VIEWS AND REVIEWS

Infertility counseling (or the lack thereof) of the forgotten male partner William D. Petok, Ph.D. Private practice, Baltimore, Maryland

Men with infertility represent a significant percentage of the infertile population. However, public awareness of this fact is limited at best. Literature and other media have neglected the male component of reproduction other than its sexual nature. Men's emotional reactions to a diagnosis of infertility have been studied far less than those of women. However, there is a growing body of research indicating that men do feel the loss associated with a failure to conceive and have unique methods of adapting. At the same time resources available for infertile men are limited or underutilized. Several factors contribute to the underutilization, including narrow awareness, lack of high-visibility individuals willing to speak about the problem, and male avoidance of mental health services. Suggestions for Use your smartphone improving this situation are offered. (Fertil SterilÒ 2015;-:-–-. Ó2015 by American Society to scan this QR code for Reproductive Medicine.) and connect to the Key Words: Men, counseling, male factor, mental health, psychosocial Discuss: You can discuss this article with its authors and with other ASRM members at http:// fertstertforum.com/petokw-male-infertility-counseling/

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stimates are that infertility occurs in close to equal amounts for men and women. This takes into account instances where combined male and female factor exist (1). However, there are significant discrepancies in how male infertility is perceived by the general public compared with its female counterpart. Public awareness, the presumed nature of men, and limited professional resources are among the factors that merge to create this discrepancy. Thus, the forgotten male in our title.

PUBLIC AWARENESS Literature, both popular and biblical, focuses on female infertility. In the Bible, both Sarah, Abraham's wife, and Hannah, wife of Elkanah, struggle with infertility. Each eventually gives birth via what we presume is divine intervention. Sarah's child, Isaac, becomes the second of the three

patriarchs and Samuel, son of Hannah, goes on to biblical prominence as the judge who anoints the first king of Israel. We hear the anguish of the women who have difficulty with conception. But fertility problems of men are not noted in the Bible even though we can assume they occurred. Male infertility was known in early modern English literature. Seventeenth and 18th-century coffee house culture and literature apparently was one place where the discussion took place (2). No less a literary figure than Samuel Pepys wrote about his fears of infertility and solicited advice on how to conceive with his wife. There is speculation that his sterility was due to life-saving surgery to remove a bladder stone that may have had the unwanted consequence of prohibiting conception (3). Still, as with earlier literature, the majority of writing about fertility during this period focused on female conception problems.

Received April 8, 2015; revised and accepted April 29, 2015. W.D.P. has nothing to disclose. Reprint requests: William D. Petok, Ph.D., 5608 Greenspring Ave., Baltimore, Maryland 21209-4308 (E-mail: [email protected]). Fertility and Sterility® Vol. -, No. -, - 2015 0015-0282/$36.00 Copyright ©2015 American Society for Reproductive Medicine, Published by Elsevier Inc. http://dx.doi.org/10.1016/j.fertnstert.2015.04.040 VOL. - NO. - / - 2015

discussion forum for this article now.*

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Contemporary literature similarly abounds with reference to women and their fertility problems. Jane Smiley, Carlos Fuentes, Sylvia Plath, and Lansford Wilson are but a few of the prominent authors who tackle this topic. Michael Chabon's Son of the Wolfman is one of the rare works which addresses the psyche of a man unable to provide his wife with a child. Newspapers and magazines routinely offer reports of the famous and not so famous who have struggled with and overcome their infertility. Just as routinely, the story is focused on the woman's problems and how she achieved her dream of a child through one form or another or assisted reproductive technologies (ART). Mention of male partners in these stories is a sidebar at best. Quite by surprise, Jimmy Fallon, the comedian and host of the Tonight Show, spoke about his quest to form a family. Finally, a man is willing to talk publicly about this struggle and raise the visibility of male factor infertility. But the story, touching as it was, dealt with the couple's use of a gestational carrier to have their baby. Fallon eloquently described his feelings 1

