Category Archives: Hypospadias support

Chapter 3: Psychological Aspects of Hypospadias (part 2)


  1. Synthesis of the two studies

Paucity of literature  

According to the authors, in contrast to the abundance of literature on the medical side, very little scientific research has been carried out on the possible long-term psychological impact of hypospadias and surgery on the lives of the individuals concerned.

4.2. Offering professional psychological support

The studies carried out by the Swedish research team at the beginning of the 1980’s referred to several psychological, psychosocial and psychosexual  difficulties that can arise after hypospadias surgery. The authors highlighted the fact that the later development of boys operated on for hypospadias could be influenced by factors in the environment such as the reaction of parents and peers.

This team stressed the importance of psychological support which could be offered at an early stage to the parents of children with hypospadias and to the children themselves, in order to avoid adding a ‘psychological handicap’ (Berg et al., 1982, p. 411) to their ‘physical handicap’.

The series of studies produced by the Dutch research team also included a series of observations and conclusions concerning the psychological impact of hypospadias and its repercussions on psychosocial and psychosexual development. The authors remind us that, despite constant progress in this field, hypospadias surgery does not give a perfectly normal appearance to the penis (Mureau et al., 1997, 1995c). The majority of patients continued to perceive differences between the appearance of their own penis and that of others: they were more dissatisfied with the appearance of their penis, and had more often received comments about it; they were more self-conscious and embarrassed by the appearance of their genitals, which led to inhibitions in seeking out sexual relationships. They were also more inhibited in undressing in front of other people (e.g. in showers or communal changing rooms).

Mureau et al. (1995c) also included some comments on the importance of being able to offer psychological and/or professional sexual therapeutic support to both parents and the patients.

In conclusion, both series of studies show that although surgical treatment is effective in re-establishing varying degrees of functional and aesthetic normality to the penis, it is still always possible that emotional difficulties will persist.

4.3. Another risk factor: the secret of hypospadias

Other factors contribute to a patient’s capacity to face up to his hypospadias: as mentioned by the Dutch researchers, more often than not there is a lack of information and explanation from the medical community, for both parents and the patients themselves.

But the emotional consequences of a condition such as hypospadias are equally affected by a lack of discussion within the family. Thirty years ago, Robertson & Walker (1975) reported that that hypospadias was regarded, by the parents and the child, as ‘secret information’. The secret, in the context of hypospadias, referred to the existence of a penis which was not completely perfect; this situation was shared neither with friends, nor close relations, nor even in the bosom of the immediate family.

  1. A qualitative research project (United States, 1998)

The two series of studies already presented were quantitative in nature. As far as I know, there is no qualitative research published in journals. Nevertheless, I have located a doctoral thesis on the psychology of hypospadias (unpublished). I present here, broadly, why and how this research was carried out, and its results and implications.

5.1. The subjects investigated

Walker’s (1998) doctoral thesis aimed to thoroughly examine the psychological experience of living with hypospadias as an adult. Being affected personally by hypospadias, Walker knew that this condition and the related surgery had profoundly affected his existence during both childhood and adulthood; this experience of hypospadias was a powerful motivation to explore and so better understand the experience of others in the same situation. The objective of his research was to view the lives of men with hypospadias in a holistic manner (physical, psychological, creative and spiritual), so he could better understand the role which hypospadias had played in their lives. His approach acknowledges the whole person, as well as the deficiency.

5.2. Research method used

Walker (1998) used a qualitative research method. More precisely, this researcher adopted a method known as heuristic, an approach used in social science which requires the participation and involvement of the researcher at the center of the research. The direct experience of the researcher regarding the topic being investigated is one of the principal requirements of the heuristic method (Moustakas, 1990, cited in Walker, 1998). This researcher chose this approach since it allowed him to study the phenomenon of hypospadias while being personally affected by it.

5.3. Participants in the research

The participants in Walker’s (1998) research came from a support group for hypospadias which existed on the internet at the time. The researcher had himself been active in the support group and it was in this way that he gradually chose 5 participants affected by hypospadias [51]. The participants were aged between 23 and 47 years and came from different regions of the United States.

The medical characteristics of the participants at birth was varied. They ranged from penoscrotal hypospadias (posterior form), to balano-preputial hypospadias (anterior form). All except one participant, including the author, had experienced surgical repair (some more than once). The operations took place between the ages of 3 and 9.

