I hope this does not come off as intrusive, but I am a design student looking to do my next project around incontinence and absorbent underwear as it affects so many people. If you are willing to share, I have a few questions that could help with my research:
– What are your preferred terms for the products you use (eg. incontinence underwear, absorbent underwear)?
– What are the main issues with products that are currently available?
– What product works best for you (eg. pads, underwear…), and why?
– Is reusable absorbent underwear appealing to you? This already seems to be popular for children’s nappies and period products, but I have also seen a couple of brands that offer underwear for light bladder leaks targeted primarily at women.
– Does the idea of specially designed trousers sound appealing? These could offer either a second layer of protection, help mask the shape of underwear, or provide easier access.
Thank you for your interest in tackling the cause of so many people’s utter misery.
Incontinence is little comprehended by health professionals who, in not suffering it themselves, have no idea of the abject depression, hopelessness, sadness and utter despair that people feel because they cannot control their own urine leakage and have to resort to all manner of draconian measures (that mostly do not work) in a feeble attempt to carry on their lives under such overwhelming difficulty.
For your understanding, I had a radical prostatectomy in Spring 2004 followed by seemingly innumerable further procedures in an attempt to regain some of the control I had enjoyed for the first 58 years of my life. My life ended with the prostatectomy and I have been incontinent since. I now have a tandem artificial urinary sphincter (AUS) arrangement installed in 2013 (a single AUS cuff simply didn’t do the job) but which failed precisely 5 years later in late 2018. All that I have read seems to indicate that AUS systems fail in some way after about 5 years. Since then I have been incontinent again but this time with apparently little hope of any remedial procedure for two reasons :-
1. The local urological consultant tells me that any replacement AUS would be only about 60% effective and that they “do not instal tandem sphincters any more” (reason not forthcoming). My GP tells me that replacing my present 2 sphincters is not possible as we are dealing with human flesh, not car mechanics where ‘old one out, new one in’ will do the job. Effectively I have been told that the situation I now have is for the rest of my life. I cannot understand why, if my two cuffs were still working there would not be a problem with their being in place. It seems any replacement will automatically not work properly
2. With the release of Covid19 to the world, hospitals appear unwilling to accept even cancer patients (many have now died for want of treatment) let alone ‘mere urinary cases’ so even though I have asked for a second opinion on the above, I sense I have little hope of receiving any kind of remedial treatment that would give me back my life.
In all of my incontinence, I have used catheters then convenes with leg bags, just pads and penile clamps. A side-bag connected directly to the kidneys has also been suggested. Catheters in my experience lead to urethral infection, convenes stick so securely that to remove them you pull out all the hair, leg bags present a dead weight at the ankle which (for me) threw out my sense of walking balance and can also under certain circumstances be seen at the bottom of the trouser leg.
I have tried several types of penile clamp, including making my own. Those I made seemed to be the most comfortable to wear and at one point lasted several hours without leakage. That said, I cannot repeat that experience and any I presently make fall apart with body warmth or movement which causes them to become displaced. The factory made types such as Dribble Stop are intensely uncomfortable to wear, can be worn only for short periods and are invariably dislodged with movement such as walking or even sitting so that they allow uncontrolled urine leakage, often unrealised until too late.
If any of this helps your understanding of the incontinence problem or devices currently available to sufferers, then you are welcome to use what I have written. Maybe some day effort will be devoted to stem cell research toward prostrate regeneration. This in my view, is the ONLY remedy that will actually work as anything else is at best Dickensian, at worst simply pointless through discomfort or failure to control even the slightest of dribbles. From my own internet research, it seems little or no effort or interest is given to stem cell technology. It has to be extremely simple to re-generate a natural sphincter in place of the one surgically removed due to cancer yet nobody, absolutely nobody is interested in this possibility or of giving very large numbers of men back their lives in such an easy, non-invasive and fool proof manner.