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Infants with genital development considered atypical for assigned female sex may undergo feminizing genitoplasty (clitoroplasty and/or vaginoplasty) in early life. We sought to identify factors associated with parent/caregiver decisions regarding genitoplasty for their children with genital virilization. Longitudinal, observational study Twelve pediatric centers in the United States with multidisciplinary differences/disorders of sex development clinics, 2015-2020 Children under 2 years old with genital appearance atypical for female sex of rearing and their parents/caregivers Data on the child's diagnosis and anatomic characteristics before surgery were extracted from the medical record. Parents/caregivers completed questionnaires on psychosocial distress, experience of uncertainty, cosmetic appearance of their child's genitalia, and demographic characteristics. Urologists rated cosmetic appearance. For 58 patients from the study cohort with genital virilization being raised as girls or gender-neutral, we compared these data across 3 groups based on the child's subsequent surgical intervention: (i) no surgery (n = 5), (ii) vaginoplasty without clitoroplasty (V-only) (n = 15), and (iii) vaginoplasty and clitoroplasty (V+C) (n = 38). Fathers' and urologists' ratings of genital appearance were more favorable in the no-surgery group than in the V-only and V+C groups. Clitorophallic length was greater in the V+C group compared with the V-only group, with substantial overlap between groups. Mothers' depressive and anxious symptoms were lower in the no-surgery group compared with the V-only and V+C groups. Surgical decisions were associated with fathers' and urologists' ratings of genital appearance, the child's anatomic characteristics, and mothers' depressive and anxious symptoms. Further research on surgical decision-making is needed to inform counseling practices. [ABSTRACT FROM AUTHOR]

Background: Disorders/Differences of Sex Development (DSD) encompass congenital conditions with atypical development of chromosomal, gonadal, or anatomical sex. Due to the rarity and complexity of these conditions, strong evidence for clinical practices is scarce, leading to controversies in management., Objective: This study, part of a broader project, examines changes over time in the attitudes and beliefs of DSD healthcare providers, focusing on factors contributing to patients' life satisfaction and the influence of medical specialty, gender, and age., Methods: Participants included active members of the Pediatric Endocrine Society (PES) and the Societies for Pediatric Urology (SPU) at three time points: 2003-2004 (T1), 2010-2011 (T2), and 2020 (T3). A survey covering predictors of patient life satisfaction, attitudes and beliefs regarding DSD care and outcomes, and participant characteristics was administered. Data were analyzed using descriptive statistics and Generalized Estimating Equations (GEE)., Results: Demographics: Participation rates were 56% (PES) and 64.7% (SPU) at T1, 41.1% (PES) and 52.3% (SPU) at T2, and 25.6% (PES) and 51.2% (SPU) at T3. Most participants were male (T1: 70.6%, T2: 61.7%, T3: 70.6%). Factors Affecting Life Satisfaction: Both endocrinologists and urologists ranked "gender identity consistent with assigned sex" as most important. Over time, the endorsement of some factors, such as performing genital surgery at Centers of Excellence, increased, while others, like the influence of prenatal androgen exposure determining gender identity, varied by specialty and gender. Attitudes and Beliefs: Across 18 statements, responses indicated three clusters with strong agreement, moderate agreement, and strong disagreement. Statements on the importance of family background and avoiding gender discordance were consistently endorsed, while those on delaying hypospadias repair until consent were least endorsed., Discussion: The study highlights variability in beliefs about DSD management over time, influenced by specialty, gender, and age. Despite consensus on some care principles, discrepancies remain, particularly regarding the impact of prenatal androgens and the timing of surgical interventions. These findings underscore the need for regular interdisciplinary communication to align clinical practices with evidence-based guidelines and address subjective beliefs., Conclusion: The survey illustrates evolving perspectives among DSD healthcare providers, emphasizing the need for continued dialogue and education to bridge gaps between clinical evidence and practice. Collaborative efforts, such as the international I-DSD and the U.S. DSD Translational Research Network, are crucial for advancing patient-centered care in this field., Competing Interests: Conflicts of interest The authors have no conflicts of interest., (Copyright © 2024 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.)

