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Background – Disorders of sex development (DSDs) also known as “intersex” are congenital conditions in which chromosomal, gonadal, and anatomical development mismatch. One in 4,500 infants is born with abnormalities of external genitalia, which are mostly unexplained in molecular terms. Androgen insensitivity syndrome (AIS) is a common cause of DSDs.

Objective – One of the three broad subdivided phenotypes of AIS are partial androgen insensitivity syndrome (PAIS). Feminization (i.e., undermasculinization) of the exterior genitalia at birth, secondary abnormal secondary sexual development at puberty, and infertility in individuals with 46, XY karyotype are the proof. In males, PAIS is common to observe a micropenis, hypospadias, and cryptorchidism. Women who have clitoromegaly and fused labia during puberty are characterized as individuals with PAIS.

Case – We reported a 13-year-old child with the chief complaint of primer amenorrhea. The patient was a girl but not yet got her menstruation. Patient was referred by a Endocrinology Fertility and Reproductive Consultant of OBGYN who had done chromosomal and hormonal analysis. We performed a laparoscopic explorative study where we did not find uterus, fallopian tubal, and ovaries. But, we found testis in the inguinal canal.

Conclusion – Decisions regarding gender assignment are still confronted between patient’s family and medical staff. The ambiguity of genital, physical, and psychosocial adjustment for sex assignment can determine the prognosis.

Purpose – Intersexuality is examined from a sociology of diagnosis frame to show how the diagnostic process is connected to other social constructions, offer new support that medical professionals define illness in ways that sometimes carries negative consequences, and illustrate how the medical profession holds on to authority in the face of patient activism.

Methodology/approach – Data collection occurred over a two-year period (October 2008 to August 2010). Sixty-two in-depth interviews were conducted with individuals connected to the intersex community including adults with intersexuality, parents, medical professionals, and intersex activists.

Findings – Medical professionals rely on essentialist understandings of gender to justify the medicalization of intersexuality, which they currently are doing through a nomenclature shift away from intersex terminology in favor of disorders of sex development (DSD) language. This shift allows medical professionals to reassert their authority and reclaim jurisdiction over intersexuality in light of intersex activism that was successfully framing intersexuality as a social rather than biological problem.

Practical implications – This chapter encourages critical thought and action from activists and medical professionals about shifts in intersex medical management.

Social implications – Intersexuality might be experienced in less stigmatizing ways by those personally impacted.

Originality/value – The value of this research is that it connects the sociology of diagnosis literature with gender scholarship. Additional value comes from the data, which were collected after the 2006 nomenclature shift.

Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex youth experiences into the growing body of literature on diagnosis disclosure for intersex patients.

Using gender structure theory as a model, 16 intersex youth were given in-depth surveys regarding their experiences with their intersex identity in individual, interactional, and institutional contexts.

Participants more positively experience intersex than the earlier generations of intersex people. They were not deeply troubled by their diagnosis as doctors have historically feared, and they are open about their diagnosis with their non-intersex peers and teachers. They also find peer support valuable.

Data was collected from a single event and cannot represent all intersex youth. Future research must continue to engage with intersex youth experiences both inside of and beyond activist and support group networks.

These findings are strong exploratory evidence for the importance of diagnosis disclosure for intersex youth. Policies of withholding intersex diagnoses in clinical and familial contexts should be reevaluated in light of the experiences of intersex youth.

Diagnosis disclosure for intersex youth creates the potential for increased medical decision-making participation and increased capacity for activism and community building around intersex issues.

Our results encourage future studies that center the experiences of intersex youth, for we conclude that theorizing the lived experiences of intersex people is incomplete without their perspectives.

The purpose of this paper is to explore the harms suffered by intersex children who are subjected to medically unnecessary genital-normalizing surgery (GNS) and the possible applicability of statutes prohibiting female genital mutilation (FGM) to certain cases of GNS to redress this harm in the USA.

Consulting publications by medical researchers and intersex activists alike, this comment reviews the procedures undertaken as part of GNS (most commonly including clitoral reduction) and the reasons behind these procedures. It also parses the language of federal and state statutes prohibiting FGM in the USA.

Surgical practices that include clitoral cutting when the procedure is not necessary to the health of the person on whom it is performed constitute FGM and are punishable under federal and certain state laws in the USA. GNS with clitoral reduction fits the definition of FGM because it is performed for cosmetic and social reasons, not medical necessity.

Acknowledging GNS with clitoral reduction as FGM is a crucial strategy to ensure that female-assigned intersex children’s rights to bodily autonomy are protected to the same extent as non-intersex children’s rights. Intersex legal activists in the USA should press for enforcement of FGM statutes as to female-assigned intersex children until the medical practitioners who continue to defend and perform GNS see the procedures as illegal genital mutilation.