Fertility Counseling for Transgender AYAs

Abstract

Transgender adolescents and young adults may wish to use cross-sex hormones as means to achieve identity goals. However, these hormones may impair future reproductive functioning. This case explores the complexities related to clinical decision-making concerning fertility and the use of cross-sex hormones in adolescent and young adult transgender populations.

Adolescents who experience gender dysphoria face unique challenges. Research clearly shows benefit to transitioning to the affirmed gender, including improvements to mental health, reduced levels of depression, anxiety and low self- esteem (Schmidt & Levine, 2015). Despite these benefits, the decision to transition has significant lasting implications, some of which adolescents and young adults may not yet be ready to evaluate on their own. Cross-sex hormones have many long-term effects, including potential impairment of future reproductive functioning. Estrogen therapy for transgender women (male to female) can lead to irreversible damage by decreasing sperm production, which can lead to azoospermia. Similarly, transgender men (female to male) undergoing testosterone therapy may experience amenorrhea and impaired fertility. There are now options available to preserve gamete materials that would otherwise be adversely affected as a result of transitioning, such as sperm and oocyte cryopreservation and testicular or ovarian tissue banking. Fertility preservation is thus a valuable tool that can provide transgender individuals with additional parenting options that accommodate the process of transitioning. Using the following case study, this article explores the complexities related to clinical decision-making concerning fertility and the use of cross-sex hormones in adolescent transgender populations.

Danielle is a 15 year old natal male who recently disclosed to her family and close friends that she identifies as female. She has been feeling depressed and is anxious to transition socially. She met with the psychiatrist in the Transgender Program, who diagnosed her with Gender Dysphoria, and referred her to Pediatric Endocrinology. She comes to the Pediatric Endocrinology visit with her parents to discuss starting cross-sex hormone therapy. During that discussion, Dr. Smith (the Pediatric Endocrinologist) discusses potential adverse long-term effects of treatment, including fertility impairment. They discuss referring Danielle to a sperm bank for cryopreservation, prior to starting hormone treatment. Her parents are interested in exploring this further, and can afford it. Danielle quickly responds “I don’t ever want to have children. If I change my mind later, I’ll just adopt.”

Such discussions are becoming increasingly common in pediatric clinics across the country. As public awareness and acceptance of the LGBT community grows, more adolescents and young adults are identifying as transgender at earlier ages (Olson, Forbes, & Belzer, 2011). Although limited, existing longitudinal data suggest that transitional treatment in adolescents has significant positive long term psychological effects, including the alleviation of gender dysphoria (de Vries et al., 2014). A much larger multi-site study of transgender youth is currently underway, and will track physical and psychological outcomes (Reardon, 2016). Major clinical practice guidelines recommend medical and surgical interventions as treatments for gender dysphoria (Adelson, 2012; APA, 2015; Coleman et al., 2012; Hembree et al., 2009). Transgender youth are now seeking medical care at earlier stages of development than ever before (Bonifacio & Rosenthal, 2015), creating a dilemma for families and providers about the timing of medical treatment, the cost and accessibility of care, and the potential for future genetically related offspring.

The Endocrine Society (ES) recommends that adolescents in Tanner Stage 2 of their pubertal development be prescribed GnRH analogues, such as leuprolide acetate, to suppress puberty followed by cross-sex hormone administration. While the ES recommends using cross-sex hormones “around age 16” and many providers begin to use them at age 14, there are instances in which they have been administered to children as young as 12 or 13 (Sherer, Baum, Ehrensaft, & Rosenthal, 2015). The delay in pubertal progression is intended to allow patients to further explore their gender identity, confirm the diagnosis of gender dysphoria, and consider the range of possible treatment options. Options may include any combination of changes to social presentation, masculinizing or feminizing hormones, and surgical gender confirmation procedures. These therapeutic interventions have numerous implications, one of which is the potential for infertility. Although GnRH analogues are not known to cause permanent gonadal damage, cross-sex hormones do impact fertility, and patients who elect to proceed immediately from pubertal suppression to puberty in their lived gender will never undergo the puberty of their natal sex. Therefore, discussions about long-term fertility options should take place prior to beginning pubertal suppression and again prior to transitioning to cross-sex hormones.

