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Healthcare for intersex people throughout their lives From Wikipedia, the free encyclopedia
Intersex healthcare differs from the healthcare of endosex people due to the stigma towards and health needs of intersex people.[1] Intersex healthcare is impacted by a history of concealing information from patients and medically unnecessary surgeries that continue to be performed.[2][3] 1.7% of the general population is estimated to be intersex.[4][5] Healthcare for intersex people can include treatments to improve the mental, cognitive, physical, and sexual health of intersex people. The need for and type of care can vary depending on one's intersex variation.
Intersex conditions have been documented since antiquity, and began to be studied by doctors in the late 1800s.[6] Medical professionals in Great Britain, France, and the U.S. began searching for definitive markers to determine what was thought to be the intersex person's true sex.[6] These determinants were used to inform the patient of their true sex with the expectation that the patient would subsequently change to fit social norms.[6]
In the 1930s, surgeries intended to correct the genitals of intersex people were developed and became a standard treatment.[2][7] At the time, surgeon Lennox Ross Broster described that corrective surgery would cause patients to "lose their acquired male characters, and revert to their normal feminine ones...[and] return to normal sexuality psychologically."[7] In the 1940s, boundaries were created to separate those who had physical intersex variations, and those who desired sex reassignment without physical variations.[7] This served to provide surgical procedures only to intersex people, while directing transgender people towards psychological services.[7]
In the 1950s, John Money theorized that children were gender neutral until the age of two, and gender could be assigned based on how a child was raised.[2][7] This further pushed surgeries for intersex people, young children in particular.[2] Clinicians often hid that a child was intersex both from patients and their parents.[2]
That same decade, medical advances emerged to evaluate a fetus' sex and birth defects such as ultrasound, amniocentesis, and the discovery of the HLA system and its role in pregnancy.[8][9] As technologies advanced, clinicians became able to detect intersex conditions such as congenital adrenal hyperplasia and Turner syndrome before the birth of the child.[10][11]
During the 1990s, intersex activists challenged the use of corrective genital surgery and the stigma around intersex variations.[12][13] In 2005, the European Society for Paediatric Endocrinology and the Wilkins Pediatric Endocrine Society held a conference with 50 international experts and two intersex participants decide which term should be used to refer to people with intersex variations.[14] The term disorders of sex development, abbreviated as DSD, was chosen.[14] In a 2006 consensus statement the adoption of the term DSD was purposed.[15][16]
The American Academy of Pediatrics defines disorders of sex development as "congenital conditions in which development of chromosomal, gonadal, or anatomical (genital) sex is atypical for that expected for a male or female."[17] Intersex conditions result in a combination of male and female structures, such as having both a womb and testes; atypical genital appearance, such as a closed vagina; or missing or underdeveloped reproductive organs, such as a vaginal opening with no womb.[18] Other intersex conditions may result in genitals expected of one's sex, but differing chromosomes (having only an X chromosome, XXY chromosomes, etc.)[18]
The term "disorders of sex development" is contentious as some organizations and intersex advocates believe that being intersex should not be pathologized. For instance, Planned Parenthood describes being intersex as a "naturally occurring variation" rather than a medical problem.[19] Professor Elizabeth Reis supports changing the term to divergence of sex development rather than disorder, writing that "using divergence, intersex people would not be labeled as being in a physical state absolutely in need of repair."[14]
Some parents of intersex children prefer the term disorders of sex development because the term intersex evokes ideas of sexuality or that their child is a third gender rather than a boy or girl.[14] Some people with intersex variations prefer the term DSD because they see their variation as a medical condition rather than an identity.[16]
The term intersex has also been criticized by clinicians and parents who believe the term only applies to those with ambiguous genitals or whose chromosomes and anatomy do not align.[16] Disagreement remains over which variations should be considered intersex.[20]
Bone health is a common concern for intersex patients. For instance, people with complete androgen insensitivity syndrome (CAIS) have low bone density as a result of "decreased circulating estrogen and skeletal resistance to androgen action."[21] People with androgen insensitivity syndrome who have undergone a gonadectomy no longer produce endogenous hormones.[21] This necessitates the use of long term hormone therapy to maintain bone health.[22]
Turner syndrome, gonadal dysgenesis, Klinefelter syndrome and congenital adrenal hyperplasia (CAH) can also result in issues in bone development.[23][24] In Klienfelter syndrome and gondal dysgenesis, this is caused by insufficient sex hormones.[23] In CAH, it is due to excessive adrenal androgen as well as life long treatment with glucocorticoid, a type of steroid.[23][25][26] Bone health is maintained through monitoring bone mineral density using dual-energy x-ray absorptiometry and providing hormone replacement therapy to prevent osteoporosis.[27][10][28][24]