5.4. Some results

According to Walker (1998), the manner in which each participant reacted to surgery (from infancy to childhood) as well as to post-operative care from the family and the medical community, was different. However, this researcher was able to observe some common experiences among all the participants. Some of these experiences are presented here (see Walker, 1998, pp.97-100).

5.4.1. Lack of emotional support

One of the experiences common to all the participants was that they had not been emotionally supported by their families, nor had they benefited from any support from the medical profession. As children, they had been given little or no information, and no opportunities to talk about hypospadias.

5.4.2. Feeling different and keeping hypospadias a secret

All the participants said that they felt they were in some way ‘different’, partly as a result of the lack of information and discussion by the family and medical community. They also felt that they could not talk about this feeling of difference. This led them to hide their thoughts and feelings about this perceived difference, which engendered a kind of ‘secret life’ about the difference in their penis. This decision to ‘hide’ their difference intensified as they became adolescent, that is to say when their sexual awareness began to emerge.

5.4.3. Feelings of embarrassment

A common theme which stands out in the stories of the participants was feeling uncomfortable talking about sexuality. Equally it emerged that they were conscious of an uncertainty and embarrassment regarding their genital difference and their capacity to have normal sexual relations. The participants reported feeling sexually inadequate and anxious during their adolescence. Some of them had been stigmatized by comments from their peers about the appearance of their penis.

5.4.4. Shame and poor self-esteem

The participants reported having become timid and socially introverted during adolescence. It was also during this period that the first signs of ‘shame’ and a lowering of self-esteem became apparent [52].

5.4.5. Anxieties and fear of sexual intimacy

Having had different emotional and psychological experiences during adolescence due to hypospadias, each participant went through, in their own way, a ‘crisis’ on reaching adulthood. This crisis related to their sexual, personal and social identity. Their feelings of sexual inadequacy which emerged during adolescence, now evolved into a fear of sexual intimacy and difficulty in opening up emotionally and sexually towards their sexual partner. Moreover, they encountered difficulties in trusting others.

5.4.6. Solitude, isolation and mistrust   

Another experience commonly reported by the participants, as adults, was related to feeling alone and emotionally isolated. This led to their feelings of shame, difference and abnormality being further intensified.

5.4.7. Feelings of loss and incomplete masculinity

In response to their impression of being deficient with regard to their genitals, the participants felt that as men they were not totally complete. In some cases, they even developed a distorted body image. This affected their self-identity and self-worth.

5.4.8. Personal growth, acceptance of self and body

Despite difficult experiences, both emotional and psychological, in living with hypospadias, each of the participants described a process of personal recovery and psychological or even spiritual healing. These common experiences of recovery happened after experiencing an extreme level of physical and psychological suffering. This process of recuperation has been described as being a kind of ‘understanding of their experience of hypospadias’ which permitted them to live with their condition in a more effective way.

Each of the participants described, in his own manner, a way of learning to accept himself and accept his body. This kind of acceptance happened, for example, through: a helper or supporter from a spiritual program, different modes of therapy, or though a creative involvement in art and the use of a man’s imagination.

5.4.9. Support from other men with hypospadias

All the participants expressed an increased need to enter into contact with other men who had hypospadias, with the aims of finding mutual support, coming to a better self-acceptance, having an opportunity to reveal themselves (as having hypospadias), and telling their story to other men in a similar situation.

One of the topics most often raised by all the participants was the need to make parents – and the medical community involved with hypospadias – more conscious of the importance of offering psychological and emotional support at different developmental stages. This should include psychological support for parents, as well as for the young patients, but equally for adolescents and adults during their emotional and sexual development.

5.4.10. Hypospadias as a part of an overall life experience   

One last theme, but no less important, shared by all participants was coming to understand that hypospadias is only a part of their overall  experience. All had learned, in different ways, to extend their consciousness of being emotionally isolated with their experience of hypospadias (in which they were negatively focused on their ‘problem’) so that they finally understood they are part of a wider group of men who have hypospadias. To varying degrees this has enabled them to better accept their condition as being important but still only one part of their overall life experience.