VIEWS AND REVIEWS for the media, but the ‘‘breakthrough’’ of a man coming forward to discuss his own fertility struggles did not materialize. Instead, male-factor infertility in the popular press remains hidden to the public. One notable exception is Lance Armstrong, whose ordeal with testicular cancer and efforts at fertility preservation are well documented. Unfortunately, Armstrong does not make a good poster child for male-factor infertility awareness for other reasons. Social media, the current frontier for important popular information, is equally bereft of men's experiences. Using the search term ‘‘blog male factor infertility’’ will return a multitude of hits. The majority are written by women or physicians. It seems that men are voiceless when it comes to their lack of reproductive success. The net impact of this invisibility makes working with men who experience infertility an ongoing challenge. They have no popular yardstick against which to measure their own problem. As a result, they may view their infertility as so rare that they are oddities who would have nothing in common with other men. Coupled with a presumed reluctance of men to discuss their emotions, this seemingly makes it all the more difficult to provide the psychologic support that mental health providers believe could be helpful. I say ‘‘believe’’ because we presume that men would benefit from this support in the way that women do. Unfortunately, the literature on infertile men utilizing psychosocial supports is sparse.

THE EXPERIENCE OF INFERTILITY FOR MEN Reports of men's emotional reactions to a diagnosis of male-factor infertility are inconsistent. A variety of studies have demonstrated that men have emotional reactions to a diagnosis of male-factor infertility. They appear to be more distressed and have more negative responses to infertility than men in couples who seek infertility treatment where there is no male factor (4, 5). At the same time, other research shows that men are well adjusted and have no difference in distress whether or not they have a male-factor diagnosis (6). Hammarbarg et al. (7) looked at men 5 years after diagnosis and found that most men did not report negative effects of their male-factor infertility on either their partner relationship or sexual satisfaction. Some men even reported positive effects. The authors noted that cultures with more traditional gender roles than the Australian sample they reported on may produce quite different results. They also noted that few men valued or used infertility support groups. A good source of experiential information comes from the research of cultural and medical anthropology. This literature is extensive when it comes to women's reproductive experience. More than 150 ethnographic volumes have been written concerning women, reproduction, and women's health in the past 25 years alone, with the vast majority written since the turn of the century. Three volumes have been published concerning male reproductive health, and none have directly addressed fertility matters (8). In lamenting this absence of scholarly work, those authors note: 2

Men contribute not only their gametes to human procreation, but are often heavily involved and invested in most aspects of the reproductive process, from impregnation to parenting. Furthermore, men have their own reproductive issues and concerns, which may be connected to but also separate from women's reproductive health and well-being. That men may be major contributors to women's reproductive health and the health of offspring is also overlooked when men are left out of the reproductive equation. Thus men need to be reconceived as reproductive in their own right, an insight that is long overdue. (p. 3) Masculinity tied to fertility appears to be a universal phenomenon. Men in Greece tend to repress feelings of anxiety and have greater psychosomatic illness than their infertile wives. Because some African cultures see infertility as exclusively a female problem, male-factor infertility receives a high level of denial from all participants in the process, including caregivers. Protection of the male ego and a man's ‘‘superior’’ role is the norm (9). Speaking to a universally held belief regarding men and infertility Humphrey (10) noted: Whilst a sense of failure may be common to both sexes, it is only the proud male who regards it [infertility] as an affront to his sexual capacity. For him procreation has always served as a means of demonstrating his virility, whereas it is well known that a woman's fertility gives no indication of her sexual responsiveness. And no matter how bravely he has accepted the discovery at a conscious level, unconsciously the equation with impotence is likely to remain. Being defined as a man because of one's children can be culturally thematic. Indeed, the lack of reproductive success has been viewed as emasculating in some communities. Paternity can be perceived as a significant achievement and source of male identity. Men in the Muslim Middle East can demonstrate their masculinity by producing the most valued of children, sons (11). In these cultures the man who fails to father is seen as fragile and ineffectual and will seek to hide his infertility from those closest to him. Similarly, on the Indian subcontinent, many men are disgraced by their infertility (11). In a significant series of interviews with infertile men, Mason determined that men had difficulty understanding the nature of their loss and could struggle to express their feelings on the subject. These British men frequently saw a link between fertility and virility. The overtones of failure at the role of sexual being were considerable (12). Schover and Thomas make the point that men learn to cope with sadness by hiding their feelings. Toughness demands a denial of emotionality. Some use denial to such an extent that they fail to seek medical treatment. Conflating a low sperm count with erectile failure is common. No man wants to be known as ‘‘shooting blanks’’ (13). No man wants to talk about a condition that calls his sexual capacity into question. As Wischmann notes, higher rates of sexual VOL. - NO. - / - 2015

