"I wish I did not have incontinence. It controls my existence."
"Do your online research about incontinence. Use your everyday common sense and don't get discouraged when you have a bad day."
Those two dramatically different statements illustrate the range of responses to questions about incontinence. For the first time in our five-year history, Parentiving.com conducted an opinion survey on the troubling condition reaching out to nearly 5,000 people who use self-care products in this category. The focus was to learn how you cope with incontinence and if a greater awareness about it as a medical issue has erased its stigma and prompted more people to talk to their doctors about treatment. We also asked you to share both your frustrations and your strategies for maintaining quality of life.
Results show that while progress is being made, there is still distress and frustration. Slightly over 70% have talked to their healthcare provider about incontinenceâ€”many of them are taking or have tried medications, and a few have had surgical procedures. For nearly 25%, incontinence is a known part of an ongoing medical problem, from MS, Alzheimer's and Parkinson's disease to prostate surgery for men and uterine prolapse for women.
Twenty five percent are taking or have taken medications, but less than half report that the meds help. Some can't take incontinence drugs because they'd interfere with medications prescribed for other conditions or because they just can't afford them.
Other medical conditions and costs were among the reasons some people declined to have surgery to correct incontinence. Others chose not to have it because the results were too iffy or because they felt they were too old. One respondent already had two surgeries, neither of which helped, yet three others found their surgery successfulâ€”procedures involved a sling or implanted stimulator. At the other extreme, a few respondents reported that their doctors didn't bother to suggest any treatment or minimized the condition.
A few did find help with a non-invasive approach: "My doctor sent me to a 6-week continence program with a local therapist. It's very hard to do the exercises consistently, but if I don't then the problem gets worse."
The discouraging finding is that nearly 30% of respondents have still not sought medical attention. Reasons are varied. A few people still feel embarrassed about bringing it up, even to an experienced medical doctor. One respondent wrote, "Too embarrassing to discuss, especially since I don't think there's anything she can do about it. Also, if there's a pill for it, I already take so many pills I rattle when I walk."
Others just assume it's just a normal part of old age (it's not!) or don't know that there are treatments that might help. Some feel that their more life-threatening medical issues, from diabetes to stroke recovery, take precedence when they're at the doctor's office. For a few, the possibility of yet another medication to add to their existing regimen is financially out of the question, so they just don't bother to bring up incontinence. But one person offered this advice to anyone still hesitating about asking for medical care: "If you don't feel comfortable talking to your doctor, please find another doctor."
Survey results offered insights into what concerns you most and how you manage incontinence:
* Fear of accidents is the top concern.
Two-thirds of respondents ranked this as their number one worry. The lack of product selection came in second at 21%. People want more product choices, which will, in turn, help them feel more secure about avoiding accidents.
* Online is the way people want to buy products.
Nearly 46% buy products online where you can get the widest selection and have anonymity.
* Absorbency is the key feature in choosing products.
An overwhelming 81% ranked this first. Information on a product's absorbency should be front and center on product descriptions, say the respondents. Comfort ranked second and the ability to buy a product online ranked a strong third at 36%, above both cost and anatomical design of items.
* Many people are satisfied with their incontinence products.
In fact, 40% are very satisfied. However 44% are only somewhat satisfiedâ€”there's room for better education about products to help people find those that are more effective and the respondents had numerous suggestions for incontinence product manufacturers to improve styles.
What You'd Like to See From Manufacturers
You're very vocal about what's needed from manufacturers and your hope for improved products. Here's what's on your wishlist:
|Fear of accidents||67.01%||11.68%||5.08%||6.60%||9.64%|
|Shopping in person for products||6.09%||9.14%||18.27%||19.29%||47.21%|
|Stigma about the condition||12.18%||17.26%||22.84%||19.29%||28.43%|
|Lack of product selection||21.32%||20.81%||19.29%||16.75%||21.83%|
|Fear of others finding out||11.68%||16.24%||19.80%||19.29%||32.99%|
|Yes but only if they have incontinence||15.23%|
|Ability to buy online||36.55%||18.78%||19.29%||8.63%||16.75%|
|Automatic online reorder||13.20%||9.14%||16.75%||12.69%||48.22%|
|Very - Having the right products keeps it from impacting your day-to-day living||39.59%|
|Somewhat satisfied - At times you worry about leaks and bulky products||43.65%|
|Not satisfied - You're still searching for effective products and/or medical treatment||11.68%|
|Discouraged - Your daily life is severely impacted||5.08%|
|50 to 59||8.12%|
|60 to 69||13.20%|
|70 to 79||18.27%|
|80 or older||50.76%|
|With a relative or friend||20.81%|
|In assisted Living||9.64%|
|In a nursing home||2.03%|