Hormone replacement serves additional purposes other than bone health. In those with CAH, steroids called mineralocorticoids help regulate salt and water in the body to prevent salt-wasting disease.[29][30] In some intersex people, oestrogen or testosterone is needed to induce puberty.[31] This is important to help the body mature and develop secondary sex characters, to allow intersex people to develop alongside their peers, and prevent delayed intellectual, social, and emotional development.[31]
Some intersex variations result in an increased risk of cancer. For example, atypical gonads in those with Swyer syndrome are at an increased risk of developing cancer, specifically germ cell tumors, if not removed.[27][32]
Some intersex variations are associated with metabolic and cardiovascular conditions. In the case of CAH, it is associated with hypertension, a higher body mass index, and insulin resistance.[33][34] Intersex variations in sex chromosomes are associated with an increased risk of both type one and type two diabetes.[34] Turner syndrome, one such chromosomal intersex variation, is also associated with hypertension.[10]
Intersex conditions can coincide with other congenital anomalies.[34] People with 46 XY DSD are more likely to be born with heart defects.[34] Those with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) type 2 can also be born with defects related to their hearing, vertebrae, upper urinary tract, and kidneys.[35] Doctors will check for congenital anomalies in patients with suspected MRKH by using MRI and/or transabdominal ultrasonography.[35] Those with androgen insensitivity syndrome or hypospadias may also have atypical kidneys or upper urinary tract.[34]
Fertility varies depending on the intersex variations one has. For instance, people with Turner syndrome can become pregnant with donor eggs or, more rarely, become pregnant unassisted; in contrast, men with 46XX are always infertile.[36] Fertility counseling is desired by intersex people and families; this counseling can be provided by a clinician, though gaps in knowledge about intersex fertility are common.[37] Procedures such as testicular sperm extraction and in vitro fertilization can help some intersex people have children.[36] Intracytoplasmic sperm injection, a type of in vitro fertilization in which sperm is directly injected into an egg, can further assist those with 5-alpha-reductase type 2 deficiency and Klienfelter syndrome to have children.[36][38]
Some intersex people are more likely to experience sexual dissatisfaction or difficulty in sexual functioning. For example, 39.3 of men with Klienfelter syndrome and 37.1 to 44.1 percent of women with XY DSD are unsatisfied to very unsatisfied with their sex life compared to 20.8 percent of the general population.[39] This is not universal across all intersex conditions as those with Turner syndrome and CAH report sex life satisfaction closer to that of the general population.[39]
Some intersex conditions are associated with genital dissatisfaction due to concerns about penile length, vaginal length, size of clitoris, etc.[39] Intersex people who have undergone genital surgery may experience reduced sexual sensation and functioning as a result.[40] Though for intersex conditions like CAH and hypospadias, sex life satisfaction did not vary compared to controls.[41] In the case of CAH, relationship dynamics and how one participates in and responds to sexual situations may matter to sexual functioning more than genital anatomy.[41]
According to a research paper in Obstetrics & Gynecology, intersex patients should be offered psychological support or sex therapy if they express anxiety about sexual function or fear of intimacy.[42] A sexologist can be included in a multidisciplinary team to help address sexual health concerns.[39] Hormone replacement therapy is used to maintain sexual functioning for some intersex conditions such as ovotesticular DSD.[43]
Intersex people are at a high risk of developing depression and PTSD. A survey of intersex adults in the U.S. found that respondents 61.1 reported having depressive disorders compared to 19 percent of the general adult population.[44] PTSD was also reported by 40.9% of those surveyed.[44] An increased risk of suicidality has been found; in a European study, 6.8 percent of intersex people age 16 or older reporting attempted suicide compared to 1.8 percent in the control group.[45] Intersex people can face issues that worsen their mental health such as stigma and discrimination, bullying, family rejection, tension with partners about fertility, etc.[46]
It is not uncommon for intersex people born with ambiguous sex characteristics to experience gender dysphoria. A 2021 meta analysis found that 15 percent of intersex people born with ambiguous sex characteristics experience gender dysphoria in adolescence or adulthood.[47] Patients with 5-alpha-reductase deficiency and 17-hydroxysteroid dehydrogenase deficiency have the highest prevalence of gender dysphoria, while those with CAH have the lowest prevalence.[47]
Those with intersex variations should have a psychiatrist or psychologist working with a multidisciplinary team.[15] Mental health professionals can aid intersex people when making choices about hormone treatments, gender assignment, gender reassignment, and surgeries.[15] Psychological support for parents and family members helps reduce harm to an intersex child. This support helps by educating family against misconceptions about intersex variations, as well as encouraging parents to share age-appropriate information with their child.[48] This aids in preventing secrecy about the child's intersex status.[48]
