was back at the gym only three weeks after starting antibiotics! The difference was incredible! The experince showed just how incredible appropariate healthcare can be (if you get it eventually!).
While I can see that I was coping with general fatigue for years prior to 2016, it was not a very significant issue. In 2016-2019 I had a few episodes of classic UTI symptoms, each of which lasted only a few days. Symptoms including pain, blood, painful bladder spasms and sensation of prolapse. Episodes were either not treated at all (even when infection was detected) or treated with three day course of antibioitcs.
My downfall (multisystem issues, including signfiicant GI issues) began in 2016, which coinsided exactly with first episode and worsening. EDS can be flare up by infection, which appears to be the case for me.
High levels of inflammation are suspected to cause increased laxity in EDS patients. In a paper about Covid-19, Turner et al (2023) stated; ‘In those with Ehlers–Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD), the high levels of in ammation present in Long COVID may result in increased connective tissue laxity, which, if left unmitigated, could cause visceroptosis’. In the coming years, visceroptosis of a number of my organs was diagnosed (where you can read about here).
Chronic fatigue was significant, getting serve enough to be near mostly housebound, and bed-bound on the worst days due to weakness. On these days partner would help me walk to and from to the bathroom; that is how incapacitating it was. We were extrememly worried; we were getting no answers from doctors while I continued to worsen.
In early 2021, following the EDS diagnosis in 2020, I was under the care of an EDS expert urogynaecologist for perriod pain. He thankfully found a underlying, long-term bladder infection. He had suspected a long-term bladder infection due to my symptoms and history of ‘UTI’ episodes previously. Comprehensive urine testing confirmed infection was present and the bacteria responsbile. I had a cystoscopy (medical procedure where a doctor uses a thin tube with a camera to examine the inside of the bladder). The infection was visible. Bladder wall thickening (inflammation) was also present.
When the infection was confirmed and antibitics presribed I was have zero expectations that the severe fatigue was improve. People think of bladder infection symptoms localised to the bladder, such as pain and discomfort there. Aside from the short episodes, I did not have bladder symptoms.
After two weeks I noticed an improved energy, and at three weeks the change was remarkable; chronic fatigue was gone. I went from getting help sitting upright to having energy to go to the gym regularly. PoTS, which was also signficant, reduced greatly!
We were delighted and astonished!
It was significant; experiencing how effective and life changing a correct diagnosis and treatment can be.
On relfection, why should it be surprising that a long term infection, which the body has coped with for years, could cause severe fatigue. And, when the infefction was finally addressed the long-term fatigue would resolve.
In the expert’s opinon the infection had been present for six months at absolute minimum, and suspected, since UTI episodes earlier were untreated years previously, that the infection had been present for 3-5 years.
It was shocking to realise that bladder infections, or ‘UTIs’, are seen as innocent and assumed that they will pass.
Had I been diagnosed with EDS sooner, I would have been under this consultants care sooner.
The infection is suspected to have been the catalyst that worsened my long-term health. Although the fatigue since 2016 was gone, the infection seems to have set off the incraeased internal laxity, creating GI issues.
The EDS Lass 