Some people wet the bed. Cynthia MacGregor wet her boyfriend.
“I was in bed with my then-boyfriend, one leg over his leg and I woke up and found myself peeing on him,” says 65-year-old MacGregor, a freelance writer and editor from Palm Springs, Fla. “He was a good sport about it, but I was embarrassed as all bloody hell.”
MacGregor’s episode with nocturnal enuresis — involuntary bed-wetting — took place 30 years ago, after the radiation treatment she received for her cervical cancer left her with temporary urinary incontinence. A talk with her urologist and a few months of medication helped her beat the bed-wetting — and the urgency and frequency issues that went with it — but others haven’t been as fortunate, primarily because they haven't been as forthcoming.
About 26 million American adults are currently affected by urinary incontinence, according to the Simon Foundation for Continence. Of those, an estimated 1 to 2 percent experience bed-wetting, either as an issue that’s carried over from childhood (i.e., primary enuresis) or a secondary condition that’s developed in adulthood due to a neurological disorder, prostate obstruction, diabetes, overactive bladder, complications from childbirth or other medical issues.
But some believe that number is low.
“I think bed-wetting is underestimated,” says Dr. Jennifer Anger, assistant professor of urology at UCLA. “It’s a don’t ask, don’t tell situation. Physicians don’t inquire about it and if they don’t inquire, it’s often not discussed. It’s very underreported.”
“Bed-wetting can affect partnerships, it can affect sleep, and it can be a financial burden, as well, if you factor in the cost of bedding, protective sheets, mattress covers, et cetera,” says Anger, who has been treating patients for 10 years. “It can have a significant impact on the quality of life.”
According to the National Association for Continence, two-thirds of men and women age 30 to 70 have never discussed bladder health with their doctor, and only one in eight Americans who’ve experienced loss of bladder control have actually been diagnosed. Women, who are between four and five times more likely than men to suffer urinary incontinence problems because of the trauma of pregnancy and childbirth, wait an average of six-and-a-half years from the first time they experienced symptoms until they obtain a diagnoses for bladder control problems. Men are even less likely to be diagnosed than women.
But the underreportage isn't just because doctors don't ask about bladder health, Anger says.
“When patients — especially older patients — are asked if they wet the bed, they almost always say no,” she says. “But when asked if they wear a pad or diaper at night and if they wet that, they’ll say yes. If the bed itself is not getting wet, they don’t feel they’re wetting the bed.”
The hedging and hair-splitting are part of a larger problem: the shame adults feel about owning up to a behavior that’s usually thought of as a bad childhood habit.
Connie, a 42-year-old Rome, Ga., housewife who’s dealt with wetting the bed on and off her entire life, says she has yet to discuss the issue with a doctor.
Many people perceive wetting the bed as being infantile behavior, says Dr. Elaine Ducharme, a Glastonbury, Conn., clinical psychologist who’s worked with several patients with enuresis. “When you’re a child, you’re spanked for wetting the bed. It’s considered naughty. And grown-ups aren’t supposed to do that. If you’re routinely wetting the bed, there’s a sense that you’re don’t have control of your body and that’s a big issue. Adults are supposed to have control of their bodies.”
Unfortunately, bodies can go haywire — sometimes in socially awkward ways — and people suffering with nocturnal enuresis are left to reconcile a mix of conflicting emotions: fear, shame, embarrassment, anger, denial.
“I try to help my patients understand that this is a medical issue and that they’re not alone,” says Ducharme, who has a background in nursing. “But it’s a tough issue for many adults because of the sense that ‘grown-ups don’t do this.’”
Fear can also cause people to remain closemouthed about the condition, says Connie, who says she's afraid of what her doctor might tell her if she comes clean.
“Part of it is the shame, but if something is wrong, maybe I don’t want to know,” she says.
Plumbing the depths
But finding out what’s behind the bed-wetting can often help alleviate it, says Renee Mercer, a nurse practitioner from Elkridge, Md., who founded both BedwettingStore.com and NationalIncontinence.com, online sites that cater, respectively, to kids and adults with nocturnal enuresis.
“People are very reluctant to mention it, but if they do, the doctor might be able to catch something early or make suggestions as to what the patient can do to relieve it,” she says. “Bed-wetting can be caused by new medication or by sleep apnea or other sleep disorder. It can be due to diabetes or a urinary tract infection. It can be also brought on by pelvic floor muscle weakness as a result of childbirth. These can all lead to daytime or nighttime incontinence.”
Connie, whose sister also had issues with bed-wetting as a child (her nephew is going through them now, too), says she feels she just “sleeps too hard.”
“Once I go to sleep, it’s just really hard to wake me up,” she says. “I think that’s what’s behind the bed-wetting. I just sleep so deep.”
John, a 60-year-old chiropractor from Poughkeepsie, N.Y., who asked that his last name not be used, attributes his plumbing problems to a number of factors: the bladder cancer he kicked 35 years ago, the “gazillion” follow-up exams he’s had where a cytoscope was inserted in his urethra, the prostate problem he’s suffered for a dozen years and the medications he takes to control it.
“I’ve got all the ‘cy’s’ – urgency, frequency, intermittency. And I wake up wet a couple of times each night,” he says. “My body is behaving like I’m 90. I don’t know what’s going on.”
To find out, John is seeking help from both a urologist and a naturopath and has sworn off coffee, dark chocolate and other diuretics. The one thing he’s kept, though, is his sense of humor.
“We start out in diapers, we end up in diapers,” he says. “What are you going to do?”
Not a normal sign of aging
Actually, experts say there’s a lot people can do.
First and foremost, they should understand that incontinence is not a normal sign of aging, according to the Simon Foundation for Continence. Those dealing with daytime or nighttime wetness should consult a health care practitioner (i.e., a general practitioner, gynecologist, urologist, nurse practitioner, etc.) to determine what’s at the root of the problem.
“If it’s due to sleep apnea, you could be referred to a sleep specialist to get that under control, and if it’s related to stress incontinence, they can recommend Kegel exercises and strengthening techniques to hold things in better,” says Mercer, the nurse practitioner who specializes in enuresis. “Something else that’s very effective is a timed voiding program, where you empty your bladder on a regular basis so it doesn’t become over full. Once you diagnose the underlying cause, then you can take appropriate behaviors to end it or at least make it better.”
According to the Simon Foundation for Continence, no treatment option has a 100 percent success rate, and those suffering from enuresis may have to experiment with different options to see what works best. UCLA's Anger says treatment options include medication and behavior modification, such as fluid restriction, decreased alcohol intake, decreased caffeine and nighttime alarms.
“People think their selections are Depends or a sanitary napkin, but there are hundreds of really great products that are especially designed for this,” says Mercer.
Online forums are available as well, via sites like Dailystrength.org and Groups.icq.com, offering people of all ages a safe spot to vent, commiserate and swap information regarding workable solutions (keep in mind, there are also a few fetish boards surrounding the topic so surf wisely).
“Sometimes just knowing you are not alone is enormously helpful,” says DuCharme, the clinical psychologist. “Also, I find that when people can move beyond the secret and deal with it in a very matter of fact and straightforward way they feel better, i.e.., ‘This is a problem I have. It is not who I am.’”