The psychosocial impact of urinary incontinence in women
Please cite this article as: Sinclair AJ, Ramsay IN. The psychosocial impact of urinary incontinence in women. The Obstetrician & Gynaecologist 2011;13:143–148.
- • Women with urinary incontinence have a significantly poorer quality of life than their continent counterparts.
- • Between 25–50% of women with urinary incontinence experience sexual dysfunction.
- • Urinary incontinence commonly leaves the sufferer with psychological morbidity, particularly depression.
- • Women with an overactive bladder are likely to suffer greater psychological distress than those with stress incontinence.
- • Up to 23% of women take time off work because of their incontinence.
- • To understand how urinary incontinence impacts upon all aspects of a woman's life.
- • To know how quality of life can be measured in women with incontinence.
- • To learn how the type of incontinence can influence a woman's quality of life.
- • Is it unethical to treat a woman for incontinence without assessing her quality of life, sexual function and relationship problems?
- • Is it ethical to assess new products for incontinence with urodynamic rather than behavioural and quality-of-life parameters?
The literature published over the last three centuries has demonstrated that urinary incontinence, while not a life-threatening condition, has the potential to have a negative impact on the psychological health of women and to hinder aspects of daily living, thereby having a detrimental effect on quality of life.1–4 The condition has been shown to affect areas such as relationships, work, travel, sports and hobbies.
The published literature on bladder problems and their treatment previously focused on objective assessments of bladder function, notably urodynamic parameters. These were used as a proxy for the amount of bother a sufferer of incontinence experienced and to determine the extent to which treatments improved outcomes. However, it is what a woman feels that is important, as well as how a problem impacts upon her life and those around her.
The aim of this article is to review the current literature on the psychosocial impact of urinary incontinence on all aspects of women's lives. This will allow us to better understand their concerns, assess their problems and improve their quality of life while they live with this debilitating condition.
Types of incontinence
The International Continence Society (ICS) defines urinary incontinence as the complaint of any involuntary leakage of urine. It is estimated that up to 50% of women experience urinary incontinence at some point in their lifetime, but the condition remains under-reported to medical practitioners.5
There are two main types of urinary incontinence in women (see Box 1): stress incontinence and urge incontinence secondary to an overactive bladder. The type determines the symptoms experienced and the treatment required. Of equal importance, however, is that it influences the psychological distress suffered and, ultimately, the effects on the woman's quality of life. Stress urinary incontinence is defined by the ICS as the observation of involuntary leakage from the urethra, synchronous with exertion/effort or sneezing or coughing. This is usually due to pelvic floor weakness or prolapse. Patients with an overactive bladder are defined by the ICS as having urgency, with or without incontinence, usually with frequency and nocturia; they typically complain of an overwhelming and urgent need to urinate. Uncontrolled leakage or complete emptying of the bladder often follows the urgency: this is due to overactivity of the detrusor muscle. As outlined below, these two conditions have varying effects upon a woman's lifestyle. The two commonest types of incontinence are described in Box 1.
Table Box 1.
The two main types of urinary incontinence in women
| • Involuntary leakage from the urethra during exertion, sneezing or coughing|
| • Usually due to pelvic floor weakness or prolapse|
|Urge incontinence secondary to an overactive bladder|
| • Urgency, with or without incontinence, and possible frequency and nocturia|
| • Overwhelming and urgent need to urinate followed by uncontrolled leakage or complete emptying of the bladder|
Incontinence has the capacity to affect all aspects of women's health, both physical and psychological. Women living with urinary incontinence have been shown to have a significantly lower quality of life compared with those who are continent.2,6 The condition has been associated with sexual dysfunction,7,8 relationship problems,7,8 withdrawal from sport and exercise,3 travel restrictions,3 major depression and social isolation.9
Impact on quality of life
Although both stress incontinence and overactive bladder are treatable with physiotherapy, medication or surgery, there remains a profound stigma and feeling of humiliation attached to these conditions. It seems that the main impact urinary incontinence has on women's lives, in terms of social and recreational withdrawal, stems from the fear and anxiety related to becoming incontinent in public and the possibility that others may find out, rather than distress related to the leakage of urine itself.3 The psychological impact of this condition must neither be underestimated nor ignored.
