How do men perceive erectile dysfunction and its treatment? A qualitative study on opinions of men

Abstract

Introduction. Erectile dysfunction (ED) is a common medical disorder affecting the aging male. A man's perception of a disease affects his health seeking behaviour. This study aimed to explore perceptions of ED among men with ED and how these perceptions came about.

Methods. This qualitative study utilized in-depth interviews involving 17 urban men aged between 40 and 75 years old.

Results. Misconceptions existed regarding the definitions of ED. Most men perceived impotence to be more serious than ED. Although most were aware of the medical causes of ED, ‘overuse of penis’ and black magic were mentioned as culturally-related causes. ED was perceived as a serious problem associated with loss of manhood and it had a significant impact on relationships with their partners. However, some adopted an ‘accepting’ view and attributed it to aging and fate. Most men were only familiar with PDE-5 inhibitors and traditional therapies. PDE-5 inhibitors were perceived to be effective but they were concerned about side effects and costs.

Conclusions. Identifying men's perceptions of ED and its treatment would help doctors in their consultation, and inform health policy makers in planning appropriate public education and services.

Keywords:

• Erectile dysfunction
• qualitative research
• perception
• treatment

Introduction

Erectile dysfunction (ED) is a common sexual disorder affecting men. [1-3]. Although new treatments for ED have emerged for many years, this does not directly translate into men actively seeking treatment for their ED problem. A recent survey in Britain found that only 10.5% of men with sexual problems sought help [4], and elsewhere many do not seek treatment [5],[6]. As few as 11% actually receive treatment [7]. In an analysis of sexual problems in urban Asian countries, Nicolosi et al. (2005) found in his study that of the 948 men and 992 women who were sexually active and reported sexual dysfunctions, 45% did sought no help or advice and only 21% sought medical care [3]. In a cross-national survey of men aged 40 to 70 years there were marked cultural differences in the attitudes and reporting of ED [8]. In Japan, only 31% of men said they would consult a doctor or other health professional if they had ED, compared with 72%, 90% and 89% in Malaysia, Brazil and Italy, respectively. Of the 548 men who reported moderate or severe ED, no men in Japan had previously been treated compared with 6%, 19% and 2% in Malaysia, Brazil and Italy [8]. This happened despite the fact that ED was associated with poorer physical and psychological health [9]. In a recent US poll of 500 adults aged 25 years and above, more than 90% of the respondents believed that sexual difficulties caused emotional distress and depression [10]. They also believed that sexual problems were responsible for extra marital affairs and marital discord.

One of the main reasons for not seeking medical help was how men perceived ED and its treatment. Some men did not perceive ED as a medical problem [3] while others accepted it as a normal sequence of aging [11]. Their perceptions and attitudes towards ED and its treatment were partly influenced by cultural and psychosocial factors [12].

While there is a growing literature of clinical and epidemiological research on ED, exploratory research on the experiences and perceptions of men with ED remained scarce [13]. Therefore, this paper aimed to identify and explore the understanding and perceptions of ED and its treatment among men with ED using an exploratory qualitative approach.

Methods

This study employed a qualitative research method to examine men's perceptions and experiences of his health problem. Qualitative study, as oppose to quantitative study, aims to develop concepts which help us to understand social phenomena in natural settings rather than experimental settings. It involves an interpretative naturalistic approach of its subject matter. Qualitative researchers attempt to make sense or interpret phenomena in terms of the meanings people bring to them [14]. It emphasizes meanings, experiences and views of the participants, in this case, men with erectile dysfunction. In-depth interview (IDI) is a useful qualitative method which has been used to explore the experiences, beliefs, feelings and knowledge of interviewees [15]. As this study examined sensitive and intimate aspects of men's lives, IDI conducted on a one-to-one basis ensured confidentiality and provided a conducive environment for the interview to be carried out [16].

This study was conducted in Klang Valley, which is an urban area in Malaysia. We used purposive sampling to recruit participants based on the following criteria: men aged 40–75 years (mean = 56). All men were married except one. The participants were screened and categorized using the International Index for Erectile Function (IIEF-5) questionnaire [17]. Men with self-reported ED for at least six months and had an IIEF-5 score below 21 were diagnosed as having ED. This sampling method did not aim to produce a statistically representative sample since they rely upon social contacts between individuals to trace additional respondents [18]. We anticipated that ED is a sensitive issue and steps were taken to ensure confidentiality.