5.5. Implications of the research

Walker’s research has brought out a number of implications. These are aimed both at professionals in the fields of mental health and medicine and at the family members of people with hypospadias (Walker, 1998, pp. 215-223)

5.5.1. Implications for professionals

Many participants expressed their appreciation at receiving, at certain moments in their life, professional support which helped them learn to live with hypospadias as a medical condition. However, it was not easy for them to find such help, partly because of the lack of mental health services specializing in this condition. Even in health centers and hospitals, no service existed to support the psychological problems associated with hypospadias [53]. The author recommended that new studies be carried out, and that both medical and mental health professionals be trained so that hospital services specializing in the surgical correction of hypospadias have the possibility of offering an educational and psychological support service, as well as guidance to patients and their parents, as a central part of the overall treatment for this condition (Walker, 1998, pp. 215-216).

5.5.2. Implications for family members  

The participants constantly described feelings of not having been supported by their family members, and this had an impact on their experience of hypospadias. According to the author, it was vital to be able to create a climate of openness, support and communication in the heart of the family (Walker, 1998, p. 121). In this way, children could feel more free to ask questions and express their anxieties. Parents should be able to educate, guide and listen actively to their child. One of the ways to achieve, according to the author, would be to create a specialized guidance service for parents so that they themselves may explore their own anxieties, hopes and fears. Finally, as well professional support, it would be extremely beneficial for parents to be able to access support groups for men and boys with hypospadias (p.122).

Chapter 3: Psychological Aspects Of Hypospadias (part 1)

Chapter 3: Psychological, psychosocial and psychosexual perspectives (part 1)

  1. Introduction

This chapter presents the principal studies which have been carried out on the psychological, psychosocial and psychosexual impact of hypospadias. Given the paucity of existing literature on the impact of hypospadias and its surgical repair, I have concentrated on three studies:

First, two series of studies using quantitative methods of investigation carried out by Swedish researchers in the early 1980’s and by Dutch researchers in the middle of the 1990’s. Second, a rather more qualitative study carried out by a north American researcher towards the end of the 1990’s.

  1. First series of studies (Sweden, 1980’s)

2.1. Aspects studied 

Svensson and his colleagues (Svensson, R. Berg and G. Berg, 1981) studied the psychological, psychosocial and psychosexual impact of hypospadias surgery on patients. Various aspects of these studies have been reported in different publications, but all used the same sample of subjects. The method of investigation consisted of semi-structured interviews and psychological testing, as described below. The results of the interviews and various tests were statistically analyzed.

2.2. Sample studied

Svensson et al. (1981) had access to a sample of 34 adult men aged between 21 and 34 years drawn from a population of patients treated for hypospadias (urethroplasties) during their childhood in the 1950’s and 1960’s [42], in a pediatric surgery service in the Stockholm region (Sweden).

In order to establish comparisons, a control group was composed of 36 men aged between 20 and 34 who had not had this type of surgery, but who had been operated on for appendicitis at around the same age.

2.3. Principal results

2.3.1. Delay in psychosexual development

One of the first aspects studied was related to psychosexual development (R. Berg, Svensson and Åström, 1981). When compared to the control group, the results of the interviews with men who had been operated on for hypospadias showed that their first experiences of a sexual nature (e.g., first flirtations, first sexual relations) happened at a later age and that generally they had a significantly reduced number of sexual partners.  However, in spite of these differences, the majority of the men interviewed reported having a relatively satisfying sex life (Berg et al., 1981).

2.3.2. Psychological and interpersonal disturbances

The second aspect studied concerned the psychological implications of hypospadias repair and its repercussions on mental health (G. Berg & R. Berg, 1983a ; R. Berg, G. Berg and Svensson, 1982). Using two psychiatric interviews and a personality test [43], the researchers established that the men who had had hypospadias operations considered themselves to have been more timid and isolated during childhood.

During adulthood, they reported more symptoms of depression and anxiety, and encountered more difficulties in establishing interpersonal relationships.  Finally, a tendency towards low self-esteem was observed in these subjects.

2.3.3. Doubts relating to masculinity

A third area which the research focused on was the concept of gender identity and sexual orientation (R. Berg & G. Berg, 1983b). According to the authors, who used psychological testing to measure these dimensions of psychosexual development [44], the adults who had been operated on during childhood seemed more uncertain regarding their masculinity.