The effect that urinary incontinence has on daily life can differ greatly, depending on the aetiology and severity of the condition and, equally, individual personality and coping strategies.6 Evidence suggests that people with urge incontinence or overactive bladder suffer greater psychological distress and anxiety than those with stress incontinence.6 Barber et al.8 hypothesised that this was due to the unpredictable nature of detrusor overactivity, the symptoms experienced and the often large volumes of urine leakage. This statement cannot be applied universally, as no two women have the same experience and variables such as personality have the potential to shape each individual's unique experience of the condition. This reiterates the importance of maintaining a holistic approach to treatment, thus allowing effective identification and treatment of individual requirements, both physical and psychological. Several areas of life that are affected by urinary incontinence are discussed below and summarised in Box 2.
Table Box 2.
Ways in which urinary incontinence can affect women's quality of life
|Emotional life||• Feelings of stigma and humiliation|
|• Social and recreational withdrawal|
|• Fear and anxiety related to being incontinent in public|
|Relationships||• Reduced intimacy, affection and physical proximity|
|• Marriage breakdown and subsequent divorce|
|Exercise and sport||• A barrier to exercise: a particular problem in mixed incontinence|
|Employment||• Loss of concentration and ability to perform physical tasks|
|• Interruption of work for toilet breaks|
|• Absence from work|
|Travel and holidays||• Reluctance to visit new places|
|• Need to pack protective materials, think of ways to dispose of used pads|
|Sleep||• The quality and amount of sleep is affected, especially in women with an overactive bladder|
|• Women may be woken up several times a night and there may be enuresis or incontinence on the way to the bathroom|
|• Nocturia is a common symptom of an overactive bladder|
|• Risk of falling, especially in the elderly|
The relationships of couples can be significantly affected by urinary incontinence. Nilsson et al. 2 showed that 38% of women and 32% of men reported that the female partner's incontinence impacted negatively on their relationship. Furthermore, 20% of women and 17% of men reported reduced intimacy, affection and physical proximity. One quotation from the study which illustrates these statistics reads: ‘I become nervous and cannot actually relax. I am anxious about smelling bad and urine leakage when we are closely intimate’. Norton et al.11 are the only investigators to look specifically at divorce as an issue relating to incontinence. They showed that when specifically asked several women said that they felt that their incontinence had been a factor in their marriage breakdown and subsequent divorce; others feared that without a cure for their incontinence their marriage might be in jeopardy. This shows that suffering from incontinence may have an even higher cost in psychosocial terms than most of us can imagine.
Exercise and sport
These are hobbies commonly enjoyed by many women, offering a way to keep fit and an opportunity for social interaction. However, this is another key area of daily living affected in women who experience urinary incontinence, who are often forced to give up activities such as swimming, dancing, long walks and gymnastics.12 This is reportedly due to a fear that others will discover their condition.3 Nygaard et al.13 asked whether urinary incontinence was a barrier to exercise. More than one-quarter of women in this study who reported being incontinent of urine at least monthly experienced leakage during exercise and a similar proportion regarded the leakage to be a moderate barrier to exercise. Of further note is that women with mixed incontinence perceived their urine leakage to be a greater barrier to exercise than those with pure stress or urge incontinence. This was attributed to them having to deal with the challenge of leaking urine during exercise and having to find a toilet urgently. Maintenance of adequate activity levels and successful ageing have been linked.1 In a world where obesity is a major health problem, exercise is of extreme importance. Women suffering from urinary incontinence are being forced to give up such activities due to the psychological distress they experience and by doing so they ultimately lead a more sedentary lifestyle. Obese women with urinary incontinence can find themselves stuck in a vicious cycle. They are often advised to lose weight before undergoing surgery, but they cannot exercise due to their urine leakage during physical activity. They therefore abstain from exercising and are more likely to gain weight, postponing their surgery for incontinence further.
The wider health implications for these women are of even more concern. They are potentially increasing their risk of developing other more serious and costly medical conditions such as type II diabetes and ischaemic heart disease.1 It is vital, therefore, that healthcare practitioners educate them on the importance of maintaining activity levels where possible.
