My name is Harry, although diagnosed at 17 and being hypermobile Ehlers-Danlos syndrome (hEDS) didn’t affect me until I had a severe and dangerous prostate infection. This flared up my EDS.
It was my bladder which EDS hit hardest first. I began retaining urine because my bladder muscles were not able to work, but I was also receiving huge spasms below the penis causing incontinence.
It became very traumatic wetting myself in client meetings, in the office, on the train, anywhere and everywhere, whilst retaining became excruciating and all this knocked my self-esteem so hard. I eventually broke down and didn’t leave the house. All the while due to dislocating hips I became disabled.
I had numerous tests done which concluded it was EDS, and despite numerous medications was not a curable problem.
I started off on self catheters but ended up both using them to get retained urine out and to stop myself from wetting myself. This became unmanageable and I was put through more tests and then given an urgent urethral catheter. I was hugely relieved. It took so much pressure and panic away, and I felt a huge weight off my shoulders.
Since then I have been given a suprapubic catheter that goes straight through the bladder wall. I will have this for life. Bar the occasional infection I feel a sense of relief. A lifetime with it is not a problem for me. And more importantly, I’m happy with it, I don’t care what people think when they see my catheter bags, it’s one big problem I don’t need to manage. Catheter changes are painful and I’ve had operations to help make them easier. I have a great team of urologists at both Basingstoke and UCLH.
The urological challenges with EDS can be incredibly scary and frankly humiliating. But with the help of catheters, I’ve claimed that element of control and associated self-esteem back and can focus on my other symptoms.
My prostate is still a big problem and being investigated but managing the bladder and urine flow is one thing I can control -@Harrythezebra1