This study, which also aimed to produce data on how the group behaved with regard to typical masculine and feminine roles, found evidence that the group had a higher propensity to adopt more feminine gender role behavior. However, according to Berg & Berg (1983), little difference was observed between the sexual orientation adopted by the target group and the control group, with most reporting a heterosexual choice of partner.

2.4. Implications of the data

The results of these studies clearly indicate that some differences exist between the psychological, psychosexual and psychosocial development of men operated on for hypospadias and men who have not received this type of surgery. These discoveries led the authors to propose several possible explanations.

Their first hypothesis was that there could be a link between the level of hormones in the hypospadias patients and the psychological traits they displayed. However, another study (R. Berg, G. Berg, Edman & Svensson, 1983c), demonstrated no significant relationship between the hormonal profiles and psychological characteristics such as personality traits. These results undermined the endocrinal hypothesis proposed by the researchers.

A second explanation, of a more psychoanalytic flavor, supposed that genital surgery, practiced at a psychologically vulnerable age (during the oedipal phase) could lead to an exaggerated castration anxiety and disturbances of a neurotic type (Berg & Berg, 1983a).

A third explanation, more psychosocial in nature, is based on the importance of the penis-phallus, at least in western culture: ‘symbolically, the penis represents activity, self-affirmation, social success, strength, masculinity, etc’ (Berg et al., 1982, p. 411).

Given the symbolic significance of the penis, it could be that a sense of deficiency surrounding this organ has led to fears of incapacity or incompetence, in the patients and their parents, which extend beyond the purely physical function (e.g. urination or sexual function) and into the domain of psychological function, social relations and sexual behavior.

Moreover, the development of the observed psychological characteristics, low self-esteem in particular, could have been induced by the reaction of their peers regarding their deficiency (e.g., mockery, jokes) (Berg & Berg, 1983a, 1983b).

The authors referred to the importance of some kind of professional survey or follow-up for both children having surgery and their parents in order to understand the nature of their responses to both hypospadias and the experience of genital surgery.

Such a survey could help in the development of psychotherapeutic assistance specially adapted to the needs of this group of people (Berg & Berg, 1983a, 1983b ; Berg et al., 1982).

  1. Second series of studies(Netherlands, 1990s)

3.1. Aspects studied  

The second series of studies published, this time carried out by a team of Dutch researchers, dates back to the middle of the 1990’s. These studies aimed to collect information on the genital perception  (Mureau, Slijper, Slob & Verhulst, 1995c), psychosexual development (Mureau, Slijper, Nijman et al., 1995a ; Mureau, Slijper, van der Meulen et al., 1995b) and psychosocial development (Mureau, Slijper, Slob & Verhulst, 1997) of patients operated on for hypospadias at different ages. Again, this study was designed to compare data from subjects operated on for hypospadias with data from a non-hypospadic control population 

3.2. Samples studied

The samples used by this research team came from a population of patients treated for hypospadias during childhood, in two medico-surgical departments attached to hospitals located in the Rotterdam region. One department specialized in plastic and reconstructive surgery; the other in pediatric urology.

The patients treated in plastic/reconstructive surgery (between1960 and 1990) and those treated in pediatric urology (between 1980 and 1992) received surgical repairs (urethroplasty) giving different aesthetic results after the operations: technically speaking, the repairs were either ‘ventral’ (bringing the urethral meatus to the level of the coronal ridge) or ‘terminal’ (excavating a canal within the glans, bringing the urethral meatus to the tip).

Two samples were organized, according to age. The first sample comprised 73 adults aged 18 to 38 years who had all received ventral repairs. The second comprised 116 children and adolescents aged between 9 and 18 who, depending on the department to which they were admitted, had ventral or terminal repairs.

The researchers formed two other control groups, composed of children and adolescents (88 in number) and adults (50 in number), who had not experienced surgery on the external genital organs, but who had been hospitalized during childhood, in the same hospital, for an inguinal hernia.

3.3. Principal results

3.3.1. Different and more negative genital perception

The first study reviewed here was carried out on ‘genital perception’ (Mureau et al., 1995c). In this study, researchers wanted to know to what extent, following surgical treatment, the subjects with hypospadias continued to perceive differences between the appearance of their penis and that of others.

According to the authors, several factors play a role in the development of a different genital perception (Mureau et al., 1995c, pp. 290-291). The first factor is that the perception of feeling and touch in the penis is perceptibly changed after the operation.

