Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice.
I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
As long as i remember i had bladder issues and it formed my personality profoundly. Having bladder control as early as possible in our lives is one of our first goals we are praised for, something we can do to make the ones we rely on proud.
No wonder we feel ashamed if things don’t work out. In order to make children aware of the control they are supposed to have from a young age, they are taught that only little children don’t have bladder or bowel control, that wetting is something to be ashamed of.
Children are compared to each other for the age of being potty trained and if this is out of expectations they are considered late or having development issues. This undoubtedly has an impact on the child and depending on how parents handle this, and how much the child has to adapt to fit in the society where incontinence is a taboo, it can be very traumatic.
I had trouble bedwetting during my childhood. Daytime wetting was seldom but I did have often, sudden urge which was hard to hold. As a toddler it was impossible for me to determine that it was actually the urge to hold my pee that was painful. I often mentioned I had a stomach ache, as I called it, now I know it was bladder tension, holding desperately to not pee my pants. As I grew older, obviously I could tell the pain and discomfort was from bladder urge. I avoided events as a child and teen where there was no toilet near, like school trips or other events, but sometimes I just had to endure the pain, and on rare occasions I peed myself.
At night things were a bit different. There wasn’t pain involved, and no hints could warn me, no matter if I drank before going to sleep. I could go weeks without bedwetting and suddenly it started 2 or 3 times a week. As I grew older I realised I wet the bed mostly when my body was relaxed. Being mentally balanced and in peace with myself did enhance the chance of bedwetting. I managed to control, or manipulate my body into tension while asleep around the age of 14 or 15. The high tension during the day remained up to my early 20th. Better strength and having control as an adult where and when to go, where and when to go the the toilet improved my urge incontinence and it wasn’t much of an issue anymore.
This changed in my early 30th. Slowly the painful urge got worse. I had to run to the toilet and planned activities around the possibility of nearby toilets. At first almost natural, without any deeper thoughts about it. This changed however instantly when I was 34 years old. Suddenly I peed myself in a most shameful situation. I was horrified and it was a turning point in which my body turned into a panic mode. From that moment on I was terrified it would happen again. I wasn’t aware at that moment what my mind did to my body, that i was contracting my bladder and sphincter that hard. It didn’t matter though, more and more often I didn’t reach the toilet on time. Going to the loo out of precaution wasn’t helpful because I was unable to relax my bladder the moment I wanted to.
It took nearly a year before I got the courage to see my doctor. He prescribed medication and he was quite sure it would work out. I was so relieved, felt stupid for having been waiting for so long when a simple drug could be the solution. Unfortunately it didn’t work out. After trying another drug I was referred to a urologist a year later. By then i had between 18 and 25 pee moments a day and couldn’t tell pain from urge or tension from my bladder. One of the first tests was a urodynamic test where I had to pee into a special bowl and the amount of pee that was left in my bladder was determined by ultrasound. I had an astonishing 800cc left in my bladder which was potentially dangerous and I left the clinic with a foley catheter. I learned to self catheterize which was a relief for a while.
But most of the time only very little urine was self-catheterized and peeing accidents kept happening. I could self catheterize before a social event and my incontinence was a bit easier to handle but over all there was very little benefit. Still, I had around 20 urinations in 24 hours, catheterizing 3 or 4 times a day didn’t make that big of a difference. Good thing though was that after catheterizing my bladder felt pain free for a moment, moments I cherished.
Search for the cause carried on and I was referred to a pelvic floor therapist. I did exercises, posture, breathing and relaxing. I felt like handling the right spot, but it only got worse when relaxing. The therapist quickly noticed the high tension from my pelvic muscle, but relaxing it was only making things worse, not only uncontrolled urination, but also defecation. Others suffering from EDS might know the feeling but relaxing muscles feel uncomfortable, painful and that is exactly what happened during these exercises. I tried it though, almost 9 months until I gave up.
Over the years I had many urinary tract infections due to not being able to pee out normally. Many other treatments followed, obviously antibiotics, orally and directly inserted into the bladder, botox, bladder rinsing, neurologic blocking drugs and sacral neuro stim. All these treatments had their own waiting lists, trail periods and all in all after about 10 years my urologist told me there was nothing she could do for me.
By that time the frequency got down to about 10 to 15 urinations a day. The tension no longer kept the urine inside my bladder. I now only feel a slight urge, a moment before I start peeing. At night I feel nothing and I don’t wake up from peeing myself which means I never make it to the toilet on time. Being incontinent is not something that I can get used to. The best I can do is manage it.
“ EDS affects connective tissue, which is present throughout the body, including the bladder. This tissue is important in facilitating the movement necessary to expel body waste. Any abnormality in the connective tissue can disrupt such function.Bladder issues in EDS could be due to differences in the anatomy of the urinary tract and pelvis in some patients, dysfunction of the involuntary part of the nervous system that controls the bladder, inflammation, or bowel problems. “
https://ehlersdanlosnews.com/2020/08/19/bladder-issues-ehlers-danlos-syndrome-eds/
“ Urinary complications were the most frequently reported overall, and were particularly common in studies of patients with HSD. Specific complications included stress, urge, intercourse, and nocturnal urinary incontinence (UI), vesicoureteral reflux (VUR), multiple and reoccurring bladder diverticula, recurrent urinary tract infections (UTIs), bladder outlet obstruction, bladder pain, dysuria, hematuria, megacystis, urinary retention, and voiding dysfunction.”
https://pmc.ncbi.nlm.nih.gov/articles/PMC6917879/
Bladder issues, bedwetting, and incontinence have had a major impact on my life. The despair caused by shame and lack of understanding of my own body has shaped who I am. My self-image has been negatively affected, and I often wonder what kind of person I would have become if I hadn’t experienced these problems growing up. Everyone is different, of course, but if a child today grows up with these problems, I hope they know and realize they are not to blame. I hope there is more understanding among parents, teachers, peers, and doctors about this issue and how much it can burden a child and adolescent. A few incidents have always stuck with me, which I describe here to illustrate their impact and to show the impact bedwetting and incontinence can have on a person. I hope this will be helpful to someone struggling with this today.
Living with Ehlers Danlos Syndrome 