Erectile Dysfunction: “A Defining Moment in Life”
Loss of erectile functioning during the last 4 weeks was reported by 72 % of survey respondents, with 40 % of this group reporting that they could not achieve an erection and 32 % reporting only a partial erection; 18.7 % of the total sample reported that they could achieve an erection whenever they wanted; and 27 % reported an erection firm enough for anal intercourse (EPIC). Even when anal penetration was possible, the physiology of the rectum was reported to affect functioning, as Zachery (55, gay, partner) commented “with fucking he finds that my sphincter kind of deflates his erection.” Erectile functioning was also reported to affect masturbation, with Gareth (65, gay) saying that “it would be like playing with a piece of jelly” and Henry (59, gay) saying “it’s a really, really big effort to try and get the thing up, rubbing it…it’s just soft in your hand.” In open-ended survey responses and interviews, men described the emotional impact of these erectile changes, the impact on gay identity and masculinity, as well as the impact on sexual relationships, outlined below.
Emotional Impact of Erectile Changes: “You’re Not the Full Value” or Acceptance of Change
The majority of men (81 %) who reported loss or change in erectile functioning over the last 4 weeks rated it as a problem (EPIC). For 19 %, it was rated as a small or very small problem; for 61 %, it was rated as a moderate or big problem (EPIC), which had a “great emotional impact” and was experienced as “depressing,” “very difficult,” “an enormous loss,” or a cause of “great sadness.” For example, David (64, gay) said “I feel devastated; the erection functioning is a really emotional thing for me,” and Jonny (54, bisexual) said that “it’s quite a big thing for a man, especially for a younger man, at 49, not being able to have erections.” Many older participants said that as gay or bisexual men they expected to continue to have an active sexual life well into later life, with Sam (74, gay) commenting that “gay men tend to engage in sex for a longer period,” differentiating himself from heterosexual men in his age group, of whom he said “none of these men would be sexually active.” This expectation of continued sexual activity provides some explanation for the near uniformity in accounts of distress following erectile difficulties in older participants, for example: “it’s probably the most horrific thing that I’ve ever been through psychologically” (Finn, 69, gay); “it’s depressing. I feel like I’m sort of, pretty useless, because you’re not complete. You’re not the full value or something” (Clive, 70, gay).
Clive was not alone in experiencing a depleted sense of self following erectile loss; other men described themselves as “not feeling whole,” or feeling “cheated” of a core aspect of their masculinity. For example, Graham (74, gay) said “I am not the man I was, never will be,” and Finn (69, gay) told us “I’m no longer a man. I’ve got a cock that doesn’t work anymore.” The magnitude of this sense of loss is illustrated by Scott (59, gay), who said that “if I had the choice again, I would take my risks with the cancer, and not have the operation,” describing the loss of erections after robotic prostatectomy as “a defining moment in my life…the impact on my life as a gay male has been really profound, and in a negative sense.”
Long-term negative emotional reactions to ED were not inevitable, however. A number of men gave accounts of reconciling themselves to changes in sexual functioning, and developing fulfillment through other activities: “in life if my sexual function diminishes further, there are other aspects of life that will take over from that which will continue to make life satisfying and rewarding” (Alex, 69, gay); “I have developed more close and intimate relationships with men that don’t include sex” (Damon, 52, gay). Many men described engagement in creative pursuits, such as art, pottery, or music. These accounts demonstrate that for some men initial negative responses to ED can be replaced by acceptance and absorption in other pursuits.
