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Healthy Living: Incontinence 'a Silent Leprosy' for Many



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Suzy Bristow can finally talk about the humiliation, but only because it is 10 years behind her.

She remembers standing in front of a group of men when she was a corporate executive, wondering whether urine would come flowing down her legs.

She remembers taking a short hike years ago with her son and having a leak so bad from her bladder that urine was puddling in her shoes.

"It was so humiliating," said Bristow, 50, from Marietta. "My 3-year-old asked me why was I wetting my pants. I carried a purse that was bigger than my son's diaper bag so I could carry all these pads around."

Bristow is one of 25 million people who have difficulties controlling their bladder, a condition called incontinence. It is a problem little discussed in polite circles because of the unpleasant result.

And, it is a problem that causes immeasurable emotional pain.

"Those were 10 of the most roller coaster years of my life," Bristow said of the years she lived with her condition. "I had low self-esteem, I never felt clean. I quit believing in myself."

Bristow was afraid to go to her son's playground. She did not want to be intimate with her husband. She turned down social engagements.

Finally, she found help. Bristow had surgery 10 years ago to repair her faulty bladder and has not had a problem since. This weekend, she is a speaker at the Lifelong Bladder Health & Pelvic Support Conference to be held in Charleston, S.C. The conference is geared to those who have bladder and bowel control issues and nurses and doctors who treat them. 'Sense of shame'

One goal is to help bring the taboo topic out of the closet and to let its sufferers, 80 percent of whom are women, know of new treatment options, including exercise, surgery, drugs, radio-frequency thermal energy treatment and dietary changes.

"Women in their ignorance and sense of shame resign themselves to live with it," said Nancy Muller, director of the National Association for Continence. "Women are great copers, but just because they have such great coping skills doesn't mean they have to live with this."

Bladder control problems include having to urinate frequently, a condition called overactive bladder syndrome, and an inability to hold urine when the bladder is full, or incontinence. For some, like Bristow, the problem is physiological, the bad luck of a naturally faulty bladder. It can result from injury, surgery and sometimes infection. For many men, the problem is a result of prostate surgery. It sometimes can be a result of aging.

But for most, it is a result of weakening pelvic floor muscles, often from traumatic labor and childbirth, or from repeated pregnancies and deliveries that weaken the muscles that support the bladder. The bladder neck, or urethra, then extends.

It can result in occasional incontinence, called stress incontinence, a leakage of urine when a person laughs, sneezes or jumps.

The occasional incontinence can worsen with time, requiring a woman to wear protective pads throughout the day. Often, she will limit her activities and social life because she is afraid of an "accident," doctors said. Depression is a frequent co-condition.

Yet only 5 percent of the 5 million patients who have serious symptoms --- frequent, daily leakage --- seek treatment.

In Bristow's case, she struggled for 10 years before someone would take her symptoms seriously, she said. After all, she was only 31 and had never had a child.

"One doctor even told me that I was reading the signals wrong from my bladder," she said. "If only one of them had sent me to a urologist."

She finally saw Dr. Niall Galloway at Emory University College of Medicine, also one of the speakers at Saturday's conference.

"I call him my guardian angel," she said. "He gave me my life back."

Galloway and other doctors who treat patients with incontinence said that doctors must be aware of the embarrassment the topic engenders.

"The embarrassment that patients have is only matched by the embarrassment of the doctors," Galloway said. "We're dealing in part with an issue that's a medical issue, part personal issue and part political. But this is a massive health problem." New treatment options

Dr. Nathan Mordel, an Atlanta gynecologist, said he makes a point to ask women during their annual gynecologic exams if they are having problems with continence.

"I actively pursue that line of questioning because I know it is something they do not want to bring up," Mordel said.

Patients also are often afraid to seek treatment because they fear surgery. In fact, 90 percent of incontinence can be solved nonsurgically, Galloway said, through pelvic floor-strengthening exercise, cardiovascular exercise, medication, and avoidance of substances like caffeine that irritate the bladder.

Bristow tried several nonsurgical solutions before having major abdominal surgery to help her sagging bladder. Galloway performed what was then the most current surgery to treat incontinence, taking tissue from another part of the body to make a "hammock" to support the sagging bladder. Bristow suffered through six weeks of postoperative pain, but she said the result was worth it. She has never been incontinent since.

In the 10 years since Bristow's surgery, techniques have advanced. Surgeons are able to perform a minimally invasive procedure that takes less than 30 minutes.

Mordel has performed about 200 of these procedures, called tension-free vaginal tape surgeries. The surgeon inserts mesh tape instead of a woman's own tissue to hold up the bladder. Some are even done under local anesthesia, while others are performed with an epidural or spinal block.

About 500,000 of these surgeries have been done in the past 10 years, with an estimated 85 percent success rate.

The doctors stress that surgery is far down the list of treatment options. The first step is asking for help. For those reluctant to do so, there is help from the NAFC, which offers support and educational material. Among other things, the group offers help for that first discussion a patient has with her doctor.

"We even encourage women to stand in front of the mirror and practice what they're going to say to their doctor," said Muller.

While patients do their part, the medical community and a culture intent on making jokes about the condition need to show more compassion, Galloway said.

"It's one of those things like a silent leprosy," Galloway said. "It really does take your life away." FOR MORE INFORMATION > www.nafc.org > For more information about the conference or to register, call 1-843-377-0900. On ajc.com > Search our health databases for information on your prescription drugs, the latest health news or find a doctor in your area at ajc.com/health.

Copyright 2004 The Atlanta Journal-Constitution

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