Urinary incontinence is common among employed women and has a potential impact on working life and performance. In 2005, Fultz et al.14 studied the prevalence and management of incontinence in the workplace. Symptoms of urinary incontinence were shown to cause occupational restriction as a result of worries regarding feeling wet and smelling of urine. These concerns can lead to loss of concentration (19%), loss of ability to perform physical tasks (29%) and interruption of work for toilet breaks (34%). Ultimately, each of these has a negative impact on women's work performance and, of equal importance, their self-confidence at work. It was also shown that urinary incontinence is, indeed, common at work: 37% of employed women reporting urine leakage at work within the previous month; within this group 21% leaked urine weekly and 8% daily while at work. It was also seen that the negative impact that urinary incontinence had on the working life of women increased as the severity of urinary symptoms increased.
It is suggested that educating workers at all levels of organisations about urinary incontinence would reduce embarrassment, aid communication and inform women about the treatments available. Nygaard et al.13 studied the indirect costs of urinary incontinence in relation to time missed from work. Twenty-three percent of women had missed work due to their condition. The average annual absence from work for these incontinent women was 28.7 hours. Thus urinary incontinence has a detrimental effect upon both work attendance and performance.
Travel and holidays
Travelling or going on holiday can be a stressful time for anyone. For women suffering from urinary incontinence, what should be an enjoyable trip can often become a daunting and traumatic experience. These women often feel reluctant to visit new places and worry that there will be no toilets nearby or that there will be no bathroom facilities at all.3 Queuing at public toilets is a concern and travel on transport without toilet facilities can seem like a nightmare. This concern is more common in women suffering from an overactive bladder, as the worry of urgency and urge incontinence without access to a toilet worsens the condition and a vicious cycle develops. The end result of all of these concerns is that the woman is likely to stay at home and not travel.
There are also practical issues in relation to travel. These include the need to pack protective materials such as sanitary pads, in case of urine leakage, thinking of a way to dispose of used pads and the need to change into dry clothing. Each of the points mentioned above demonstrates the degree to which urinary incontinence has a potential impact: it is an inconvenience for these women and they may become reluctant to travel.
The quality and amount of sleep is most negatively affected in those suffering from an overactive bladder. Women may be woken up several times a night with the urgent need to urinate and they may not always make it to the bathroom in time, either wetting the bed (enuresis) or being incontinent on the way to the bathroom. Even in the absence of real urgency, nocturia is a common (and occasionally the only) symptom of an overactive bladder. As well as the sleep disturbance caused by getting up several times per night, there is a risk of falling, especially in the elderly, with the potential for fracturing the neck of femur and all its associated morbidity and mortality.
Women suffering from stress incontinence may feel uncomfortable if they leak urine while in bed; for example when turning over, changing position or coughing. Furthermore, wearing protective pads in bed can be uncomfortable and irritating, which can have a negative impact on the quality of sleep.
Léger et al. explored the impact of sleep deprivation on daytime functioning and quality of life.15 They showed that people with sleep disturbance reported a higher incidence of reduced concentration on tasks, reduced effectiveness at work and a reduction in normal activity. They also demonstrated a significantly lower quality of life. We must not underestimate the impact of incontinence on sleep quality and quantity, plus its potential to influence negatively other important aspects of women's daily lives.
Assessment of quality of life
It is very important to consider and assess the impact incontinence has on daily living and thus the quality of life. There are numerous assessment tools; those which feature most frequently in the recent literature include generic questionnaires such as the WHODAS II,8 the Nottingham Health Profile and the Sickness Impact Profile,4 which allow comparison between different diseases but which are not sensitive when applied to urinary incontinence, which is not a life-threatening condition. Disease-specific questionnaires have the potential for greater sensitivity; examples include the Incontinence Impact Questionnaire,1 the Incontinence Quality of Life Instrument,1 the King's Health Questionnaire10 and the Bristol Female Lower Urinary Tract Symptoms (B-FLUTS) questionnaire.2 These are beneficial for determining whether treatment is required and, ultimately, for gauging the success of treatments in terms of improvement in women's quality of life, which is of major importance to them.