In the case described above, Danielle’s feelings of depression and inability to “fit in” socially are related to her transgender identity. She has been diagnosed with gender dysphoria, a diagnosis not solely indicated by gender nonconformity, but rather by the distress catalyzed by gender nonconformity (APA, 2013). Transitional treatment – in Danielle’s case, feminizing hormones – is recognized as the medically necessary treatment for that distress (WPATH Board of Directors, 2008). She is anxious to start treatment as soon as possible. Dr. Smith agrees that cross-sex hormone treatment may begin to alleviate her distress, but in addition to supporting Danielle’s present psychosocial needs, her medical team (including her psychiatrist, endocrinologist, and perhaps other providers such as a therapist) is responsible for ensuring that she and her family fully consider the potential future implications of her decisions.

Family Planning for Transgender Adolescents and Young Adults

In his groundbreaking 1966 book, The Transsexual Phenomenon, Harry Benjamin, a pioneer in the provision of gender affirming care of transgender individuals, remarked that “marriage [to a man] with the adoption of children is the goal” for most transgender women (Benjamin, 1966). While the notion of “family” for many transgender people is neither so proscriptive nor heteronormative as the one Benjamin outlined, data suggest that transgender people do indeed desire children at similar rates to the general public (De Sutter, Kira, Verschoor, & Hotimsky, 2002; Wierckx et al., 2012). Until recently, many transgender people regarded the impossibility of conceiving genetically related children after certain types of gender confirmation interventions as the “price to pay” for transition (De Sutter, 2001). Fortunately, fertility preservation is now possible for adolescents and young adults; however, some fertility clinics still decline to work with potential transgender parents, claiming that parental transgender identity could be harmful to any resulting children (Murphy, 2012). In an ethics statement about reproductive options for transgender people, the American Society for Reproductive Medicine (ASRM) repudiates the claims of those who believe that a parent’s transgender identity is in and of itself harmful to their children. They advise that “transgender persons have the same interests as other persons in having children,” and “providers should offer fertility preservation options to individuals before gender transition” (Ethics Committee of the American Society for Reproductive Medicine, 2015), which is an ethical opinion echoed elsewhere (Murphy, 2010). The ASRM asserts that clinics have an ethical obligation to treat transgender patients, and that those without “sufficient resources” to provide assisted reproduction technologies (ART) to transgender people have an ethical duty to refer to clinics that do. While the ASRM statement is unambiguous as to whether fertility options should be made available to transgender patients, decision-making considerations for how they should be provided, especially for adolescents and young adults, and how to address situations in which the adolescent refuses or if the family will not allow desirous adolescent fertility preservation, requires further guidance.

Clinical Communication & Shared Decision Making

Discussions regarding fertility preservation in this group remain challenging, from a provider-patient communication, psychosocial, and ethical perspective. Issues related to medical decision-making can present unique challenges for providers treating adolescent patients. Individuals aged 16 and younger may not have the ability to fully comprehend consequences or fully anticipate what they would desire as an actualized adult (Cauffman & Steinberg, 2000). Their understanding of near-term consequences is generally better developed than that of long-term risk, a paradigm well-developed in the care of adolescents making decisions near the end of life (Berlinger, Jennings, & Wolf, 2013). Consequently, they may be better able to make independent decisions regarding their current health – for example, what interventions they need to assuage their dysphoria – than about their potential future fertility.

Multiple guidelines (ASRM, ASCO, AAP) direct clinicians to discuss and offer referrals to adolescent and young adult cancer patients about threats to infertility and fertility preservation options due to gonadotoxic treatments. There are similar guidelines in other cohorts such as those with Turner’s (Oktay et al., 2015) or Klinefelter’s syndrome (De Sanctis & Ciccone, 2010) and for all of these cohorts the option is gamete storage for fertility preservation. The oncology literature abounds with identified barriers clinicians have encountered with young cancer patients who do not attend to the information about fertility loss. Some teen patients are unable to grasp the gravity of their decisions and employ avoidant or imaginative coping mechanisms (Quinn et al., 2013). Other young patients feel embarrassed by the discussion, or do not want their parents present (Quinn, Vadaparampil, Bell-Ellison, Gwede, & Albrecht, 2008). In some cases the barriers lie within the clinicians, who also feel embarrassed or not adequately trained to talk about fertility with young patients (Vadaparampil, Quinn, King, Wilson, & Nieder, 2008).