This study used a semi-structured interview guide as the research instrument to explore men's understanding of ED, causes of ED, their personal feelings towards ED, impacts on their well-being and experiences with treatments. All interviewers were men who had attended two training workshops conducted by the researchers. This study obtained ethical approval from the Medical Ethics Committee of University of Malaya Medical Centre, Kuala Lumpur.

Written informed consent was obtained from all participants. All interviews were tape recorded and transcribed in verbatim. The researchers checked the transcripts independently to ensure consistencies. All transcripts were analysed to generate categories and themes of men's perceptions and experiences of ED [19],[20]. The analysis process was repeated until all researchers agreed that saturation point had been reached and no additional new themes emerged. This occurred after 17 interviews. Management of data was done using a qualitative data management software NUD*IST Version 6.0™[21]. The quotes included in this paper were typical views expressed by the participants and they exemplified emergent themes.

Results

Terminologies and definitions of erectile dysfunction

Different terminologies of ED were used in different ethnic groups. It reflected cultural differences in the perceptions of ED. Chinese used terms such as ‘yang wei’, ‘bu j’“cannot rise', ‘not hard’, ‘inability to perform sex’. The Malays referred to ED as ‘mati pucuk’ (dead shoot). However, some could not differentiate it from ‘lemah tenaga batin’ (lack of libido).

The participants used different terminologies to represent different severity of ED. For instance, impotence was viewed as a more serious condition compared to ED.

Moderator: So, you think impotence and ED are two very different things?

Participant: Impotence, it's just dead. I don't think it can ever function, even if you take Viagra. I'm talking of that kind of problem … so bad because if you are impotent, you are gone. (57 years old, Indian man, mild ED)

Some men confused ED with other medical conditions such as loss of libido, premature ejaculation, anejaculation and castration.

I feel that I have lost something. It (ED) does affect me, but it is not important in life. I mean, I'm not impotent, you know. I do not need any artificial drugs to arouse me. I'm not impotent to the extent that it doesn't function. (57 years old, Indian man, mild ED)

Causes of ED

Most participants associated ED with medical conditions such as diabetes, hypertension, side effects of medication, smoking, injuries as well as psychosocial factors such as life stresses and relationship problems. They explained the pathophysiology of ED in terms of ‘lack of circulation to the penis’. Food, aging and sexually transmitted disease were also cited as causes of ED.

In a multicultural society like Malaysia, the perception of health and illness is heavily influenced by cultural beliefs. Health beliefs such as black magic and overuse of penis were cited as causes of ED.

This is done by the ‘bomoh’ (Malay traditional health practitioner), he can shut our sexual desire, kill our desire. (55 years old, Malay man, moderate ED)

You see, it all depends how much he makes use of this [penis]. The more you use, the faster it [penis] deteriorates. (67 years old, Indian man, severe ED)

Perception of ED

ED was perceived as a loss of manhood as the ability to perform sex was an important component of manhood.

Well, most people feel, it's a major loss of manhood. A man is no longer a man if he is not able to function. I think it's the way we were brought up. Most of us feel that we're no longer a man, if you're not able to do that. (62 years old, Chinese man, moderate ED)

This (ED) is something people lie about. They are not brave enough to tell the truth or to see a doctor. It's like a stigma. Asians' society. Hurts male ego. (57 years old, Indian man, mild ED)

Age was an important consideration in the perception of ED. Generally, sexual expectation decreased with age but sex was an important part of men's life regardless of age. Therefore, ED was felt to be unacceptable in men.

I can't accept it as a normal condition. We all know that the men even at the age of late 60s or 70s, you know, we can have a fairly active sexual life. Some of them even get married and reproduce at that age. So, that's why I feel at my age of 52, it is not a normal condition for a person like me. I don't consider myself as suffering from any major ailment in the past or anything of that sort. I can't satisfy myself because of that. This thing shouldn't happen at my age. (52 years old, Indian man, severe ED)

However, some men had learned to accept it using reasons like ‘God's will’.

Our manhood, our problem because we have got wife. Because of our condition, we can't give or satisfy her desire. We want to give, but we can't. We think a lot about it but no point. This is all God's power. (46 years old, Malay man, severe ED)

Impact of ED

The impact of ED permeated different aspects of men's lives. Men with ED felt insecure in maintaining a stable and satisfying relationship with their partners. ED also put a dent in their confidence and this in turn affected their family, work and social lives.