Before surgery, many boys with hypospadias are not easily able to direct their stream of urine, often forcing them to sit down to urinate.  After surgery, they are able to urinate standing up and are better able to direct the stream. Similarly, the sensation produced by a curved, erect, pre-operative penis may differ from that after the operation, when the erection is straight.

A second factor is the level of a child’s awareness of his penile abnormality. Very young children are not usually conscious of having a congenital variation of the penis and urethra. It is only as they grow up and their cognitive functions develop that they become conscious that their penis looks different to other people’s (e.g. in comparison with their father, their brother(s) or their peers).

Also, children may perceive differences in their genital appearance because, despite technical progress, hypospadias surgery never gives the penis a perfectly normal appearance (e.g., the penis appears to be circumcised).

A third factor relates to the attitudes of the people around the child. As shown in previous studies (Robertson & Walker, 1975), the parents of children with hypospadias may be anxious about the future masculinity of their children (e.g., his fertility or sexual potency).

There is a risk of these parental anxieties being transmitted to the child and this may affect the child’s capacity to accept his bodily difference.  The responses of peers can also, in certain cases, increase a child’s awareness of being different (e.g. if he is unable to urinate standing up or project his stream a certain distance), which may lead to him devaluing his penis and avoiding situations where his difference may be discovered (e.g., urinating in groups or publicly).

A fourth factor concerns unrealistic expectations regarding the aesthetic outcome of the operation, from the parent’s point of view as well as the child’s. Boys who have been told that their penis will be ‘normal’ after the surgery expect to have a penis which looks similar to that of other boys. But if their expectations are not fully realized they may feel disappointment and become fixated on the appearance of their penis.

Specific questionnaires measuring ‘genital perception’  [45] were completed by the experimental subjects in two different versions: one for adults and one for children and adolescents.  Statistical analysis of the replies to these questionnaires (Mureau et al. 1995c pp. 293-295) produced some significant information.

The first observation concerns  the perception of difference in the appearance of the penis, in comparison with others.  78% of children and adolescents, and 84% of adults, operated on for hypospadias (as against 13% and 40% respectively in the control groups) were conscious of having a penis which differed in appearance from that of other people.  One of the most commonly reported issues was the post-operative circumcised appearance of the penis (the authors noted that circumcision is an uncommon practice in the Netherlands).

A second observation related to the degree of satisfaction with the appearance of the post-operative penis.  Almost 25% of the subjects operated on for hypospadias (against 5% of the children/adolescents and 12% of the adults in the control group) were dissatisfied with the appearance of their penis. Their lack of satisfaction was related to the size and shape of their penis and the position of the urethral meatus. The authors concluded that these subjects had a ‘more negative genital perception’ (ibid, p. 295). In addition, a desire for both functional and aesthetic improvement was expressed by almost 40% of children/adolescents and 37% of adults who underwent urethroplasties.

A third observation concerned comments from other people.  Almost 41% of children/adolescents and 33% of adults operated on for hypospadias reported having received comments on the appearance of their penis, in public, in places where it was necessary to undress in front of others (e.g., in the locker room while changing for sports, or in public toilets).

3.3.2. Psychosexual inhibitions

The investigation of psychosexual development in patients who had undergone operations for hypospadias consisted of semi-structured interviews based on prepared questionnaires.  Some of these questions related to the physical and psychological aspects of sexuality; others to the functional and aesthetic results of surgery. Some of the principal results from these two studies (see Mureau et al., 1995a, pp. 1352-1354, and 1995b, pp. 1903-1905) are presented below.

One common observation was that post-operative differences in genital appearance could result in people operated on for hypospadias experiencing ‘inhibitions’ in certain circumstances.

Almost 40% of children/adolescents and 33% of adults in the target groups (against 2% and 3% in the control groups) reported expecting to feel inhibited or having been inhibited in the search for intimate contact, both non-genital (e.g. in flirtations) and genital (sexual relationships).  One of the reasons often given for these inhibitions was a fear of appearing ridiculous in front of their partner, if he or she ever discovered the difference in their genital appearance.

Embarrassment, combined with a more negative genital perception, can extend to other situations and cause men to try and conceal their genitals. For example, the researchers discovered that people operated on for hypospadias hid their genitals in situations where it is conventional to be exposed (e.g., in public showers or public toilets).