Sexual dysfunction is a common complaint among women suffering from urinary incontinence.8 Among women who seek medical help, 25–50% report problems associated with sexual function, including decreased sexual desire, anorgasmia and dyspareunia.8 Sutherst16 reported that 46% of women suffering from urinary incontinence said their symptoms negatively impacted on their sexual function, thus reducing the frequency of sexual intercourse. Symptoms reported included dyspareunia, leaking during coitus, embarrassment and depression.17 In addition, this study revealed that women suffering from urge incontinence experienced greater difficulties with sexual incontinence than women with stress incontinence. Norton et al.18 showed that 38% of 201 women attending a UK clinic with urinary incontinence reported avoiding sexual intercourse due to their condition.18
Assessment of sexual function
The best way to assess for abnormalities in sexual function in women is to use a validated questionnaire. The Female Sexual Function Index (FSFI)19 is a comprehensive 19-item tool which assesses six domains of sexual function: desire, arousal, lubrication, orgasm, satisfaction and pain. Each item is scored from 0 or 1 to 5 (0 = not sexually active; 1 = rarely/occasionally; 2 = less than half of the time; 3 = sometimes/half the time; 4 = more than half the time; 5 = almost always). To calculate each domain score, the scores of the related items are summed and the result multiplied by a certain coefficient. Consequently, the maximum domain score is 6; the lowest is 0 for four domains and 0.8 and 1.2 for two domains. The total FSFI score is calculated by adding together the mean scores of all six domains. The maximum possible score is 36 and the lowest is 2.
As demonstrated above, urinary incontinence can have a negative impact on many aspects of daily living. Psychological morbidity is common in women with urinary incontinence and is likely to result directly from the impact on quality of life.6 These women often report having low self-confidence, feeling ashamed and embarrassed and feeling unattractive to others.20 Each of these is an obstacle to good psychological well-being.20 There is also a wealth of evidence that women with incontinence have coexisting psychiatric illnesses.21
The majority of psychological illnesses in these women are the more neurotic or less severe disorders: these have been shown to be as high as 30%, i.e. two to three times that of the background population.22 Perhaps of more concern is that there is a body of evidence supporting an association between major depression and urinary incontinence.23,24 Melville et al.23 showed that major depression was three times more common in women with urinary incontinence than in continent women (6.1% versus 2.2%). Likewise, Morrison et al.22 showed a rate of major depression of 11.6% in a group of incontinent women compared with a background rate of 1% in their population. It is very important that we are aware of this potential, as major depression needs prompt and specialised treatment if serious consequences are to be avoided.
Melville et al.23 also concluded that comorbid depression impacts on women's perception and reporting of urinary symptoms. Women with depression rated the severity of their incontinence and its impact on their quality of life and functional capacity higher than those with a similar clinical picture who did not have depression.23 This is an important point to consider, as comorbid depression can augment the feelings of low self-esteem and embarrassment associated with incontinence, leading to increased social withdrawal.6 It is, therefore, vital to screen for and treat comorbid depression in women with urinary incontinence. By doing this and improving their psychological health, this is likely to have a positive impact on their self-esteem, perception of symptoms and satisfaction with treatment and contribute to an overall perceived improvement in quality of life.6,24
The association between psychiatric illness and incontinence is thought to be multidirectional.22 Historically it was felt that neurotic and anxiety states were the cause of unstable bladder contractions and urge incontinence25 and there is certainly a neuropharmacological hypothesis to explain this: urge incontinence has been associated with alterations in neurotransmitters, leading to uninhibited contractions of the detrusor muscle.22 Evidence from neuropharmacological studies has shown that some forms of depression and anxiety are linked to diminished serotonergic function, potentially causing an overall net reduction in inhibition of bladder contractions and resulting in an overactive bladder.24 Others have shown that psychiatric morbidity is present in both sufferers of stress incontinence and overactive bladder syndrome, equally suggesting that at least some of the psychiatric condition is the result of longstanding incontinence.26
Incontinent women are burdened with anxieties and feelings of embarrassment and shame and they live in constant fear that others will discover their condition. Women's sexual function and relationships with their partners are significantly affected by their incontinence, thus augmenting their feelings of low self-confidence. Furthermore, major depression has been shown to be more common in incontinent women, adding to the cycle of low self-esteem, increased social withdrawal and, ultimately, a reduction in quality of life.
As carers we must be prepared to discuss all aspects of women's lives in order to ascertain all their concerns. We need to assess their quality of life before and after treatment in order to gauge their success in relation to what is of most importance to them. We must diagnose psychiatric disease and treat it appropriately. Women must be educated on the wider health implications relating to their condition and the impact it has on their lives; for example, emphasising the importance of getting enough exercise is vital. Each of these suggestions is a simple, cheap measure which, if used effectively, can improve the assessment and management of incontinent women. This can empower women to live active, normal lives and minimise the psychological distress associated with what is a potentially debilitating condition.