Objective: A subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child's DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child's DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry.Methods: One hundred and thirteen caregivers (Mage = 32.12; 57.5% mothers; 72.6% Caucasian) of children (N = 70; Mage = 9.81 months; 65.7% female) with DSD were recruited from 12 DSD specialty clinics in the United States. Caregivers completed psychosocial measures at baseline, 6 and 12 months following genitoplasty, or study entry if parents elected not to have surgery for their child.Results: Caregiver illness uncertainty and both anxious and depressive symptoms were highest at baseline and decreased over time (ps < .05). Caregiver illness uncertainty predicted symptoms of anxious and depressive symptoms across all time points (ps < .05).Conclusions: Caregivers' perceptions of uncertainty about their child's DSD are highest soon after diagnosis, and uncertainty continues to predict both anxious and depressive symptoms across time. Thus, the initial diagnostic period is a critical time for psychological assessment and intervention, with parent illness uncertainty being an important clinical target. [ABSTRACT FROM AUTHOR]

Intersex people have variations in their sex characteristics that do not exclusively fall within binary definitions of male and female. This community experiences discrimination in the medical setting due to the pathologization of intersex bodies, including 'normalizing' genital surgeries without the child's consent. While research has explored biomedical aspects contributing to intersex variations, there is limited research centering intersex people's perspectives on their healthcare experiences. The aim of this qualitative study was to understand the experiences of intersex people in the medical setting, with the goal of providing recommendations to clinicians to promote affirming healthcare practices. Between November 2021 and March 2022 we conducted 15 virtual semi-structured interviews with members of the intersex community about their experiences with healthcare providers and perspectives on how their care could be improved. Participants were recruited through social media, with the majority residing in the United States. Through reflexive thematic analysis, 4 major themes were conceptualized: (1) the exclusion of intersex people in binary frameworks, (2) the common experience of medical trauma, (3) the value of psychosocial support, and (4) systemic change to address intersex healthcare. Recommendations were generated based on participants' narratives, including a recommendation for providers to use a trauma-informed approach to care. Healthcare providers must prioritize patient autonomy and ensure consent throughout their medical visits in order to promote intersex affirming care. Depathologization of intersex variations and comprehensive teachings of intersex history and medical care must be incorporated into medical curricula to mitigate experiences of medical trauma and to relieve the burden placed on patients to be their own medical experts and advocates. Participants shared the value of being connected to support groups and mental health resources. Systemic change is needed for the normalization and demedicalization of intersex variations and for the medical empowerment of the intersex community. • Intersex people are excluded in binary frameworks of sex and gender. • Pathologizing language in clinical settings harms intersex patients. • Autonomy should be at the forefront of intersex healthcare. • Healthcare providers must be more thoroughly educated on intersex variations. • Trauma-informed, patient-centered approaches are key when caring for intersex people. [ABSTRACT FROM AUTHOR]

US-American philosopher Norman O. Brown (1913-2002) was one of the very few twentieth-century intellectuals to situate hermaphroditism at the core of their work. Although Brown's publications became cult books of the then emerging protest subcultures and were eventually regarded as milestones in the history of Freudian revisionism, the reception of his views on hermaphroditism has been insubstantial. The present contribution focuses at first on Brown's attempt to supersede binary sexuality and its same-sex/other-sex combinatories by positing an ambit of hermaphroditic reconciliation that emerges from the depths of the unconscious, but is effectual only as an eschatological ideal. Against this backdrop, Brown's consequential neglect of Charles Darwin's universalization of corporeal hermaphroditism and of Magnus Hirschfeld's conception of human sexual intermediariness are analyzed and assessed.

This study reports the first cases of intersex (abnormal development of both male and female reproductive tissues in a gonad) paddlefish Polyodon spathula, an Acipenseriform species of large rivers in the central U.S. and in aquaculture worldwide. Despite a large, multi-decadal data set in Oklahoma, Montana, and North Dakota, intersex development was not observed until 2019, when two individuals were harvested from the Grand Lake/Neosho River stock in Oklahoma. This suggests that intersex development in mid-water, zooplanktivorous paddlefish is rarer than in bottom-dwelling sturgeons for which intersex development is regularly observed. Although contaminants are implicated in causing intersex development in other Acipenseriformes, more investigation is needed., (© 2020 The Fisheries Society of the British Isles.)

