The Last Medical Taboo
/Guest blog by....sources below
"Taboo" health conditions, such as Stress Urinary Incontinence (SUI), create monumental challenges for the medical community. More than 90 percent of people suffering from SUI are women, and, according to the National Association For Continence (NAFC), SUI symptoms affect an estimated 34 million women in the United States today. In fact, in a recent survey on SUI conducted by NAFC, one quarter of women aged 18 or older reported leaking symptoms in the month preceding the survey.1
While these statistics are daunting, the most alarming fact is that most of these women suffer silently, have not reported their symptoms to their physicians and, thus, have not been diagnosed properly.
The following explores SUI, its impact on sufferers and available treatments.
Urinary Incontinence: "The Last Medical Taboo"
Urinary incontinence is often referred to as a "widespread disease and one of the last real medical taboos for many people"2 The shrouded nature of the condition leads many epidemiologists and women's health experts to believe that the true number of sufferers in the United States is more than reported. In the US alone, urinary incontinence affects three in ten women and is more prevalent than diabetes, hypertension or depression among female patients in the primary care practice setting.3 Due to the embarrassing nature of their symptoms; however, nearly half of these Americans are too ashamed to discuss this problem with their health care professionals.
Incontinence manifests itself in a variety of forms, and women suffer from three main types:
Ø Stress urinary incontinence (SUI) - an involuntary loss of urine with an increase in abdominal pressure caused by a physical activity such as coughing, laughing, sneezing, lifting or exercising. In patients with SUI, the urinary sphincter lacks sufficient strength to prevent urine leakage when an abdominal pressure increase causes an increase in bladder pressure.
Ø Urge urinary incontinence (UUI) - occurs when there is involuntary loss of urine associated with a strong sensation of the need to void. UUI can appear in women somewhat later in life than does SUI. It can occur when the bladder is irritated or overactive or, most commonly, when the ability to suppress bladder activity is lost (idiopathically).
Ø Mixed Urinary Incontinence (MUI) - occurs when a patient has a combination of both stress urinary incontinence and urge urinary incontinence symptoms (SUI + UUI)
Other forms of urinary incontinence exist. For example, the condition may appear as a side effect of a surgical procedure like a hysterectomy, or it may stem from a neurological disorder or a disease like Alzheimer's disease. Leakage from urinary incontinence may also occur with bladder problems. In overflow incontinence, for example, a patient may experience leakage when the quantity of urine exceeds the bladder's holding capacity.
Yet SUI, a distinct form of UI, differs markedly from other types of incontinence, including overactive bladder (OAB), and it is the most prevalent form of the problem.
The primary causes of SUI are:
· Nerve damage,
· Muscle damage or weakness, and · Damage to the support of the bladder and urethra
Two types of events cause SUI: those that directly damage or weaken the pelvic muscles, or those that indirectly damage other pelvic support structures like muscles, nerves or the blood supply.
Other factors that may promote the onset of the disease include childbirth, obesity, smoking, and constipation.4 In certain cases, women may have a neurological, anatomic or muscular predisposition to develop SUI.5
Overcoming the taboo about SUI requires addressing several misperceptions and facts, including the following:
· SUI is a legitimate medical condition, but eight out of 10 women mistakenly believe that it is a normal part of aging. On the contrary, women in the prime of life suffer from SUI. Research published by the World Health Organization (WHO) confirms that SUI affects 35- to 60-year old women
· Only one out of 12 women seeks help for her condition, preferring instead to cope for several years before discussing the disease with her doctor
· Sufferers say the condition is embarrassing, socially isolating and debilitating
SUI: The Emotional and Psychosocial Impact
Stress urinary incontinence presents a tremendous emotional burden for the patient. The emotions result from three areas of impact: self-image, lifestyle and relationships.
Emotional Impact of SUI on Patients
SUI sufferers find the condition to be embarrassing, socially isolating and debilitating, impacting them emotionally. Many see the condition as a personal failing, damaging self-image and often creating a pervasive, perpetual sense of loss of self-control.
At the same time, SUI can inhibit a sufferer's lifestyle. Relationships - and intimacy -may become constrained and a woman may feel rejected, as she tries to conceal the condition, avoid possible embarrassment and keep others from being repelled by the condition.
