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.
“ Incontinence is a discrediting and stigmatising condition for those who experience it, as it signifies a person who is lacking in self-control …
… the failed incontinent body evokes particularly destructive assaults on a person’s adult status because there is both symbolic and actual filth that emanates from their body …
… For many, incontinence is seen as being the last frontier of the social life, the point beyond which it is no longer possible to engage actively and equally in society (Twigg, 2000). Its social and psychological impact on a person’s life has been well documented “
https://www.sciencedirect.com/science/article/abs/pii/S0277953607002006
Bladder or bowel control is the milestone that separates children from babies or toddlers. It is seen as the biggest step, after language and walking of course, towards independence and the road to adulthood.
The inability to control it is seen by most of society as infantile and as such stigmatizing. Having to use adult diapers reinforces the infantilization of those who need them. The stigma exists because of a lack of understanding, misconceptions about incontinence, awareness and a lack of discussion about the causes and how common incontinence is.
Diapers are a medical device, just like glasses or a walking stick, but people associate them with childhood rather than a necessity. I myself was no different and felt deeply ashamed of them. This meant that the level of protection I was mentally prepared to use always lagged behind the severity of my needs. Every time I was forced, usually by embarrassing leaks, to increase the size of my incontinence aid, I was dejected. It was an attack on my manhood, maturity and respect.
I am not the type to actively promote awareness. I am too introverted and shy for that. Absorbent aids can be used discreetly and I do not worry about them being visible, even though I need high absorption capacity. My life with incontinence is not just the use of incontinence material. It is a life that is dominated by the possibility of changing my pads. Being prepared for opportunities to change and throw away used pads when planning trips and travel. By skin care and constantly being on the lookout for urinary tract infections.
ABSORBENT MATERIAL
The use of absorbent material is now actively being removed from the taboo sphere by percentages and patient associations. This usually concerns people who have stress, incontinence or pelvic floor or prostate complaints. These aids are now widely available and work well for drops or small squirts. In advertising, the products are promoted as if incontinence is normal for some population groups. In my opinion, that is not the case and if someone needs incontinence material, it is due to a medical condition, not an inconvenience.
Pads
Pads come in many sizes. Small inserts are usually different for women and men, while large inserts are unisex. Small pads often have an adhesive strip, while large pads are fixed with fixation pants or tight underwear. Large pads can theoretically absorb a bladder filling, but the chance of leakage in case of heavier incontinence is high. The advantage of padsis that they are easy to change.
Pants
Pants are panties that have an absorption level of medium to large insert. The advantage over an insert is that pants always fit well and that no fixation pants are needed. The disadvantage is that the pants have to be completely removed for changing. Just like with inserts, the chance of leakage is high with heavy incontinence.
Flex slip
Flex slips are usually for heavier incontinence. They have a thicker pulp layer, with anti-leak edges that ensure safety, even with heavier incontinence. They are secured by a band around the hip, which makes changing easy. The disadvantage is that they are usually slightly more expensive than slips.
Slip
Slips are most similar to diapers as we know them for babies. The pulp layer is similar to that of a flex, but unlike a flex, a slip has wide hip flaps with adhesive strips that are secured at the front. This can lead to a mental barrier to opting for slips. The wide hip flap allows the briefs to be fitted tightly and therefore close well. In my experience, these are the safest and easiest to change.
Over the years, I have tried many other methods besides absorbent incontinence material.
URINARY DRAINAGE SYSTEMS
Catheter
A catheter is not so much a tool as a medical instrument. The risk of urinary tract infections is high and that is why doctors are reluctant to prescribe a catheter. A catheter, in combination with a flipflow, a kind of drain tap, can be a good aid in training the bladder and increasing the bladder capacity.
External catheter
This is also called a condom catheter. This already indicates that these are only suitable for men. They are placed over the penis like a condom and have an adhesive strip on the bottom. The most important thing is to choose the right size so that the adhesive strip seals well and is still comfortable to wear. I use these on holiday because absorbent material takes up a lot of luggage, and they also provide protection in the water. They are comfortable to wear and I use 1 catheter for 24 hours. After a few days, however, my skin becomes sensitive and irritated by the adhesive strip. Most important to me is a comfortable urine bag. I can wear the Coloplast Active Bag discreetly under swimming trunks.
Intermittent Catheter with collection bag.
These can be a solution for patients who have to perform self-catheterization and may end up in situations where there is no toilet nearby. These were an emergency solution for me. If there is no toilet nearby, self-catheterization cannot be done discreetly. Finding a place to throw away a bag full of urine in an emergency is difficult and causes discomfort. But in an emergency it can be a good solution.
ADDITIONAL AIDS
In addition to directly managing incontinence, various aids can be useful.
Underlay pads can be useful to protect the mattress. Leakage is rare but can still occur.
Skin care. Urine can affect the skin and must be monitored. A barrier cream can be used to create a layer between the skin and urine. In my opinion, these are too greasy and I do not use them anymore. I do use care cream if necessary.
Urine odor spray. Despite the fact that hygiene is observed, odor formation cannot always be prevented. Urine odor sprays are a good solution for unwanted odors in clothing or furniture.
Disposable wipes. These are indispensable on the road.
Diaper bag. For changing on the road, in addition to clean bandages, washcloths, cream, waste bags and perhaps more items are also needed. A bag that contains everything and is ready to take with you is very useful.
Dealing with incontinence is very personal. An incontinence nurse can best determine together with the patient what works best. It is important not to be surprised by your own body as a result of declining bodily functions. Even after more than 10 years, I am still ashamed and shame was the reason why I did not dare to ask for help for far too long. Although I have seen many doctors and nurses for incontinence complaints, no one has ever asked me if I needed help to deal with incontinence. The focus was always on treatment, not on management. Asking for incontinence material was too painful for me.
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 