Impact on Gay Identities: “Retired From the Gay Human Race” or Identity Re-evaluation
While erectile dysfunction (ED) is widely recognized to have a potential impact on masculine identities, it is the impact on gay identities that is identified in Scott’s account of changes to his life as a “gay male,” above. Many of the participants in this study emphasized the importance of sexual activity to their identity as a gay man, an identity that was threatened by ED. This is illustrated in the accounts below:
I think gay men are a lot more sexually aware, or I think part of our identity is that it’s about sex and our ability to function sexually, and I think we take a harder hit when it [ED] happens. (Rick, 59, gay)
I’m still a gay man but what that meant was, was suddenly quite different. Somehow being sexually active had always been a fundamental part of that identity, and that was then changed. And I suppose making sense of that was quite hard…my personal identity certainly went into a crisis. (Mark, 45, gay)
As a result of this “crisis” in identity, some men said that they did not “feel so good about being gay anymore” (Benjamin, 63, gay), felt “outside the sexual community” (Jason, 49, gay), or felt as if they had been “forcibly retired from the gay human race” (Scott, 59, gay). For men who had identified as gay in later life a double blow was reported—loss of sexual functioning and loss of further opportunity to explore recently discovered gay sex. For example, Clive told us that he had come out as gay when he was 50, and was diagnosed with advanced PCa 4 years later. He said that the “thrilling and scary” sexual exploration he had been engaged in “all sort of crashed before I’d even got there…the whole thing had gone before it even started,” and he felt “robbed of any opportunity [he] might have had.”
For many participants ED signified aging, with Mark (45, gay) saying, “I went from being a young gay man to feeling old” and Jack (59, gay) saying that “prostate cancer has made me feel older than I need to at this stage.” Being perceived as “old” was described as having a particular negative meaning for gay men. For example, Colin (68, gay) said that “it takes a certain amount of self-confidence and self-awareness and being comfortable with yourself, to be able to age and grow older within the gay community” and Alan (67, gay, partner) commented that “as an old gay man you’re not particularly marketable.” However, gay men who maintain sexual functioning may be able to resist being positioned as old. For example, Nick (age 66, bisexual) described himself as “really lucky” because he was “a very fit guy” with “a really nice body,” and could “fuck for 2 or 3 h or as long as a bottom [receptive partner] can take it,” as a result of penile injections. This made him feel “young” and attractive with “a lot of the younger guys attracted to me.”
In contrast, a number of men gave accounts of ED following PCa having no impact on their identity as gay men. For example, Alex (69, gay) said: “my worth of self, my functioning as a gay man, no, I don’t think it’s particularly impacted” and Euan said there was “no real change,” other than giving up his sexual position as a “top” or insertive partner in anal intercourse, which he felt he “had to make the best of.” Others suggested that they had re-evaluated their previous association of sexuality and gay identity, as evidenced by William’s account: “I suppose, as a gay person you identify yourself through your sexuality, which, you know, from where I’m sitting now, looks a bit silly” (67, gay). Finally, a number of men talked about their identity going through a transition following PCa, resulting in changes in how they operationalized their lives as gay men:
I had gone through my journey as a gay man of being sexual and being attractive and just having physical fun with other men, and it was like I’d come out the other side of that and that was gone, and it felt like, “well, you know, I’m still a gay man” but what that meant was, was suddenly quite different (Mark, 45, gay).
A number of men attributed their ED to aging, rather than PCa, or accepted ED because of their age. For example, Cameron (56, bisexual) said that “something has changed, and I choose to see that as a change in my age, more than a change due to the prostate cancer.” William (67, gay) described a friend who was the same age as himself who had ED and said “if I hadn’t had cancer, I probably would’ve been in the same position I am now anyway.” These accounts suggest that PCa related sexual dysfunction does not inevitably place men outside of the gay community and take away their sense of gay identity; it depends on whether individual men position erectile functioning as central to being a gay man, or an older man.
Relational Impact of Erectile Dysfunction: Threat of Sexual Disqualification or Sexual Renegotiation
ED was described by many participants as resulting in feeling “sexually inferior,” or “a eunuch,” leading to a sense of “disqualification in the sexual experience.” This demonstrates that ED can significantly influence GB men’s sexual and social interactions, with the consequences of dysfunction played out in a relational context. Many men gave accounts of avoiding sexual encounters with new or casual partners because of this, as Grant (72, gay) said “I don’t even like to think of trying to interest a new prospective partner in sex with me because of my limited ability to perform.” Mason (68, gay) said that he was “desperate” to be in a relationship but would not feel “worthy” and he was “worried that will affect my ability to find a partner.”
