The lived experience of men with erectile dysfunction was reflected in the themes of loss and being alone with it.

Main findings 2 main themes, loss and being alone with it, emerged. These 2 themes were connected via the meta-categories making sense of it, telling other people, and place of sex in the relationship. The theme of loss was related to a sense of manhood: “How can I be a man if I can’t maintain or have erections?” Men referred to a hierarchy of signs that confer manhood (with erections at the top, followed by penile sensation, desire for sex, and ejaculations), and gauged the seriousness of their ED by comparing it with this hierarchy. They generally believed there was a lack of public acknowledgement about how common ED was, which they attributed to the pressure put on men by men to define their manhood in terms of sexual activity (eg, bragging). The sense of loss was also indicated by the process of making sense of it. Men talked about knowing and not knowing what caused their ED, postulating reasons including physical “malfunctions” and psychological problems (eg, work pressure). Men seemed uncertain whether their ED was permanent or temporary, in part, because of the gradual onset of symptoms. They were also unsure about what was normal for their age. Men > 60 years of age said that they did not discuss sex openly with their partners because they were embarrassed, and their partners also felt embarrassed or at fault. Men < 60 years of age, however, talked about their partners’ acceptance of their ED and of still being in love. They discussed their ED and how to manage it with their partners. Men’s uncertainty was also indicated in the process of finding a solution. Most were looking for a “cure” but did not expect to find one. A solution was seen as an intervention to produce and maintain erections. Men anticipated physical rather than psychological interventions (eg, counselling or hypnosis), which were primarily seen as supplements to physical interventions. The place of sex in the relationship varied. Some saw sex as an indicator of their love for their partners and worried that their partners might think they didn’t love them anymore; others saw it as an added bonus to their love. Most men spoke of having sexual desires for their partners. They were concerned about meeting their partner’s sexual needs, and talked about women wanting and preferring penetration. The second theme, being alone with it, reflected the difficulties of telling others about their ED. In terms of telling other people, most men had only discussed their ED with their GP or a hospital physician. Disclosure of ED to health professionals (men or women) was not a problem for many men, who saw professionalism as a means of ensuring a sympathetic and confidential hearing. Some older men, however, had difficulties disclosing to either male or female health professionals. In some instances, the problem was identified when they consulted with their GP on another health matter.