Though research is lacking on this topic in transgender youth, studies in oncology cohorts show regret in adulthood about missed opportunities for fertility preservation prior to gonadotoxic therapy (Carpentier & Fortenberry, 2010; Partridge et al., 2008; Prouty, Ward-Smith, & Hutto, 2006). Patients who received pretreatment fertility counseling (Letourneau et al., 2012) had improved quality of life over those who did not, even among patients who opted for no preservation. Further, the awareness that one is or may be infertile has also negatively impacted cancer survivor’s body image and romantic relationships.

A systematic review of teens with cancer capacity for decision making concluded adolescents have a desire to participate in cancer treatment decisions and are concerned about future fertility (Quinn et al., 2011).

For all patients, shared decision making strategies that facilitate dialogue between families, providers, and patients while taking into account the patient’s level of maturity and individual decision-making capacity have been shown to facilitate informed consent and decisions in the best interest of the patient (Quinn et al., 2011).

Providers may face particular challenges in cases where parents and patients disagree about fertility preservation, a problem known to occur in other patient populations at risk for fertility loss as well (Rives et al., 2013). Dr. Smith hopes to use a model of shared decision making that supports feedback from Danielle’s parents while prioritizing Danielle’s desires. Adolescents may rely on their families and health care providers in varying degrees to assist during decision making processes concerning fertility preservation. Reciprocally, they may also be unduly influenced by the wishes of others, especially if they don’t share their parents’ wish to preserve potential for genetic grandchildren. The final decision remains with Danielle, but Dr. Smith wants to be certain that she fully understands the risks associated with hormone therapy.

A useful framework for Dr. Smith for understanding and mediating disagreements between parents and children can be found in mature minor legislation. These statutes are frequently employed in adolescent decision-making around reproduction, particularly abortion rights, and tend to grant the ability to consent or refuse treatment to minors that are deemed “mature” in their decisional capacity, when parent and child disagree or there is no parent present to provide consent (Coleman & Rosoff, 2013). In Danielle’s case, she and her parents may have different, or even conflicting, goals. Dr. Smith is aware that Danielle’s recent disclosure of gender dysphoria has triggered stressful responses impacting family functioning. As her parents grapple with what they may perceive to be the loss of their son and with him the likelihood of grandchildren, they may overvalue the idea of an intervention that results in genetically related grandchildren. While Danielle may not have fully considered the long-term implications of declining fertility preservation when initially asked, Dr. Smith should nevertheless facilitate a discussion that neither overvalues potential genetically related children nor undervalues any heightened dysphoria that Danielle might experience as a result of fertility preservation. Additionally, he will encourage Danielle to consult with the program’s psychiatrist to discuss this decision. His overall aim should be to provide a supportive environment and adequate information to help Danielle clarify her own evaluation of fertility preservation, both in the context of her family and as an individual. As with most medical decision making, the goal is not to convince Danielle in one direction or another, but to provide her and her parents with all the necessary information to make an informed choice, including perhaps the notion that people at 15 often feel differently at 25 and 35.