Findings suggest peer support for intersex people and their parents can positively contribute to their well being, though robust evidence is lacking.[46][49] Trained facilitators are able to help participants process health information.[49] The added social support mitigates isolation as well.[49] Accessing peer support can prove difficult due to lack of referrals.[49]
Intersex variations can impact cognitive and social functioning. Rates of autism symptoms are higher in intersex people. A survey of European intersex adults finding a 9.1 percent prevalence, compared to 1 percent in the general adult population.[50] This percentage differs depending on the particular intersex variation, with those with Klinefelter syndrome having the highest autism symptom prevalence of the variations measured.[50]
Cognitive differences depend on the particular variation. Females with Turner syndrome are more likely to be diagnosed with attention deficit disorder, can struggle with social competence in both childhood and adulthood, and can have visuospatial deficits that negatively impact math ability.[51][52] Those with Klinefelter syndrome are likely to experience language issues. 70-80 percent of males with KS experience language difficulties at an early age, and impairments in verbal fluency and confrontation naming have been found in adolescents and adults.[53] Reading difficulties are similarly common in children and adults with Klinefelter Syndrome.[53]
A psychologist should be consulted to assess learning difficulties if they are present.[54][10] Academic accommodations, tutoring, or other forms of support may be equipped to help those with cognitive impairments.[52][54] Psychiatric interventions and other supports may be needed throughout one's life to help with difficulties in executive and cognitive functioning.[46]
Intersex and human rights organizations advocate against medically unnecessary genital surgeries on young children.[55][56] Advocates promote patient-centered care rather than procedures to ease parents.[57] Clinician advocates have worked with professional organizations to write position statements in support of deferring non-essential genital surgery until a child is older.[2] Intersex organizations and clinician advocates both promote mental health support of intersex people as a key part of intersex healthcare.[57][2]
Many intersex patients have gone through negative medical experiences including childhood genital surgery, having their medical history hidden from them, pathologization of intersex variations, and genital examinations and photography.[58][59][60] Some treatments and behaviors have been described as medicalized rape.[61] According to the NNID Foundation, an intersex organization in the Netherlands,
"These actions [of medicalized rape and sexual violence] include: grooming behaviour, provoking sexual arousal without consent sometimes even on small children, construction of vagina's on children and teens that require insertion of penis-shaped objects [vaginal dilation], repeated observing and examining genitals far beyond any level needed to provide care, but rather out of personal interest, and producing photographs and video's of intersex genitals without consent and spreading these images without restrictions."[61]
These experiences negatively impact the well-being of intersex people. Vaginal dilation and surgeries early in life cause physical and psychological trauma.[59] Nonconsensual surgeries can contribute to healthcare avoidance and medical distrust among intersex people, causing them to delay receiving preventative or emergency care.[62]
Intersex patients have better outcomes when receiving specialized care.[63] When intersex patients reach adulthood, they can experience difficulty finding specialized care for their variations; this is in part due to a lack of adult specialists with significant training about intersex conditions.[34] A small study in the Journal of General Internal Medicine found that 28 percent of adult intersex participants had difficultly accessing specialist care.[64]
Intersex patients and their families frequently experience a lack of psychological support. Families with intersex children may feel that being recommended a psychologist implies they are not performing their role in the family well.[65] Intersex patients and caretakers may also have negative perceptions about therapy, finding it taboo or unpleasant.[65] Intersex people desiring psychological support may not be offered such services. A study of 110 intersex people found that majority of patients had not been offered psychological counseling, and 27 percent reported not being offered counseling while having an unmet need for it.[64]
Intersex patients experience issues accessing sexual health and affirming doctors. A survey from the U.K.'s Government Equalities Office found that 11 percent of intersex participants reported that it was difficult to access sexual healthcare compared to 5 percent of endosex LGBT participants.[66] In addition, 6 percent of intersex people reported that their general practitioner was unsupportive compared to 2 percent of endosex LGBT people.[66]
It is difficult for elderly intersex people to find providers capable of meeting their needs.[67] They may fear living in retirement communities due to potential intolerance from other residents.[68] Elderly intersex people can feel concerned about home care as well; they may fear abuse because of their intersex variation or surgical changes to their body.[68]
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