Fertility and Sterility® dysfunctions have been associated with male infertility. Erectile dysfunction and premature ejaculation appear at rates two or three times higher than in the general population (14). Looking further into perception of a diagnosis, Smith et al. (15) found that men who perceive an isolated male factor had lowered quality of life in sexual and personal dimensions than their counterparts without a male factor. Men who felt that they were solely responsible for the couple's failure to conceive experienced less sexual enjoyment and a greater sense of sexual failure. A subset of men in that study who did not have a specific diagnosis appeared to have problems discussing fertility issues with family and friends, believed others could or would not understand their concerns, and tended to isolate socially. Men have described their experience in a variety of ways that include a desire to avoid painful feelings and withdrawal from interaction because it was a problem they could not fix (16). The notion of alexithymia or ‘‘no words for emotions’’ describes a difficulty in identifying and communicating feelings that has been ascribed to infertile men (17). It is best understood as a continuous suppression of negative emotions. Conrad et al. found that infertile men have a tendency to react to a stigmatizing diagnosis of infertility with a suppression of feelings. The data suggest that these men are not suffering from a primary deficit in emotional processing. Rather, they are reacting to their diagnosis. In a rare newspaper account of male-factor infertility, a reporter provided the following quotes (18). One man wrote: ‘‘I feel, on some level, totally inadequate. It's not mental. It's not chemical. It's a depression in my very core. I almost want to take my penis and testicles and throw them away.’’ Another posted: ‘‘I wanted my wife to leave me, find a man she can love AND father her child. It was like, ‘What's the point of marriage?’ I literally wanted to just disappear.’’ One can not overlook the secretive nature of the oldest form of infertility treatment, the use of donor sperm. At the outset, the fact that the process was used was hidden from the recipient parents. Reports of the first artificial insemination in the United States that produced a live birth, performed by Sims, did not surface until 25 years after the fact and the identity of the donor is only speculation (19). Although the procedure is no longer a secret to those who use it, physicians have long recommended that the process remain a secret to others, presuming that to do so protects the child and the parents. This reputed protection of the man is related to the inaccurate conflation of fertility and sexual ability. Protection of a child deals with the belief that knowledge that her/his father had impaired fertility would be psychologically damaging. There is mounting psychologic evidence that this ‘‘protection’’ is unnecessary and may actually be harmful if the secret is later discovered (20).

INDICES OF RESOURCES AVAILABLE TO AND THEIR UTILIZATION BY MEN Extensive resources exist for the emotional and psychologic needs of those dealing with a diagnosis of infertility. These VOL. - NO. - / - 2015