I still feel very frustrated that I am unable to really function properly as a husband … to give my wife full sexual satisfaction she would expect from a husband. (59 years old Chinese man, mild ED)

It's eating into you. You feel that you are a little disappointed with life. Looking at my wife, she thinks less of me as I am not in my full manhood anymore. Also, I have a suspicious feeling that she likes me in this condition because she has menopause. That really annoys me! (66 years old, Malay man, severe ED)

The children will also be affected. How do you know? As what you have said how mental these things are. The frustration comes in and they vent their frustration on the children by scolding them. So, their families will also be affected indirectly. (67 years old, Indian man, severe ED)

Perception of and experience with ED treatment

Men in this study were familiar with PDE-5 inhibitors and traditional therapies, but less aware of other treatment modalities such as vacuum device and injections.

PDE-5 Inhibitors

For men who had positive experience with PDE-5 inhibitors, they became more confident and had improved relationships with their partners.

Well … it's like you're walking around with a loaded gun. You feel more confident of yourself. (62 years old, Chinese man, moderate ED)

However, they also pointed out their reservations in terms of cost, side effects, fear of addiction, partners' disapproval of them taking PDE-5 inhibitors.

Cost of PDE-5 inhibitor was repeatedly highlighted as an important factor that influenced men's decision to use the drug. As a result, men limited their usage and sometimes saved cost by cutting the pill into two. The participants also bought generic PDE-5 inhibitors, which were cheaper and were made available through parallel import.

Well, it will burn a hole in the pocket. It is so expensive and it is not essential at my age. It is not an essential … product. You know, like I won't drop dead without it if I stop taking it. (52 years old, Indian man, severe ED)

38 ringgit [US$10]. As big as this … like the shape of this nail. But … Viagra had two factories, the one that I'm consuming is from Germany. Another one is made in India. The one made in India is cheaper. (51 years old, Malay man, moderate ED)

While many agreed that PDE-5 inhibitor was the best treatment available currently, a few men felt that their erections were unnatural. This could be an expression of anxiety over the loss of control over their bodies. It was also perceived to be potent medication which might cause harm, even death.

Of course, the disadvantage is that it is sometimes quite unnatural in that sense, even after having sexual intercourse, the erection still remains which is quite unnatural and this causes some fear. It is very unnatural, after the sperm has been discharged, the erection is supposed to go away or not so strong, you know. (52 years old, Indian man, severe ED)

The side effects … for example … Viagra is like raising the dead with power, with energy. So, I feel it will cause dizziness, high blood pressure because Viagra is like power. It is to raise the dead to life. Its power is strong. As we age, consume those things (PDE-5), the side effects will be a lot, that's my opinion. (46 years old, Malay man, severe ED)

Some men were concerned about the effects of prolonged erection while others commented on the delay in onset of action, which affected the spontaneity of sexual activities.

The satisfaction with PDE-5 inhibitors was associated with men's expectations. A participant wished that the medication would allow his erection to last as long as he desired.

What I really want is the extension of the erection. You get what I mean. It's not so much to make it erect. It's the time, to extend the duration. That's what I'm more interested in … it doesn't stay there for as long as I would desire. (59 years old, Chinese man, moderate ED)

A number of men did not discuss with their spouses regarding the use of PDE-5 inhibitors. They were concerned that their spouses would disapprove and become suspicious of them having extra-marital relationships.

… The other thing is that women also believe that if you have a loaded gun [erected penis], you would want to shoot. If they are not around, they'll be worried you'll be shooting someone else. (62 years old, Chinese man, moderate ED)

Traditional Therapies. Most men were aware of traditional treatment, including animal products (e.g. deer and tiger penises), Chinese herbs (e.g. lin zi, ginseng), Malay herbs (e.g. tongkat ali, ma'jun, gambit), honey mixed with egg (commonly used among Malays) and massage. Traditional medications were commonly used to improve general health and treat diseases in the local community. The most popular traditional treatment was tongkat ali which was a local herbal preparation used to improve sexual functions. It was perceived to be safe but not efficacious. Some men were concerned about the safety profile of other traditional treatments.