For men who took an insertive role in anal intercourse, the inability to achieve or maintain an erection had the potential to influence their sexual engagement with others significantly, often leading to the use of medical aids, or sexual “reinvention.” For example, Finn (69, gay) said “It was like someone taking away all your toys. Where you could just rock up with a guy and do whatever you like with him, and no longer could you do that…. I had to reinvent myself and that was very difficult.” Finn’s reinvention involved developing “an ability to perfect foreplay.” For some, the consequence was cessation of sex. For example, Scott (59, gay) described himself as having been “fortunate to have a bit of a following” where regular partners knew what they could expect “in terms of satisfaction”:
When I had the prostatectomy, five years ago now that’s completely changed and since then I’ve become a basically inactive gay male without the sex part unless it’s assisted through injections, which I really dislike because I don’t think any guy likes sticking needles into their dick.
This account demonstrates the social nature of erectile functioning, where the “following” Scott previously had as a “normally active gay male” who could guarantee sexual satisfaction to his partners has now gone. This resulted in social and sexual isolation.
For men who took a receptive role in anal intercourse, absence of erection could also be problematic, as Mark (45, gay) explained: “partners would comment, ‘Aren’t you turned on, aren’t you into this, don’t you want to do this?’.” Mark’s account illustrates the fact that erections have significance within gay men’s sexual encounters beyond the act of anal penetration. As Aaron (59, gay) commented, “erections are important, but they’re important visually,” with an erect penis signifying desire and pleasure: “it’s a very, very flattering thing, when somebody gets an erection in your company” (Graham, 74, gay). In ongoing relationships, participants found ways of communicating desire and pleasure through touch or talk. However, this was described as more difficult in the context of casual sex, where “if you’re not putting out all signs that you might be interested then people get the wrong message” (Euan, 67, gay), and “if you can’t get an erection at the sauna guys tend to turn away” (Cameron, 65, bisexual).
The consequence of ED for many participants was a sense of sexual incompetence in comparison with other gay men, particularly in the context of casual relationships. As Andy (61, gay) commented, “as a gay man and interacting with other gay men, yeah….I’d feel a little bit worthless.” David (64, gay) said that he tended “to withdraw somewhat when there is light-hearted banter between guys about their (sexual) experiences…because I can’t experience that anymore,” feeling “inadequate” as a result. Envy of other gay men who were not experiencing ED was also common. As Clive (70, gay) said “you look at other guys who are your age, but still active, and you think, ‘What about me? It isn’t fair. I’ve paid my money, I want my share’.”
At the same time, some participants reported an impact of ED within long-term relationships. For example, William (67, gay) said that his partner kept asking him “when are we going to have sex?,” and then started a relationship with another man when William could not perform, which made him feel like a “cuckold.” Zachary (59, gay, partner) described a deep sense of loss and sadness following his partner’s erectile changes, which impacted on their shared intimacy and pleasure:
Yes, there is an under-lying sadness that rides tandem to the joy of our coupling. We have fallen so far away from where we were. The intimacy we had worked at so hard was paying off big time as our love-making was so focused on each other—and then this. Now the impetuosity is gone, so too the erection at my back while sleeping, the kick from putting my hand on his cock and feeling a response, all changed by pills and timing. The intimacy has changed, now more focused on nurturing my partner’s emotional needs.
