Intersex medical interventions (IMI), sometimes known as intersex genital mutilations (IGM), are surgical, hormonal and other medical interventions performed to modify atypical or ambiguous genitalia and other sex characteristics. These interventions are performed primarily to create a more typical bodily appearance or to reduce future problems such as risk of cancer. The history of intersex surgery has been marked by debate because some reports have associated certain procedures to changes in sensation, sexual function, and long term health concerns.Submission 88 to the Australian Senate inquiry on the involuntary or coerced sterilisation of people with disabilities in Australia , Australasian Paediatric Endocrine Group (APEG), 27 June 2013 Additionally, non-consensual surgery or stigmas surrounding intersex individuals may lead to feelings of dysphoria and negative mental health outcomes.Jeremy C Wang, Katharine B Dalke, Rahul Nachnani, Arlene B Baratz, Jason D Flatt, Medical Mistrust Mediates the Relationship Between Nonconsensual Intersex Surgery and Healthcare Avoidance Among Intersex Adults, Annals of Behavioral Medicine, Volume 57, Issue 12, December 2023, Pages 1024–1031, https://doi.org/10.1093/abm/kaad047
Interventions on intersex infants and children are increasingly recognized as human rights issues. Intersex organizations, and human rights institutions increasingly question the basis and necessity of such interventions. In 2011, Christiane Völling won the first successful case brought against a surgeon for non-consensual surgical intervention. In 2015, the Council of Europe recognized, for the first time, a right for intersex persons not to undergo sex-assignment treatment and Malta became the first country to prohibit involuntary or coerced modifications to sex characteristics.
Purposes of genital reconstructive surgery The goals of surgery vary with the type of intersex condition, with some being medically necessary while others are cosmetic. Rationales usually include one or more of the following:
Physical health rationales: to improve the potential for fertility to provide an outlet for menstruation to prevent or reduce urinary tract infections or obstruction to reduce risk of cancer in gonads with high risk levels to close open wounds or exposed internal organs to improve urinary or fecal continence.
Psychosocial rationales: to alleviate parental distress over the atypical genital appearance. to make the appearance more normal for the person's sex of rearing to reduce effects of atypical genitalia on psychosexual development and gender identity to improve the potential for adult sexual relationships
Intersex organizations tend to criticize surgeries that are performed primarily for aesthetic reasons rather than medical necessity, with Organization Intersex International Europe referring to them as intersex genital mutilation. InterACT is also against non-consentual intersex surgeries, though it defines these surgeries as "non-lifesaving procedures to change natural variations in genital appearance or reproductive anatomy" and not procedures vital for an intersex person's health. Since most of these unnecessary surgeries are performed on children under the age of two, InterACT advocates for waiting until the child is old enough to decide what they want for their body.
Rationales for intersex medical interventions are subject to scrutiny, particularly as the consequences of surgical interventions are lifelong and irreversible. Questions regarding physical health include accurately assessing risk levels, necessity and timing. Cancer risk as a surgical justification has declined. Most intersex variations pose a low cancer risk. Monitoring gonads for cancer instead of removing them has been recommended since the mid 2000s. Psychosocial rationales have been debated because they often involve concerns from parents, society, and culture. There remains no clinical consensus or clear evidence regarding surgical timing, necessity, type of surgical intervention, degree of difference warranting intervention and evaluation method. Such surgeries are still widely discussed, including community activism, and multiple reports by international human rights and health institutions and national ethics bodies.
Types of intervention
Interventions include: surgical treatment hormone treatment genetic selection and terminations
Surgical interventions can broadly be divided into masculinizing surgical procedures intended to make genitalia more like those of typical XY-males, and feminizing surgical procedures intended to make genitalia more like those of typical XX-females. There are multiple techniques or approaches for each procedure. Some of these are needed for variations in degrees of physical difference. Techniques and procedure have evolved over the last 60 years. Some of the different techniques have been devised to reduce complications associated with earlier techniques. There remains a lack of consensus on surgeries, and some clinicians have stated that some procedures lack sufficient supporting evidence.
Some children receive a combination of procedures. For example, a child regarded as a severely undervirilized boy with a pseudovaginal perineoscrotal hypospadias may have midline urogenital closure, third degree hypospadias repair, chordee release and phalloplasty, and orchiopexy performed. A child regarded as a severely virilized girl with congenital adrenal hyperplasia (CAH) may undergo both a partial clitoral recession and a vaginoplasty.
Masculinizing surgical procedures
Orchiopexy and hypospadias repair are the most common types of genital corrective surgery performed in infant boys. In a few parts of the world 5-alpha-reductase deficiency or defects of testosterone synthesis, or even rarer forms of intersex account for a significant portion of cases but these are rare in North America and Europe. Masculinizing surgery for completely virilized individuals with XX sex chromosomes and CAH is even rarer. An early procedure was performed by London surgeon Thomas Brand in 1779.