resources are significantly skewed toward the needs of women. The American Society for Reproductive Medicine (ASRM), the Society for Assisted Reproductive Technology (SART), and numerous ART clinics provide websites with comprehensive information about infertility. Much of it is female focused and addresses medical considerations. Patient advocacy and education organizations such as Path 2 Parenthood (formerly the American Fertility Association) and RESOLVE do provide male-focused material on their websites. They also provide in-person or online support groups. Data from RESOLVE indicates that of their 251 support groups nationwide, only one is designated for men. Of those 251 groups, one additional group is run by a man and open to all (B. Campbell, RESOLVE, personal communication, March 18, 2015). Additionally, the same organization conducts an annual constituent survey that yields 1,400–1,700 responses. The organization reports that 97% of the respondents are female (B. Collura, RESOLVE, personal communication, March 17, 2015). Path 2 Parenthood's anecdotal data are similar. Multiple efforts at providing support groups for men fail (S. Barris, Path 2 Parenthood, personal communication, March 26, 2015). The Infertility Family Research Registry (IFRRregistry.org) is a volunteer database of individuals attempting to conceive or who have already built their family by means of treatment or adoption. It provides investigators with a pool of subjects for survey and other research projects. At present the database is 96.6% female (J. Stern, Dartmouth-Hitchcock Medical Center, personal communication, March 8, 2015). Before a patient gets to a mental health provider, he likely meets with a medical professional who provides the diagnosis. The distribution of professionals who belong to the ASRM based on the professional societies they belong to within ASRM is heavily skewed to those who treat female infertility. Members of the Society for Male Reproduction and Urology (SMRU), who typically treat male-factor infertility, are outnumbered by members of the Society for Reproductive Endocrinology and Infertility (SREI), who identify with treating female factor infertility by almost 4:1 (731:202). Those who indicate that their practice is focused more on male factor because they are andrologists or urologists number 320, whereas those specifying a focus on female factor number 4,583. Finding a professional who specializes in male factors is therefore more difficult than finding one who works with female factors. Research on resource allocation for infertility treatment in one Canadian province demonstrated that many procedures for the treatment of male-factor infertility were excluded from funding (21). The authors noted the disparity in medical research and therapy for male-factor problems as well. Perhaps of most interest, they reported that there was little if any attempt by patients to change the funding policies of this socialized medicine model. Possible reasons for this lack of protest are addressed later in the present review. Similar inequity has been demonstrated in the United States, where only six states of the 16 that mandate infertility treatment provide for male-factor evaluation or treatment (22). Cost-effectiveness reviews and research have looked at the nonsocialized medicine model in the United States 3

VIEWS AND REVIEWS (23, 24) and determined that cost-effectiveness and live birth outcomes can be improved with interventions aimed at the male partner. At the same time, these interventions may be overshadowed in popular media by techniques, such as intracytoplasmic sperm injection, that are more dramatic. A population-based analysis of urology male infertility specialists in the United States was conducted by Nangia et al. (25). They analyzed data from ART centers in the 2005 SART database, membership directories of SMRU and the Society for the Study of Male Reproduction, and statistics describing population density of men in their reproductive years from the United States Census Bureau. Their findings indicated wide variability in the distribution of urologists who specialize in male fertility. Many ART centers had no male specialists within a 60-minute travel time radius. Thirteen states had no specialists for male infertility at all. In other states, particularly in high-density population areas, ART centers and male specialists were well located. Although infertility is distributed about evenly between men and women, mental health providers who specialize in infertility are not. The Mental Health Professional Group of ASRM is the only organization in the United States whose ‘‘mission is to promote scientific understanding of the psychologic, social, and emotional perspectives of infertility patients.’’ As of March 6, 2015, slightly more than 7% identified as male (416 members: 32 male, 380 female, 4 no sex specification) (K. Welch, ASRM, personal communication, March 6, 2015). In the aggregate these data indicate that male fertility specialists are underrepresented, organized support networks are underutilized by men, and male mental health providers who specialize in infertility are almost invisible.

CONSIDERATIONS FOR IMPROVING COUNSELING TO INFERTILE MEN A variety of factors come into play when considering how to improve counseling for infertile men. We already know that men seek counseling less frequently than women do for many problems. Estimates of those seeking mental health services in the United States being women range from 67% to 86% (26.) Scholarship on men and counseling men is limited (26), and a review of the journal Psychology of Men and Masculinity finds no articles dealing with infertility other than the consequences of sexually transmitted diseases for the past 15 years. The underutilization of mental health services by men in general may be cultural in nature. In particular, Western culture requires men to be strong, be able to handle the rigors of life's stresses, and control their emotions without seeking help (27). Others point out that a significant determinant in deciding to seek mental health services is the endorsement of that behavior within a person's social network (28). Therefore, men may not seek professional help because there is little discussion of this topic with their male family members and friends because they avoid nonmasculine topics with other men. Rather, men tend to focus more on discussion of activities than emotions (29). 4