"Incontinence wreaks havoc on your life," says Riesa Gusewelle, an SUI sufferer. "I felt unattractive and unappealing. It stressed my sexual relationship with my husband, even though he reassured me that everything was fine. I was depressed and always felt that I could smell urine. Any bearing down motion like bending over to pick something up from the floor caused leakage. As a result, I really restricted a lot of my daily activities."
Coping Mechanisms
Stress urinary incontinence disrupts peoples' lives in both little and big ways. Sufferers tend to isolate themselves because they're afraid of having an accident in public. Women wear sanitary napkins or wads of tissues in their undergarments. Many adjust to the condition by avoiding favorite activities, like exercising, gardening or picking up a child. According to the Simon Foundation, some are afraid to venture far from home, fearful of having an accident in public. Sufferers may find themselves mapping out paths to restrooms before they leave their homes. The majority simply learn to tolerate their symptoms because they think this is something that is supposed to happen to them.
"SUI has a huge impact on a woman's self-esteem, as her most cherished relationships become affected by various coping mechanisms," says Diane Newman, MSN, and author of Managing and Treating Urinary Incontinence. "For example, a woman may decide to stay home and give up her favorite hobbies in order to avoid embarrassment. Over time, this has a devastating impact on a woman's view of herself and her life."
Doctor-Patient Communications
Many women refuse to discuss the condition with their doctors - or they wait years before doing so.
"Doctors need to know that embarrassment is a major issue for women with stress urinary incontinence," said Dr. Nicolette Horbach, Associate Clinical Professor of Obstetrics and Gynecology at George Washington University Medical Center and a practicing physician. "I personally suffered from stress incontinence following the birth of my son, and it made it difficult for me to get down on the floor and run and play with him. I tell my patients that embarrassment shouldn't stop them from living their lives."
Financial Impact of SUI: A Lifetime Medical Concern
Stress urinary incontinence also exacts a significant financial toll. Annual expenditures for SUI are similar to other chronic diseases in women. In 1995, the total societal cost of incontinence worldwide was estimated at $27.8 billion per year.6
Absorbent pads and undergarments are not inexpensive: they can cost daily users several hundred dollars or more a year. Nationally, adult incontinence products, including adult diapers, comprise a $541 million-a-year market, according to Information Resources Inc. Since these products are generally not covered by medical insurance, they can take a significant bite out of a budget.
Recently, the Society for Women's Health Research conducted a study quantifying the significant added medical costs for women treated for SUI in the United States. The findings showed that the incremental, lifetime medical cost of treating a woman with SUI is $58,000, compared to treating a woman without the condition.
"These findings show that the medical costs for treating SUI are staggering and should prompt a much needed Call to Action," said Nancy Muller, Executive Director, NAFC. "The study helps us raise awareness of the need for women to educate themselves about SUI and their potential health risks, since the condition is so prevalent among women in our society."
Consulting a Physician
To establish the SUI diagnosis, a physician will ask about a woman's medical history and urinary habits. Since this may embarrass some women, they might consider keeping a voiding diary, recording when the bladder empties and bringing it to their physicians.
Specialists, including urologists and urogynecologists, use a variety of testing methods to measure:
· The amount of urine a patient is able to retain before urinating
· The force of the urine leaving the body
· The amount of pressure within the bladder as it fills with urine
· The strength of the bladder valve muscle function
Tests commonly used to establish a diagnosis include:
· Urinalysis - examines urine for signs of infection, blood or other abnormalities
· Stress test - measures any urine loss that may occur when pressure is put on bladder muscles through common physical activity
· Urodynamic testing - examines bladder and urethral function. May involve inserting a small tube into the bladder. X-rays may also be used to visualize the bladder function.
Treatments for SUI: An Unmet Medical Need
SUI presents an unmet medical need: behavioral approaches often fail, there are currently no approved drugs to treat the condition, and surgery is often a patient's last resort.