According to these authors, even though the hypospadias-operated men showed certain differences when compared to the control group, such as a more negative genital perception, difficulties in establishing sexually-related contacts, and more frequent concealment of their penis in front of others [46], their sexual adjustment (e.g., the age of first sexual feelings, contacts or first sexual relations) and their sexual behavior (e.g., number of partners or frequency of sexual activity or masturbation) were considered ‘similar’ (Mureau et al., 1995a, p. 1354, and 1995b, p. 1905).

Only a few differences were observed in sexual function, including problems caused by chordee, a too-short penis, and pain during erection/orgasms.  In summary, therefore, the psychosexual development of subjects operated on for hypospadias has been evaluated as relatively ‘normal’ (Mureau et al., 1995a, 1995b, 1995c).

3.3.3. Lack of guidance and communication

At the end of the research Mureau et al. (1995a) allowed the adult subjects who had been operated on for hypospadias to express their thoughts and to ask questions. This qualitative data throws some light on the difficulties faced by this group of men.

The first difficulty was their lack of information. Many adult men asked basic questions about  hypospadias, mostly about its frequency, how it occurs and its impact on fertility.

They wanted to be informed about the precise nature of their condition. A major complaint was related to the lack of guidance and explanations received during treatment; some patients did not even understand exactly why they were being operated upon.

The second problem was the lack of communication surrounding hypospadias and the experience of surgery. According to Mureau et al. (1995a), for some men it was taking part in this research that had, for the first time, allowed them to confront and explore their hypospadias, their surgery and how it had affected their sex life.

A similar level of secrecy was clear among the children and adolescents (Mureau et al., 1995b). More than one third of them (33%) had never told anyone they had had an operation on their penis, for fear of being ridiculed.

3.3.4. Psychosocial development

The third aspect studied by the Dutch team was related to ‘psychosocial development’. According to the authors (Mureau et al., 1997, p. 372), surgical repair for hypospadias was accompanied by a series of stressful events (e.g., repeated hospitalization, parental anxieties, the experience of surgery on the genitals, consciousness of having genitals different from the norm). Thus patients operated upon would be ‘at risk’ of developing subsequent psychosocial problems.

With the aim of verifying whether people operated upon for hypospadias encountered further problems in their psychosocial development, the researchers used several standardized questionnaires which were also used with the control groups. One questionnaire related to the genital perception of the subjects (already recounted); the other questionnaires were based on certain principal variables such as:

–   social inadequacy and self-confidence [47];

–   social anxiety and social competence [48];

–   the presence of emotional and behavioral problems [49].

The results showed no significant difference in the variables investigated. Only a few significant correlations were found between the genital perception of the subjects and their psychosocial development.

These seemed to indicate that  ‘the genital perception of the subjects operated on for hypospadias was negative, their psychosocial functioning was better’ (p. 384). While generally the results of this study indicated that patients operated upon for hypospadias did not have a poorer psychosocial development than the control subjects, some results showed that patients who were more dissatisfied with the appearance of their penis ran a greater risk of developing psychosocial problems later on.

3.3.5. Implications of the data

In their discussions (Mureau et al., 1995a, 1995b), the researchers emphasized the importance of being able to follow-up patients treated for hypospadias during childhood into adulthood as standard medical practice. Patients seem little inclined on their own initiative to seek out medical advice, even if they encounter considerable physical or psychological difficulty.

Moreover, Mureau et al. (1995c, pp. 295-297) stressed the usefulness of offering professional psychological assistance and/or sexual therapy to patients who had difficulty, after the operation, in accepting the appearance of their penis, especially its size and circumcised appearance.

According to the authors, it is important to clearly inform parents and patients that: (i) after surgery the penis will have a circumcised appearance due to the absence of a foreskin, and the glans being permanently exposed;  and (ii) that a penis ‘circumcised’ through hypospadias surgery looks very similar to a penis circumcised for religious or cultural reasons.

It is also important to tell patients who are worried about the small size of their penis that surgical operations for hypospadias do not aim to increase the size of the penis, and it is important to reassure them that it is possible to have a satisfactory sex life with a small penis [50].

Some psychological support would equally be necessary for more vulnerable patients, for whom the appearance of their penis could be a risk factor in developing psychosocial problems later on (Mureau et al., 1997).