Zachary stands as an example of the many long-term partners who were described as “supportive and sympathetic,” “loving,” and “understanding,” resulting in a “feeling of security,” or “greater closeness in the relationship.” This closeness was sometimes associated with renegotiation of sexual activity in the face of ED, focusing on non-penetrative sex, such as oral sex, cuddling and stroking, use of sex toys, and frotting (rubbing genitals together). Many men described greater “intensity” in sexual connection with their partner as a result, as Terry (53, gay, partner) describes:
If you’d said to me prior to the operation that you would have felt the intensity of love and lovemaking that you felt in the first year, you know, new love and all that sort of stuff, I would have said you are bonkers, but that’s exactly what’s happened to us.
Other participants talked of enjoying “gentler and slower, more intimate, sort of, process” of “sexual play,” compared with the “aggressiveness” pre-cancer sex (Bruce, 61, gay). Medical aids were also described as allowing sex to continue post PCa, as Matt (56, gay, partner) said: “he’s woken up beforehand and got the injection ready and woken me up and away we go.” A minority of men talked of including an additional partner into a long-term relationship, or encouraging their partners to “play out” with other men, with positive benefits in terms of support and vicarious sexual pleasure. As Bruce (61, gay) said of his partner:
I recognize that he’s got physical needs and I don’t have a problem with that. And he comes home to me all the time, and in fact, shares part of his fantasy life with me anyway.
These accounts demonstrate the importance of relational context in sexual renegotiation, and potential differences between the impact of sexual changes in casual and long-term relationships.
Anal Sensitivity and Changed Sexual Roles: “It’s a Very Sensitive Part of a Man’s Body”
Prior to PCa, 31 % of survey participants reported being insertive partners in anal intercourse (“tops”); 19 % were receptive partners (“bottoms”); 20 % enjoyed both (“versatile”); and 31 % did not engage in anal intercourse (survey items developed for this study). After cancer, 12 % of respondents described themselves as tops, 24 % as bottoms, 8 % as versatile, and 56 % had no anal intercourse at all. However, transitioning from being a top or versatile to a bottom was not an inevitable solution to erectile difficulty, as discomfort or pain during anal sex was reported by many men, as Sam (74, gay) described, in response to the suggestion from his psychologist that he could “change roles”: “No, I couldn’t. Because of my bowel problem and the radiation burn, I don’t think it’d be possible for me to do that.” Bruce (age 61, gay) described himself as having become “versatile,” but said that “in my recovery stage I had to be very careful about being a receptive partner because I found that could be quite painful.”
PCa treatment and removal of the prostate can also result in changes to anal sensitivity which can impact upon the sexual pleasure and satisfaction of men who were receptive partners before treatment. This is evident in the following accounts: “it’s a very sensitive part of a man’s body, and it is a great part of the enjoyment of anal sex…and so without them [prostate] a great deal of the enjoyment disappears” (Jack, 59, gay); “in terms of penetrative sex, when I’m the receiver, the pleasure that I had for that has basically gone” (Rick, 59). This suggests that some men may cease being receptive after treatment, due to lack of pleasure. Conversely, for a minority of men, anal sensitivity was described as having increased following PCa treatment, with Bruce (61, gay) suggesting that the “intense sexual gratification” provided by the prostate had masked other areas of sensitivity that he had “not necessarily realized or engaged” meaning “the simple act of being on the receptive end of sex is somehow more satisfying than it used to be.”
A number of men were reluctant to become the receptive partner because of what it meant to them in terms of sexual role, not wanting to take up what can be regarded by some men as a submissive position, or not finding it a pleasurable experience: “it doesn’t appeal to me at all” (Damon, 52, gay); “it was like an unevenness in the sexual relationship. The sex became more about the other person and their enjoyment of it and it was something I was almost doing just for them” (Mark, 45, gay). Having a regular partner who was normally a bottom, and difficulty in finding the right top, was also reported: “I’ll have to be the bottom but if your partner is a bottom as well, it’s not necessarily going to work” (Andy, 61, gay).
