Uitsluiting - Beeld: Tero Vesalainen

Beeld: Tero Vesalainen

Sociale gevolgen

Om diverse redenen geeft medisch-wetenschappelijk onderzoek een beperkt en vertekend beeld van de negatieve sociale1Het ligt voor de hand dat negatieve sociale gevolgen als gevolg van maatschappelijke uitsluiting resulteren in negatieve economische gevolgen. Over de economische gevolgen is jammer genoeg nog minder bekend dan over de sociale gevolgen. gevolgen van het niet-accepteren van seksediversiteit door de maatschappij. Er is bovendien weinig onderzoek verricht naar de gevolgen van het persoonlijk trauma. Maar de gegevens die beschikbaar zijn uit recent onderzoek zijn verontrustend. Voor een deel kunnen gezondheidswerkers de problematiek constateren, maar het behoort niet tot hun taak de maatschappij te veranderen. Zelfs als zij dat zouden willen, hebben zij te weinig maatschappelijke invloed om de noodzakelijke verandering te realiseren. En zelfs als ze het zouden kunnen, is hun betrokkenheid bij het ontstaan en het in stand houden van de problematiek reden om gepast afstand te houden2Voor veel gezondheidswerkers is het moeilijk te accepteren dat zij op zijn minst betrokken zijn bij het ontstaan en in stand houden van problemen die intersekse mensen ondervinden in de maatschappij. Hoewel er tal van publicaties zijn die hierop wijzen en intersekse activisten zich steeds luider laten horen, wordt de visie van intersekse mensen die het niet eens zijn met de behandeling nog steeds bewust of onbewust onjuist weergegeven. Dat is bijvoorbeeld het geval in de reactie van Cools et al. op het rapport van de Europese commissaris voor de mensenrechten(Cools 2016) en een prioriteitenoverzicht van Meyer-Bahlburg(Meyer-Bahlburg 2017)..

Nederland

In Nederland is door het Sociaal en Cultureel Planbureau verkennend onderzoek gedaan – ook daarin wordt geconcludeerd:

  • dat intersekse/DSD niet alleen lichamelijke gevolgen heeft,
  • dat intersekse mensen afwegen tegenover wie ze open zijn,
  • dat zij zich aanpassen of situaties vermijden zodat hun conditie onzichtbaar blijft,
  • dat intersekse/DSD relatievorming, het zelfbeeld als partner of het vormgeven aan een kinderwens kan bemoeilijken,
  • dat er sprake is van schaamte en angst voor ongewenste reacties,
  • dat die reacties vooral voortkomen uit onwetendheid, ongemak en onbegrip,
  • dat de meeste geïnterviewde mensen met intersekse/DSD dit personen in hun sociale omgeving vrijwel niet kwalijk nemen,
  • dat ze ongewenste reacties in hun eigen omgeving nauwelijks lijken te associëren met non-acceptatie of discriminatie(Van Lisdonk 2014).

Dat beeld komt overeen met de resultaten van het onderzoek dat Margriet van Heesch heeft uitgevoerd. In dat onderzoek vertelden 42 intersekse personen in interviews van twee tot zes uur hun levensnarratieven. Het vertellen ervan bleek een urgentie te hebben in hun leven. Sommigen hadden hun verhaal nog niet eerder aan iemand buiten de medische beroepsgroep durven vertellen – Van Heesch beschrijft een situatie van ‘secret stardom’ waarbij de patiënt door gezondheidswerkers wordt behandeld als iemand die heel speciaal is en door artsen bijzonder gewaardeerd wordt, maar die door de geheimhouding niet dezelfde waardering ziet in de maatschappij. Toch wilden de geïnterviewde intersekse mensen dat hun ervaringen niet verloren zouden gaan omdat ze hoopten dat anderen ervan zouden kunnen leren; zij wensten dat het vertellen van hun verhaal het taboe en het stigma op hun geslachtsvariatie zou ombuigen naar meer openheid en minder schaamte.(Van Heesch 2015)

In de aanbevelingen voor de toekomst schrijft Van Heesch:

Ik hoop dat de zes discoursen die het stigma en het taboe rondom geslachtsvariaties beïnvloedden, uitgedaagd zullen worden. Te noemen: binaire genderopposities, voortplantingsimperatief, heteronormativiteit, homofobie, coïtale imperatief en de geneesbaarheid van interseksualiteit.(Van Heesch 2015)

Van Heesch slaat hiermee de spijker op de kop omdat deze zes discoursen voor een belangrijk deel de grondslag vormen voor de medische behandeling van niet-medische problemen. Dit is dan ook precies wat NNID in nieuwe kwaliteitsstandaard voor DSD wil terugzien: de erkenning dat een aanmerkelijk deel van de nu nog verstrekte ‘medische’ zorg voor intersekse/DSD niet tot de taak van gezondheidswerkers behoort.