Following are existing alternatives for SUI treatment:
· Behavioral Intervention: Physicians generally pursue non-invasive therapeutic interventions before attempting to treat SUI with surgery. Such interventions include:
o Kegel exercises: exercises designed to help women with SUI strengthen weak pelvic muscles around the bladder. Often the first line of treatment, Kegel exercises strengthen the pelvic floor muscles and assist in toning the bladder valve muscle. These are, however, difficult to perform and, because most women do not take the time necessary to ensure their success, the compliance rate is low
o Changing fluid intake: for some people, increasing or reducing fluid intake or changing the timing of fluid intake allows them to increase bladder control
o Biofeedback: electronic devices or diaries to help patients track, and ultimately control, incontinence when the bladder and urethral muscles contract. Often used in concert with Kegel exercises and electrical stimulation
o Electrical stimulation: electricity can stimulate contraction of the muscles in the lower pelvis, which reduces the symptoms of SUI
· Medications: Since no approved drugs are currently on the market to treat the condition, and medications used to treat overactive bladder are not effective in treating SUI, MDs have limited treatment options.
· Surgical intervention: surgical intervention may be appropriate for some women. In some cases, surgery may lift a bladder and/or urethra in the correct alignment and prevent the loss of urine as a result of laughing, coughing or sneezing. The invasive procedure can be performed through abdominal surgery or transvaginally. In other cases, implants are injected into the tissues around the urethra to add enough bulk to close the urethra and reduce stress incontinence. Collagen (fibrous natural tissue from cows) and fat from the patient's body have been used for implants. The procedure has only a partial success rate, and injections must be repeated after a time because the body slowly eliminates the substances.
Recently, research has uncovered evidence supporting a connection between the central nervous system and the proper functioning of the lower urinary tract. This research suggests that the central nervous system plays a critical role in regulating lower urinary tract function and control, and scientists are continuing to study this area to advance the use of pharmaceuticals to treat SUI.
First Steps: "A Call to Action, Focus on SUI"
To raise awareness of SUI and its impact - and to break down barriers to effective communication about the condition - a group of twenty influential women's health, professional and patient advocacy groups, including the American Foundation for Urologic Disease, the American Urological Association, the American College of Obstetricians and Gynecologists, the Society for Women's Health Research, and the National Women's Health Resource Center, met recently and endorsed a five-point SUI Call-to-Action. These five key points address all facets of SUI, including the emotional, psychosocial, communication, economic and treatment issues surrounding this condition.
The five points are:
· Place Stress Urinary Incontinence on a public health agenda
· Enable access to patient-friendly information
· Unite to help improve access to new and effective treatment options for women with Stress Urinary Incontinence
· Break down the barriers and sensitivity to Stress Urinary Incontinence
· Empower women with the condition to live life to the fullest
Reprinted with permission from "Euro RSCG Life NRP"
Sources
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2002 NAFC survey conducted by HarrisInteractive.
2 Voelker R, International Group Seeks to Dispel Incontinence "Taboo," JAMA, 1998, Vol. 280, No.11:951-953.
3 Stress urinary incontinence in women. Bandolier - Evidence Based Health [serial online]. November 1998; doc 57-6. Available at: http://www.jr2.ox.ac.uk/bandolier/band57/b57-6.html. Accessed August 9, 2001.
Diabetes Statistics. National Institute of Diabetes and Digestive and Kidney Diseases; National Diabetes Information Clearinghouse. Available at: http://www.niddk.nih.gov/health/diabetes/pubs/dmstats/dmstats.htm. Accessed August 9, 2001.
Health, United States, 1995. Hyattsville, MD: National Center for Health Statistics; 1996. DHSS publication 96-1232.
Bhatia SC, Bhatia SK. Depression in women: diagnostic and treatment considerations. Am Fam Physician. 1999; 60: 225-240.
4 Bump, R., Norton, P., Epidemiology of Natural History of Pelvic Floor Dysfunction, Obstetrics and Gynecology Clinics of North America, 1998, Vol.25, No.4.
5 Bump, R., Norton, P., Epidemiology of Natural History of Pelvic Floor Dysfunction, Obstetrics and Gynecology Clinics of North America, 1998, Vol.25, No.4.
6 Wagner and Hu, Economic costs of urinary incontinence. Int Urogynecol J Pelvic Floor Dysfunt; 1998, 9:127-128.