Loss of Sexual Pleasure and Libido: “It’s a Profound Change in Identity”
When asked to rate their sexual desire in the last 4 weeks, 58 % of survey respondents rated it as absent, very poor, or fair, with level of sexual desire described as a problem by 65 % (EPIC). In the interviews, a number of men described sexual desire as “just not there” (Tony, 74, gay); or as having “no sexual drive or inclination whatsoever, like it’s been turned off, it’s really strange” (William, 67, gay). The absence of desire was reported to have a profound effect on identity. Andy (61, gay) described it as having “gone from being virile to not being virile” which felt as if “you’ve had a lot taken away from you.” Gordon (56, bisexual) expressed anger and frustration at the absence of libido and at attempts to resuscitate such feelings through medical aids:
It’s almost impossible to describe to someone who’s past the age of puberty what it’s like to feel no sexuality at all. It’s a profound change in identity and I can’t say that any more clearly and deeply and effectively. It really makes a huge difference. So when the question such as, “Well after you lost all libido did you try any of these aids?” It’s sort of like you’re asking a double amputee, “So did you try—?” “No, dear, I don’t have fingernails” [laughs]. It—that makes no sense.
The consequence of absence of desire, for some men, was sexual abstinence: “I don’t have sex”; “I can’t be bothered pursuing the idea.” For others, sex was enacted without desire, as a way of attempting to maintain sexual functioning:
My excursions out to [gay sex] venues these days are less to do with feeling horny and sexual, but more to do with…pumping a little bit of oxygen into my dick, just so that I won’t seize up altogether….There’s no love or sexuality involved in it anymore (Scott, 59, gay).
Scott did not report any pleasure in his sexual encounters, positioning them as “exercise.” He was not alone. Fifty percent of survey respondents reported experiencing little or no enjoyment during sex, compared with only four per cent of men rating sex as lacking enjoyment before cancer (CSFQ). Absence of pleasure during orgasm was the most commonly reported experience, with the ability to climax described as “frustrating” or “needing a lot of work.” Absence of ejaculation during orgasm was also reported to result in loss of pleasure, as well as changing the meaning of sexual encounters because of the absence of semen, outlined below.
Non-Ejaculatory Orgasms: Loss of “An Essential Part of Sexual Enjoyment to Both Partners”
Seventy-one percent of survey participants reported complete loss of ejaculation at orgasm following PCa treatment, with an additional 13 % of men reporting that they ejaculated “rarely” or “sometimes” (CSFQ). Fifty-two percent of survey participants reported being “somewhat” (21 %) or “very” (31 %) concerned about their ability to ejaculate (CSFQ). Many men gave accounts of loss of sensation and pleasure as a result of ejaculatory loss: “climax doesn’t feel complete without the feeling of ejaculation”; “I don’t ejaculate any more. I never will. I miss it a great deal.” For some men, the magnitude of this loss was unforeseen: “lack of semen has affected me much more than I expected…it’s more difficult to talk about than erection issues” (Greg, 53, gay).
The absence of semen in sexual encounters, and the potential effect on partners, was reported to be a major concern. Ejaculation of semen stands as visible evidence of sexual satisfaction and excitement, as Clive (70, gay) commented, “ejaculation is an essential part of sexual enjoyment to both partners.” The socially validated nature of external semen exchange was emphasized in Henry’s description of a safe-sex publicity campaign “20, 30 years ago in the gay community in this country about ‘cum on him, not in him’,” which was aimed at encouraging men to avoid ejaculation in a partner in either anal or oral sex. Henry (59, gay) described the loss of this eroticized practice following PCa as a matter of “significance.” Absence of ejaculate was also associated with partner disappointment, as evidenced in the following accounts: “happy not to clean up. Not happy with partner’s disappointment” (Michael, 69, gay); “I miss the sensation of ejaculating and I think it disappoints my male partner” (Boris, 68, bisexual). Other men were concerned about disappointing future partners if they could not provide the “gift” of semen: “Semen is important to some prospective partners, this has restricted the number of potential partners” (Greg, 53, gay); “I miss the sensation of pumping ejaculate. I am also concerned that some guys really enjoy swallowing a load or being ejaculated on and will be disappointed when I cannot provide that” (Arnold, 57, gay). These concerns were borne out in the accounts of a number of partners we interviewed, who described missing the visible evidence of pleasure signified by ejaculation. This is illustrated in Anton’s account:
when you ejaculate you watch someone’s face and you hear the noises they make, you know that they are effectively engaged in that process and enjoying it to a degree, whereas when that’s not present it makes it a little bit more unknown (Anton, 54, gay, partner).