Orchiopexy for repair of undescended testes (cryptorchidism) is the second most common surgery performed on infant male genitalia (after circumcision). The surgeon moves one or both testes, with blood vessels, from an abdominal or inguinal position to the scrotum. If the inguinal canal is open it must be closed to prevent hernia. Potential surgical problems include maintaining the blood supply. If vessels cannot be stretched into the scrotum, or are separated and cannot be reconnected, a testis will die and atrophy.
Hypospadias repair may be a single-stage procedure if the hypospadias is of the first or second degree (urethral opening on glans or shaft respectively) and the penis is otherwise normal. Surgery for third-degree hypospadias (urethral opening on perineum or in urogenital opening) is more challenging, may be done in stages, and has a significant rate of complications and unsatisfactory outcomes. For severe hypospadias (3rd degree, on perineum) constructing a urethral tube the length of the phallus is not always successful, leaving an opening (a "fistula") proximal to the intended urethral opening. Sometimes a second operation is successful, but some boys and men have been left with chronic problems with fistulas, scarring and contractures that make urination or erections uncomfortable, and loss of sensation. It is increasingly recognized that long-term outcomes are poor.
Epispadias repair may involve comprehensive surgical repair of the genito-urinary area, usually during the first seven years of life, including reconstruction of the urethra, closure of the penile shaft and mobilisation of the corpora.
Urogenital closure closure of any midline opening at the base of the penis. In severe undervirilization a boy may have a "pseudovaginal pouch" or a single urogenital opening in the midline of the perineum. Potential surgical problems: The most complicated aspect of closure involves moving the urethra to the phallus if it is not already there (i.e., repairing a perineal hypospadias). Fistulas, scarring, and loss of sensation are the main risks.
Gonadectomy (also referred to as "orchiectomy") removal of the gonads. This is done in three circumstances. (1) If the gonads are dysgenetic testes or streak gonads and at least some of the boy's cells have a Y chromosome, the gonads or streaks must be removed because they are nonfunctional but have a relatively high risk of developing gonadoblastoma. (2) In rare instances when an XX child has completely virilizing congenital adrenal hyperplasia (Prader stage 5), the ovaries can be removed before puberty to stop breast development and/or menstruation. (3) Gonadectomy can be performed in the equally rare instance of a child with true hermaphroditism virilized enough to raise as male, in which ovaries or ovotestes can be removed. A lifetime of hormone replacement will be required, to avoid osteoporosis and enable sexual functioning.
Chordee release is the cutting of ventral penile skin and connective tissue to free and straighten the penis. A mild chordee, manifest as a well-formed penis "bent" downward by subcutaneous connective tissue, may be an isolated birth defect easily repaired by releasing some of the inelastic connective tissue on the ventral side of the shaft. In a complete chordee the phallus is "tethered" downward to the perineum by skin. A more severe chordee is often accompanied by a hypospadias and sometimes by severe undervirilization: a perineal "pseudovaginal pouch" and bifid ("split") scrotum with an undersized penis. This combination, referred to as pseudovaginal perineoscrotal hypospadias, is in the spectrum of ambiguous genitalia due to a number of conditions. Scarring and contracture are occasional complications, but most unsatisfactory outcomes occur when a severe hypospadias needs to be repaired as well. Long-term complications can include fistulas between colon or upper rectum and skin or other cavities, or between urethra and perineum. Loss of sensation.
Cloacal repair is among the most complex of the surgeries described here. Bladder exstrophy or more severe cloacal exstrophy is a major birth defect involving inadequate closure and incomplete midline fusion of multiple pelvic and perineal organs as well as the front of the pelvis and lower abdominal wall. The penis and scrotum are often widely bifid (the two embryonic parts unjoined). The penis often cannot be salvaged, although the testes can be retained. Repair may involve closure of the bladder, closure of the anterior abdominal wall, colostomy (temporary or permanent) with reconstruction of the rectum. If the halves of the phallus cannot be joined, they may be removed. The smallest defect in this spectrum is an epispadias. Surgical repair for this is primarily a phalloplasty. Potential surgical problems: Surgery for the more severe degrees of cloacal exstrophy is extensive and usually multistage. A variety of potential problems and complications can occur, including need for long-term colostomy or vesicostomy. In many cases a functional penis cannot be created. Scarring is often extensive and the lower torso severely disfigured even with fairly good outcomes.
Phalloplasty is a general term for any reconstruction of the penis itself, especially for more unusual types of injuries, deformities, or birth defects. The principal difficulty is that erectile tissue is not easily constructed and this limits the surgeon's ability to make more than minor size changes. Construction of a narrow tube lined with mucosa (a urethra) is a similar challenge. Minor revisions of the skin are rarely followed by problems. More complicated reconstruction may result in scarring and contracture, which can distort the shape or curvature of the penis, or interfere with erections or make them painful.