Purpose: We evaluated demographic, financial and support predictors of distress for parents of young children with disorders of sex development including atypical genital development, and characterized early parental experiences. This work extends our previous findings to identify those parents at risk for distress., Materials and Methods: Participants included mothers (76) and fathers (63) of a child (78) diagnosed with disorders of sex development characterized by moderate to severe genital atypia. Parents completed a demographic questionnaire, measures of anxious and depressive symptoms, quality of life, illness uncertainty and posttraumatic stress symptoms, and rated their satisfaction with the appearance of their child's genitalia., Results: Depressive and posttraumatic stress symptoms of caregivers were comparable to standardized norms while levels of anxious symptoms were below norms. A subset of parents reported clinically elevated symptoms. Overall 26% of parents reported anxious symptoms, 24% reported depressive symptoms and 17% reported posttraumatic stress symptoms. Levels of illness uncertainty were lower than those of parents of children with other chronic illnesses. Differences by parent sex emerged, with mothers reporting greater distress. Lower income, increased medical care and travel expenses, and having no other children were related to increased psychosocial distress., Conclusions: Early psychosocial screening is recommended for parents of children with disorders of sex development. Clinicians should be aware that financial burden and lack of previous parenting experience are risk factors for distress.

This study aimed to describe the demographic characteristics, hospital utilizations, patterns of inpatient surgical management, and the overall state/regional variation in surgery rate among patients with disorders of sex development (DSD). We analyzed the Nationwide Inpatient Sample from 2001 to 2012 for patients younger than 21 years. DSD-related diagnoses and procedures were identified via International Classification of Diseases, Ninth Revision (ICD-9) codes. We identified a total of 43,968 DSD-related admissions. Of these, 73.4% of the admissions were designated as female and 642 (1.9%) were inpatient surgical admissions. Among neonates, less than 1% underwent any type of genital surgery. Nonsurgical admissions were associated with longer length of stay and higher cost. There was no significant regional variation in the rate of DSD surgeries, but we observed higher concentrations of DSD surgeries in states associated with tertiary referral centers.

Purpose: Controversy exists on the necessity for and timing of genitoplasty in girls with congenital adrenal hyperplasia. Our knowledge of surgical preferences is limited to retrospective series from single institutions and physician surveys, which suggest a high rate of early reconstruction. We evaluated current surgical treatment for congenital adrenal hyperplasia at academic centers., Materials and Methods: We queried the Faculty Practice Solutions Center database to identify all female patients younger than 18 years with a diagnosis of congenital adrenal hyperplasia between 2009 and 2012. Procedures were identified by CPT codes for vaginoplasty, clitoroplasty and other genital procedures. Reconstruction type, age at surgery and surgeon volume were analyzed., Results: We identified 2,614 females in the database with a diagnosis of congenital adrenal hyperplasia who were seen at a total of 60 institutions. Of infants younger than 12 months between 2009 and 2011 as few as 18% proceeded to surgery within a 1 to 4-year followup. Of those referred to a pediatric urologist 46% proceeded to surgery. Of patients who underwent surgery before age 2 years clitoroplasty and vaginoplasty were performed in 73% and 89%, respectively, while 68% were treated with a combined procedure. A medium or high volume surgeon was involved in 63% of cases., Conclusions: Many patients with congenital adrenal hyperplasia in the database did not proceed to early reconstructive surgery. Of those referred to surgeons, who were possibly the most virilized patients, about half proceeded to early surgery and almost all underwent vaginoplasty as a component of surgery. About two-thirds of the procedures were performed by medium or high volume surgeons, indicative of the surgical centralization of disorders of sexual development., (Copyright © 2015 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.)

The conditions once known under the umbrella terms intersex and hermaphroditism are now generally being called disorders of sex development in medical settings. The terms might seem synonymous, but in fact there are significant differences with controversial consequences. Hermaphroditism, an older term that can still be found in many medical writings, is vague, demeaning, and sensationalistic, conjuring mythic images of monsters and freaks. In the 1990s, activists advocated intersex to describe discordance between the multiple components of sex anatomy, but that word alienated many parents of affected children, as it suggests a self-conscious alternative gender identity and sexuality. Disorders of sex development also refers to intersex, but it deemphasizes the identity politics and sexual connotations associated with intersex, avoids the degradation associated with hermaphrodite, and instead highlights the underlying genetic or endocrine factors that cause prenatal sex development to take an unusual path. I argue that using disorder is problematic, because it implies medical conditions in need of repair, when some intersex anatomies, though atypical, do not necessarily need surgical or hormonal correction. I advocate a less pathologizing new term, divergence of sex development, that might reduce some of the conflict over nomenclature and satisfy intersex people, their parents, and their doctors.