Psychiatric Comorbidities

Transgender individuals experience higher rates of psychiatric comorbidities than the general population (Reisner et al., 2015). Higher rates of post-traumatic stress disorder (PTSD), major depression, conduct disorder, and suicidal ideation, plan or attempt have been shown in transgender youth (Mustanski, Garofalo, & Emerson, 2011). Further, adolescents with gender dysphoria/gender variance have higher than expected rates of autism spectrum disorder, specifically Asperger Syndrome; with reported rates ranging from 5% (Janssen, Huang, & Duncan, 2016) to 23%(Shumer, Reisner, Edwards-Leeper, & Tishelman, 2016). Therefore, it is imperative that a patient diagnosed with gender dysphoria, also be screened for additional mental health issues, not only at the initial assessment, but also throughout the course of treatment. Strang and colleagues recommend a psychosocial and medical treatment checklist that consists of establishing an appropriate clinical team; addressing and assessing the intensity of the gender feelings and urgency throughout the treatment process, providing psycho-education about gender outcomes, providing structure for gender exploration, assessing comorbidities over the course of treatment, and providing access to medical and support services for the transition as well as autism diagnoses (Strang et al., 2016). It is important for mental health professionals to be able to clarify differential diagnoses and ensure gender dysphoria is neither the result of nor misattributed to a different mental health concern.

Youth with a concurrent diagnosis of gender dysphoria and autism spectrum disorder or other mental health comorbidity may also be at increased risk for medical safety and compliance issues (Strang et al., 2016). It is suggested these youth may experience challenges in receiving regular medical check-ups, refilling prescriptions and taking safe and appropriate doses of their medications. As such, additional support for adherence to scheduled visits and medication schedules may be necessary.

While Danielle is understandably concerned with managing her depression, Dr. Smith is aware that she may come to embrace a decidedly different future than that which she envisions today. Based on WPATH guidelines, a mental health provider should assess the gender dysphoria, after which a qualified and trained medical or psychiatric care provider should assess for comorbidities may affect decision making capacity about hormone therapy and interventions such as fertility preservation, and ensure that adolescents receives adequate psychiatric care and social support. Additional support for managing hormonal and psychiatric mediations and associated medical visits may need to be provided. Specifically, comorbidities do not in and of themselves preclude medical management of transition, and in many cases anxiety and depression are caused by social stigma and gender dysphoria and resolved or ameliorated via medical transition (Colizzi, Costa, & Todarello, 2014), but moderate to severe depression, as well as autism spectrum disorder may impact an individual’s ability to consider future parenthood and fertility preservation (Berger et al., 1979).

Ethical Considerations

The potential harms, as well as the potential benefits, of fertility preservation, will vary greatly from individual to individual. In all cases, the goal of discussion should be to provide comprehensive counseling and preserve the autonomy of the patient, allowing them to make decisions that most closely align with their values, identity, and comfort. Provider surveys in other patient populations have demonstrated inadequate knowledge about fertility preservation (Fuchs et al., 2016). It is critical to refer patients and families to a center where medical and behavioral health providers are comfortable and knowledgeable addressing infertility risk, fertility preservation options, and information about how to access these options (such as cost, local facilities for fertility preservation) among transgender adolescents.

At 15, it is likely that Danielle would be physically able to produce sperm via masturbation, prior to beginning a hormone regimen. Since cost is not a barrier to her, and in fact, her parents are interested in this option, the potential barriers and harms for Danielle may be fewer than they may be for other transgender adolescents in a similar situation. However, each individual has a different relationship to their body, and to the type and intensity of their dysphoria. Dr. Smith, in collaboration with Danielle’s psychiatrists and/or therapist should try to understand whether or not Danielle is comfortable with masturbating to produce gamete material, and with the prospect of using biological material of her natal sex. If she is not, they should together weigh whether that discomfort is profound enough to cause significant distress, or to outweigh the potential long term benefits of having preserved fertility. In the event that Danielle is uncomfortable or too psychologically distressed to produce sperm for banking using masturbation, but is interested in fertility preservation, Dr. Smith could refer her to a urologist for testicular biopsy for sperm extraction.

If Danielle has been on hormone blockers, or is otherwise unable to produce sperm, the paradigm of potential harms shifts. In order to undergo fertility preservation, she would have to first undergo male puberty. In cases where puberty blockers are used, individuals must cease therapy for up to one year in order to resume the production of biological material. This could delay, potentially significantly, her ability to begin feminizing hormones. Furthermore, she may not be willing to undergo irreversible changes resulting from virilization, such as voice deepening. In one study of transgender women, the vast majority said that they believe fertility preservation should be offered to transgender women, and a small majority (most of whom identified as lesbian or bisexual) said that they would have availed themselves of it if possible. However, 90% of respondents said loss of fertility was not an important reason to delay their transition (De Sutter et al., 2002).