The only traditional medicine I know is tongkat ali. But, tongkat ali being a herb should be okay, that's why I dare to try it. Personally, I would not try any strange medicine. Like they used to have this medication where you rub it on your sexual organ to make it erect and to make it to last longer but I never tried it, I am very scared about all these things … All these are untested scientific things. So you can have some side effects. (59 years old, Chinese man, mild ED)

Discussion

This study found that the perceptions of ED among Asian men were influenced by their cultures and health beliefs. In general, ED was perceived to be an important loss in their lives as sexual performance was closely related to manhood. The degree of ED, age and faith determined their acceptability of the disease. In this study, men's understanding of ED treatments were restricted to PDE-5 inhibitors and traditional therapies. Although PDE-5 inhibitors were perceived to be effective, they were concerned about their safety and costs.

Most men associated ED with loss of masculinity and self-esteem. It has been generally perceived that the healthy and functioning male body must be capable of producing normal erections to deliver sexual satisfaction for both man and his partner. The loss of erectile function has therefore become synonymous with the loss of manhood [22]. Although sexual function is an essential part of manhood, some have learned to cope with ED rather than to seek help. This was observed particularly among older men, who attributed their decreased sexual capacities and erection difficulties to aging, and therefore conditioned themselves to accepting it. In contrast, younger men who have erectile difficulties are considered as ‘abnormal’. Therefore, they are more likely to seek help and receive treatment for their sexual problem. Moreover, ED is perceived to be more devastating for younger men as it is connected with the fertility issue [23].

Men's knowledge of and experience with modern treatments of ED were mainly associated with PDE-5 inhibitors. Their perception towards PDE-5 inhibitors was largely influenced by personal experience, information from mass media and friends. Similar to other studies, high cost and fear of side effects were two main deterrents in the use of PDE-5 inhibitors. There were also concerns of the presence of counterfeits in the country, which might pose dangers to consumers. The mass media publicity of ED and its treatment might draw unrealistic expectations and a quick fix mentality among men [22]. However, most men in our study were more concerned about the side effects rather than the lack of efficacy of the drug.

Involvement of partners in the discussion of men's sexual problem has been found to improve the treatment outcome and enhance relationships. Cayan et al. (2004) noted that female partners play a crucial role in male erectile dysfunction evaluation and treatment [24]. However, many men in our study had conceded their use of PDE-5 inhibitors without their partners' knowledge. They worried that their partners would view the matter with suspicion and mistrust. Similarly, Potts et al. (2004) in their study found that both men and women voiced concern about how the use of PDE-5 inhibitors might encourage men's engagement in promiscuity because of the restoration and enhancement of their virility [25]. A local study found that all women viewed their husbands taking PDE-5 inhibitors with suspicion [26]. They were concerned that their husbands would have extramarital affairs or take the opportunity to marry a younger woman.

Through the accounts of these men, we have identified further research in this area. In particular, it will be important to explore the major influences in men's decision making to seek treatment and their choice of different treatment options; what impact these decisions have on them and their partners; how men and their partners cope with ED prior to and after treatment.

Limitations of the study

This study used a convenient sampling method which would attract men who were more open-minded toward sexual problems. This might miss out men who were more conservative. However, the purpose of this study was not to generalize, but to generate themes which were important to men in that particular setting.

Implications for clinical practice

Erectile dysfunction has a major psychosocial impact on men. Thus, it is crucial to seek medical treatment at the early stages of their problem. Men's perceptions about ED play an important role in determining whether they would seek treatment for their ED. Similarly, Fisher et al. (2004) in their study on understanding PDE-5 inhibitor treatment seeking patterns among men with ED, found that perceived ED severity, beliefs about ED, and referent influences are strongly correlated with utilization of PDE-5 inhibitor [27]. They further suggested that the understanding of these factors that may incline men with ED to seek or avoid PDE-5 inhibitor therapy for their sexual dysfunction could provide a basis for educational interventions. Some misconceptions and myths about ED and its treatment still exist, hence, public education would be useful to rectify these negative perceptions. Recognizing attitudes that might impede treatment seeking or compliance will help the physician accommodate patients' personal preferences and is likely to improve patient satisfaction and quality of life [7]. In this aspect, the role of physicians is important. The physician should be trained to approach sexual problems in a more gender-sensitive manner. In particular, there is a need for doctors to initiate discussion on sexual issues as previous research had shown that patients tend to play a passive role and would prefer their doctors to initiate the discussion [28],[29]. The doctor should also explore men's cultural background in order to effectively address their concerns and manage their ED holistically.

Acknowledgements

We are grateful to all participants in this study. This is part of a collaboration study between Malaysia, Taiwan and Korea. The study is funded via an educational grant from GlaxoSmithKline Asia Pacific.