Many men with hypospadias report that they were never able to discuss the condition – or how it affected them – with a doctor or their parents. And a lot of them feel they would have avoided some of their negative feelings about their penis and themselves as they grew up if their parents had taken the time to discuss this issue with them when they were boys.
Many parents who have a boy with hypospadias find it difficult to talk to the child about it: to a father, it may seem like he has failed his son in some way, or he and the boy’s mother may just be too embarrassed to discuss the condition with their son. Certainly, part of the problem is the way the condition is diagnosed: most parents first hear the word “hypospadias” immediately after their son’s birth, when doctors announce there’s a problem which needs further examination. At that time they are very unlikely to have any idea of what hypospadias means and what they might be expected to do about it.
The first step for parents of a new-born son with hypospadias is to obtain more knowledge about the condition Information about hypospadias, what it looks like, how often it occurs in the population, and its possible effects on urinary and sexual function will provide a basic understanding. This can help the parents to accept their son’s hypospadias more easily. In the past, it has not been easy to find information related to hypospadias except in medical writings. The fact that this pamphlet is the first publication of its kind shows what a problem this has been.
A second step is to meet others whose sons have been affected by hypospadias, and to exchange experiences. Although hypospadias is relatively frequent, people do not find it an easy subject to discuss. Consequently, parents can feel very much alone and isolated. In this case, the internet can be a real source of help and support. Today, there is a series of groups and forums dedicated to parents who have a child with hypospadias (see links at the end). Being connected with other parents can be helpful in making better informed decisions, and since hypospadias often does not require surgery, parents can learn about the experience of parents who have chosen not to have surgery for their sons.
And it’s undoubtedly helpful for parents to meet or talk to adult men who have hypospadias, whether or not they’ve had surgery, and to hear their stories. This can help parents understand the physical and emotional effects of hypospadias, as well as showing them how men respond to hypospadias and adapt to living with it.
Perhaps more importantly, it also helps parents prepare for the questions which their son may ask about his hypospadias at different stages of his physical and emotional development. If parents are knowledgeable about hypospadias and the possible consequences for their son’s physical and emotional well-being, and they are able to talk this through with him, there’s a much better chance that he will be able to understand why he is “different”.
This sort of discussion helps a boy to understand more clearly what he might expect as a male with hypospadias and, therefore, manage his own life in the most positive manner.