Another finding of the literature on men seeking mental health services is that stigma is a predictor of help-seeking in men. Stigma is an attribute that broadly discredits a person and reduces him ‘‘from a whole and usual person to a tainted, discounted one.’’ (30). It has been suggested that infertility is associated with the stigma felt by deformed individuals (31) and that men are considered to be more stigmatized by infertility than women, who tend to be offered sympathy (32). In addition, self-stigma or the perception of oneself as inadequate, may be acutely relevant for men because they would feel ‘‘less than’’ if they sought psychologic help (33). Because male-factor infertility is obscured from the public view, those with it may feel even more discredited and stigmatized. Greater stigma then leads to less help-seeking, creating a vicious cycle. Gender role conflict is the negative outcome that is the result of adhering to or deviating from culturally defined norms (34). This conflict can lead to patterns of behavior that include restricted expression of emotions. Although many men may value the ability to remain calm in a crisis, it can lead to an inability to emotionally connect in relationships. Infertility is a crisis that can strain one of a man's notions of gender role, that of progenitor. Restricting one's emotional expression reduces opportunities for support from a partner and others. Male gender role conflict regarding infertility can be the result of not feeling ‘‘masculine enough’’ to produce a child. There is evidence that men with higher gender role conflict have greater negative attitudes toward counseling services (35) and are less likely to seek those services. In fact, these men may even see help-seeking as a threat (36). There is evidence that men who seek social support as a coping strategy for infertility have lower levels of social and relationship stress. Unfortunately, only 8% of the men in that study had a male-factor fertility problem (37), so generalization to all men is limited. A study of European men with infertility found that involuntary childlessness was emotionally problematic for all men in the subject pool. An additional finding that seems to contradict research on stigma is that these men were open about their infertility (38). Individuals could chose that they would disclose: ‘‘1) not to other people; 2) only to close people; [or] 3) to most people I know.’’ Most subjects selected the option of disclosing ‘‘only to close people,’’ which was consistent across diagnostic groups. One could question if ‘‘only to close people’’ is actually open or not. Another finding regarding this topic is that individuals are comfortable discussing their infertility with a stranger (39), but not with those they know well, because of the anonymity that a stranger provides. A significant review of the impact of infertility on men indicates that discussion with clinic staff is an important source of support (13). But research that is focused on the man's experience is limited. In a review of this literature, a mere three of 51 studies regarding patient perspectives on care were focused on men and their experience (40). In general, the inappropriate conflation of infertility with sexual prowess coupled with gender role conflict created by failure to inseminate and a significantly reduced likelihood of seeking help for the emotional stress of the situation has VOL. - NO. - / - 2015

Fertility and Sterility® the potential to cause significant personal and interpersonal distress for the infertile man and his partner. A growing body of research and scholarly thought indicates that men who receive counseling from male therapists benefit in ways that are not possible with female therapists. The ability to form kinship bonds with a man, the credibility of a similar ‘‘manhood’’ experience, a unique access to an empathic connection, and the ability to help men experience nurturance and connection with another man without using women as a sole source of emotional support have all been cited as advantages (41, 42). All of these seem to be relevant when considering infertile men. In particular, creating an atmosphere in which ‘‘manhood’’ is broadened beyond the popular and narrow constraints that many men experience has significant value in this arena. Public awareness of male infertility is dismally low. The Centers for Disease Control and Prevention (CDC) convened the Advancing Men's Reproductive Health meeting in 2010 and released the proceedings in 2015 (43). That meeting was organized originally to provide CDC staff with information ‘‘into the emerging areas of public health activities related to male reproductive health’’ and signaled a growing awareness of the issue of male-factor infertility in the governmental sector. Although downloads of the report have been limited to date, CDC did announce its release to more than 30,000 individuals and organizations earlier this year. CDC is also seeking to revise the data it collects on male infertility to include the type of male factor. Up to this point, the only data collected have been simply yes/no regarding male infertility. All the other data reported in the annual National ART Surveillance report are focused on female factors. CDC is commended for its effort to improve the visibility of male infertility and raise public awareness through its auspices. While it seems to be important for public policy makers to recognize the importance and impact of male-factor infertility, it appears to be equally, if not more, important that wider publicity take place to increase awareness. To that end, public figures with male-factor infertility who are willing to make their condition known will create greater consciousness and reduce stigma at the same time. Research on improving men's use of counseling services for depression (44) suggests that the language used to refer men for counseling affects how it is perceived by the men: For instance, when discussing the nature of counseling with potential or new male clients, counselors might consider framing the process as a solution-focused, cost-effective, client-directed team effort. Instead of describing counseling as a time for sharing vulnerabilities and feelings, counselors may want to use language more compatible with traditional masculine gender roles (e.g., ‘‘tackle the problem,’’ ‘‘defeat depression,’’ ‘‘team up’’) to create an environment in which men will feel more comfortable to explore their problems. . It may also be important to directly address issues related to any self-stigma that a potential or current male client is experiencing. (p. 308) VOL. - NO. - / - 2015