Danielle’s stated reasoning for her disinterest in fertility preservation – that she will “just adopt” if she decides she wants children – should be included in Dr. Smith’s discussion, and offers another avenue to ensure that Danielle is making an informed decision. He should help Danielle to understand that the complexity and expense of adoption in the United States should be factored into her reasoning for declining fertility preservation, and he could decide to involve a social worker and/or her other health care providers to offer more comprehensive counseling about these issues. However, as adoption is indeed possible and ART is likewise a complex and expensive process, he should also help her to explore how much she values the idea of a genetic relationship between her and any potential offspring as that is a salient difference between the two methods of family building. Danielle’s conception of how preserved sperm would, or would not, be used in the building of a family also bears on her decision. Trans women identifying as lesbian or bisexual were more likely to report interest in using fertility preservation as they are more likely to have a partner who could serve as a gestational carrier. While sexual preferences evolve throughout an individual’s life, at 15, Danielle’s understanding of her sexual identity will have already begun to solidify. As a result, her own sense of self can help to elucidate the usefulness of fertility preservation.

There are several factors that might present much more significant obstacles to fertility preservation for transgender adolescents. One is cost. Fertility preservation, which is typically not covered by insurance companies, can be a daunting expense for transgender adoles13cents who are already facing the expenses of hormone therapy. For example, ART may range from $1,000 to $10,000 (Wahlert & Fiester, 2013) and out of pocket monthly expenses for hormone therapy may range from $30 to $550 (Spack, 2013), depending on the drug. In Danielle’s case, fertility preservation costs for sperm cryopreservation are considerably less expensive when compared to the costs that natal female patients would face (on average, $5,000 for oocyte cryopreservation and an additional $600 yearly fee for storage (Devine et al., 2015; Hershberger, Sipsma, Finnegan, & Hirshfeld-Cytron, 2016). Another is the type of gamete preservation: for natal females, the invasiveness and time required for oocyte preservation are much greater than for natal males. While some transgender men can and do choose to become pregnant, for others the focus on parts and functions of the body typically associated with motherhood can heighten feelings of dysphoria.

Conversations about future fertility with transgender youth should include considerations for present fertility as well. Given Danielle’s initially stated preference to not have biological children, as well as her age, this is another way that her care team can promote and support her autonomous decisions. Although hormones tend to reduce or eliminate the possibility for pregnancy, all genders of transgender youth are at risk for unplanned pregnancy, especially early on in their transition (Rósa, 2016). A lack of adequate or applicable sexual education is one reason that LGBT youth have a higher rate of unplanned pregnancy than their straight counterparts (Lindley & Walsemann, 2015).

Conclusion

Fertility counseling is an area where significant improvement is needed in many different pediatric and adult cohorts at risk for gonadal damage. Much of the current literature in this area has focused on the oncologic population, where studies have shown that adolescents survivors rank fertility as an important life goal (Klosky et al., 2015), express regret about missed opportunities for fertility preservation, and demonstrate the importance of comprehensive and timely counseling with youth and families about fertility preservation(Stein et al., 2014). It is now clear that concerns about fertility loss are salient in other groups as well, including transgender youth. Research is needed to assess the desires, attitudes, and barriers with regard to fertility and genetic parenthood in transgender youth and adults, to better inform clinical practice. Given the challenges discussed in this case study, transgender adolescents choosing to transition to their affirmed gender need health care providers who are committed to assessing and supporting their short term and long term desires. Medical and behavioral health providers (such as psychiatrists, social workers, and therapists) should discuss these challenging cases as a team, to consider all perspectives and help provide optimal care. Networking with transgender programs at other centers may also help identify resources and learn from others’ experiences, in terms of approaches that are more or less effective. In this precarious context, providers must also function as or consult ethicists and seek the greatest benefit with the least risk for this vulnerable population.