The consequence was that many men worried that they would be judged as a failure as a result of ejaculatory absence: “my fear is that they think less of me. Ah, in the fact that I can no longer ejaculate” (Lucian, age 51, gay); “I worry in my mind that I’m judged that I haven’t been enjoying the other person” (Mason, 68, gay). This resulted in avoidance of casual sex, where the absence of semen, often combined with erectile difficulties, would have to be explained: “it would be too hard to kind of disclose or to pick up somebody and say, ‘well, nothing is going to happen on my part, you know…. I can’t cum’” (Andy, 61, gay). The solution for some men was to take on the role of “top,” as “the lack of ejaculate is of little concern when you cannot see this not occurring” (Jack, 59, gay), but this requires confidence in still having the capacity for a firm erection. Other men reported achieving vicarious pleasure through a partner’s ejaculation: “I’m still enjoying giving my male partner oral sex because I get to enjoy his ejaculations vicariously” (Boris, 68, bisexual).
Urinary Incontinence and Climacturia: “You Lose Your Body Management”
Sixty-five percent of survey participants reported changes in urinary patterns, primarily urinating more often following PCa, with 40 % reporting that problems with urinating limited their activities, and 25 % saying that they had difficulties urinating (FACT-P). In the open-ended survey items and interviews, men focused on the implications of urinary incontinence in the sexual and social arena. Many men reported climacturia, urinating during climax, as Pete (73, gay) commented: “It comes out, about the normal time of having an orgasm, but it just comes out in high pressure wee, instead of the normal white stuff.” Others reported urinary leakage during arousal or anal sex: Clive (70, gay) said that “when you get a bit excited you tend to leak a bit. You seem to lose your body management a bit”; and Lucian (51, gay) reported:
Due to the fact that I’m still slightly incontinent having anal sex is almost impossible as you have to relax, with the consequence of leakage, and even masturbation is difficult as I would leak sometimes quite a lot. So rather than be embarrassed I no longer have sex.
Lucian was not alone in avoiding sex. Many participants reported avoidance of casual sex as explaining climacturia was “too difficult,” “unsexy,” “humiliating,” or “embarrassing.” Negative reactions from prospective casual partners who were being informed of potential leakage of urine or blood were common, with Gordon (56, bisexual) explaining that when he met men on-line he would say “when I climax there’s usually some spurting of urine,” which acted as a “turn-off,” and sex would not happen. Avoidance of sex with a regular or long-term partner was also reported, due to the practical difficulties of negotiating the consequences of urinary leakage during sex:
I just had to put up with being incontinent for three years and wear pads and all that kind of thing, so in terms of sexual activity, you can imagine it’s extremely limited….I’d finish up very wet and I’d have to have towels all over the bed, and, you know, hardly worth doing, basically (Morris, 74, gay).
Reduction in Penis Size: “It’s a Blow to the Ego”
Many participants reported significant reductions in penis size following radical prostectomy or radiation treatment, going from what “a normal 6½, 7 inch penis” to “2–3 inches…literally, a couple of fingers and the thumb” (Gareth, 65, gay); losing “about half the length and half the diameter” (Mark, 45, gay); or having a penis that was “like in fantastically cold weather and it’s like that all the time” (Stanley, 78, gay), or was “slowly but surely disappearing…it’s not long before I’ll have a string on the end of it to find it to go to the toilet” (Pete, 73, gay). These changes were described as “bloody terrible,” “a blow to the ego,” “the most dramatic thing” to follow treatment, or a cause of suicidal ideation: “I would like to know the statistics of the suicides for guys, because, generally, the adjustment is absolutely mind blowing…because your dick shrinks and your diameter diminishes” (Drew, 64, gay).