Extrapolating from the above research, mental health referral materials provided to men with infertility should be tailored to the specific issues that men are known to deal with when diagnosed with male-factor infertility. At present the major medical organizations that address male-factor infertility have little or no male-directed information of this nature. Improved and expanded websites with fertility information targeted to men is needed. Social media campaigns that direct attention to this information would be useful, particularly if they are initiated or rebroadcast by influential individuals. Several authors have suggested relatively simple methods of improving the use of psychosocial counseling by men (45, 46): 1. Provide pretreatment educational material specific to men. 2. Explain the potential benefits of infertility counseling for both men and women. 3. Offer testimonials that reflect typical male concerns about counseling and encourage men to seek psychologic support. 4. Introduce support before medical interventions, indicating that it is integral part of care. Paying attention to male-specific concerns, care should be taken that materials use language that is nonthreatening to men. Label counseling sessions as meetings, conversations, or consultations as opposed to counseling or therapy. Wischmann (14) offers additional thoughts on useful counseling strategies, including how to counsel couples in a way that incorporates men rather than marginalizing them and addresses men's ambivalence about seeking help and discomfort with emotional matters. He also highlights future directions for research that addresses the specific needs and concerns of men. Among others, these include studies on the psychologic impact of invasive treatments for men, such as testicular sperm extraction, the impact of physician and counselor gender, and the needs of families and children conceived with donor sperm. Medical providers can and do set a tone for how mental health services are viewed by patients. An awareness of the unique psychosocial issues inherent in male-factor infertility is an important component of comprehensive care, particularly when the use of donor sperm is indicated. When providers indicate that consultation with a mental health provider is routine and desirable for the support it offers, patients will view it as such. On the other hand, use of pejorative terminology sets a negative expectation for the process and may result in rejection of it. Terms such as ‘‘shrink’’ or ‘‘required psych eval’’ should be avoided. Instead, normalizing the interaction with a mental health provider with language such as ‘‘routine,’’ ‘‘best practice,’’ and ‘‘consultant’’ are preferable. As with most patients, men are comfortable with statements such as ‘‘many men experience concerns about their low sperm count and what it means about their ability to have a family. Have you experienced similar thoughts or feelings?’’ This type of statementquestion technique is a good way to initiate a dialogue on the topic and normalize it at the same time. With men, who 5

VIEWS AND REVIEWS typically do not seek support but clearly benefit from it, normalizing the idea of supportive consultation seems to be paramount to improve its utilization.

SUMMARY Male-factor infertility occurs at a significant rate, yet public awareness of the problem is minimal. Popular media pays little if any attention to the matter, and men with the problem appear to be reluctant to discuss it compared with their female counterparts. A significant body of evidence indicates that men can experience negative emotional consequences as a result of a diagnosis of male-factor infertility and would benefit from psychologic supports. However, the most effective resources for men are available in meager quantity and those that do exist are poorly utilized. Research regarding the complex psychologic nature of men does point to how these resources and their use can be improved. Organizations that provide treatment for infertile individuals are in a position to lead the way in remembering the forgotten male and his needs.

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Infertility counseling (or the lack thereof) of the forgotten male partner.

Men with infertility represent a significant percentage of the infertile population. However, public awareness of this fact is limited at best. Litera...
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