Visibility and comparison of penis size between gay men, linked to negative consequences of penis size reduction, was evident in many accounts. For example, Scott (59, gay) said that “for a gay male, you know, we notice things like (loss of penis size). And other people do too.” Drew described comparing himself to his friends:
[I felt] bloody terrible, because I’ve always had a fairly decent dick…and a couple of our friends have got small dicks, so I thought, I’ve always thought, “you poor bastards,” and now I’m in the same boat as them.
Euan (66, gay) described the “shame” of walking around naked in the sauna: “you’ve got this bloody now little dick, it’s awful.” However, it was in the realm of sexual relationships that reduction in penis size was reported to have had the greatest impact. Mark (45, gay) described “losing the positive commentary” as his penis had previously been “a fair bit bigger than average,” which “was always a bit of a talking point when I had sex.” Scott (59, gay) said that “people used to be attracted to me” because of penis length, and that it was a “calling card” that has now “gone.” Cameron (65, bisexual) described being embarrassed about the fact that his penis was “often drawn right back into” his body, saying that “if I go into a relationship with someone I will have to say, ‘well, look, honestly, it used to be bigger than this’ [laughter].” These accounts demonstrate the negative meanings ascribed to real changes to the penis, in terms of self, gay identity, and sexual relationships.
Heath Care Professional Support for Gay Sexual Concerns: “We’re Usually not Considered”
Eighty percent of survey respondents reported having discussed PCa-related sexual changes with a health care professional (HCP), in a survey item developed for this study. In the open-ended survey responses and interviews, a majority of participants expressed dissatisfaction with the level of information received. HCP discomfort in discussing sexuality was a common report, as evidenced in Jim’s (64, gay) account, “my health care providers seemed more uncomfortable than me to discuss prostate cancer and sex.” For many men, absence of HCP knowledge of the impact of PCa on gay sex was a concern, with anal sex, reduction in penis size, the prostate as a site of pleasure, and absence of ejaculate, mentioned as areas where information had been sought, but was not forthcoming. The dynamics of GB relationships were also often “not considered” by HCPs, who made the assumption that patients are heterosexual:
Most health care professionals and others working in the prostate cancer field have no understanding of the different ways that prostate cancer can affect gay and bisexual men. Not just sexually, but in the non-sexual side of relationships. It’s as though we’re invisible. (Henry, 59, gay)
Even if gay sex was addressed, the specific concerns of bisexual men were described as being neglected, as Bill (age 65, bisexual) commented “people understand Gay and Str8 but Bi guys don’t fit so we seem to be ignored. It tears you apart internally and we get no help.” A number of participants reported being met with negative responses when they attempted to discuss the specifics of gay sex with HCPs. For example, Gareth (65, gay) reported that he asked his doctor about reduction in penis size, which had stopped him from having sex, and his doctor replied “I don’t want to know anything about your sex life,” which Gareth concluded “was because I was gay.” This resulted in participants feeling dissatisfied with their treatment, and having to obtain information about sexual changes elsewhere.
In contrast, other participants gave positive accounts of HCP interactions, which were described as “very good and very helpful” (Sam, 74, gay), as a result of having a HCP who “understands and is completely comfortable talking about gay male sexuality” (Scott, 59, gay), and which lead to the patient feeling “completely looked after” (Timothy, 65, gay). Many participants emphasized the importance of HCP education about the differences between gay and heterosexual men, to ensure that these positive experiences would be universal: “[HCPs] should be made aware that issues pertaining to GBT men are quite different to heterosexual men” (Clive, 70, gay); “I think all urologists need educating about the differences between gay and straight sex” (Graham, 74, gay).