Hoewel het onderzoek van Van Heesch daar wel enig inzicht in geeft, is het niet duidelijk wat de gevolgen zijn van de zes discoursen die Van Heesch noemt. Daarvoor is meer onderzoek in Nederland noodzakelijk. Zolang dat onderzoek niet is uitgevoerd, kan worden gekeken naar onderzoeksresultaten uit Australië en Europa.

Australië

Grafiek met de opleidingsnivo's van intersekse personen zoals dit naar voren komt in het onderzoek van Jones et al. 2016


Data: Jones et al. 2016

Onderzoek naar de ervaringen van intersekse mensen in Australië(Jones 2016) toonde o.a. aan dat 18% van de deelnemers aan het onderzoek alleen de lagere school heeft bezocht (tegen 2 procent voor de rest van de bevolking). Dat percentage is ook hoger dan het aantal transgender personen in Australië dat de middelbare school niet heeft afgemaakt.

De onderzoekers zeggen hierover:

Gezien het feit dat Australische jongeren wettelijk verplicht zijn om tot 15-17 jaar op school te blijven (afhankelijk van de wetten van de staat en het gebied), suggereerde deze verstoring van het onderwijs dat er problemen zijn geweest voor mensen met intersekse variaties, hetzij in de schoolcontext zelf, hetzij in relatie tot hun algemene ervaringen op schoolleeftijd, op een manier die het succes van het onderwijs beïnvloedde en betekende dat ze de school verlieten zonder daar voor hen bereikbare kwalificaties, die in de huidige tijd steeds noodzakelijker worden voor het vinden van werk.3Originele tekst: Given that by law Australian young people are required to stay in schools until 15-17 years of age (depending on state and territory laws), this educational disruption suggested that there have been difficulties for people with intersex variations either in school contexts themselves, and/or in relation to their general experiences at schooling age, in ways which affected schooling success and meant they dropped out of/left schools without being able to take advantage of the full qualifications available to them there, and increasingly necessary for opening up job opportunities in modern times. Opvallend is dat intersekse personen bij het hoger onderwijs juist beter dan gemiddeld presteren.

Inkomen van intersekse personen in vergelijking met de rest van de bevolking in Australië zoals dit naar voren komt in het het onderzoek van Jones et al. 2016

Data: Jones et al. 2016

Ook het inkomen van intersekse mensen blijft sterk achter bij het gemiddelde. Terwijl het gemiddelde inkomen in Australië ruim 80.000 Australische dollars per jaar bedroeg, verdiende 63 procent van de deelnemers aan het onderzoek minder dan A$ 41.000, en 41 procent zelfs minder dan A$ 20.000.

Het percentage werkzoekenden lag met 12 procent hoger dan het gemiddelde voor de Australische bevolking, en tussen de percentages van 9 tot 15 procent die genoemd worden voor de werkzoekende transgender personen.

Hoewel de medische behandeling van seksediversiteit in Australië niet wezenlijk afwijkt van die in Nederland, is het mogelijk dat door de grotere afstand van inwoners tot gespecialiseerde medische centra de ervaringen van de deelnemers aan het onderzoek sterk verschillen van de ervaringen van intersekse mensen in Europa. Om die reden verdient het aanbeveling een soortgelijk onderzoek, waarbij de deelnemers niet noodzakelijkerwijs uit een gemedicaliseerde omgeving komen, ook in Europa uit te voeren.

aanbevolen boeken aanbevolen boeken  aanbevolen boeken aanbevolen boeken  aanbevolen boeken aanbevolen boeken

In dit Engelstalige boek is auteur Georgiann Davis in de eerste plaats wetenschapper en daarna pas intersekse persoon. Haar ervaringen als intersekse persoon zijn door het hele boek voelbaar, maar staan de wetenschappelijke benadering van het onderwerp geen moment in de weg. Contesting Intersex schetst een breed, en vaak onthutsend, beeld van een sociale beweging die zich probeert te ontworstelen aan een door de maatschappij opgelegde medicalisering. Daarbij komen zowel intersekse mensen als gezondheidswerkers aan het woord.

Georgiann Davis
Contesting Intersex: the Dubious Diagnosis
New York University Press
ISBN 9781479887040

Voor haar proefschrift interviewde Margriet van Hees tientallen intersekse personen. Door het herschikken en interfereren van de kennis uit hun levensverhalen met de kennis uit medische narratieven is een meervoudig perspectief ontstaan. Dit onderzoek draagt bij aan het beschouwen van intersekse mensen als volwaardig; met volwaardige lichamen, volwaardige levens en een volwaardige seksualiteit.

Margriet van Heesch
Ze wisten niet of ik een jongen of een meisje was: kennis, keuze en geslachtsvariaties
Vossiuspers UvA.
ISBN 9789056297640 

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Europa

Recent onderzoek in Europa onder intersekse mensen die bekend zijn bij DSD-behandelcentra, toont aan dat in vergelijking met de controlegroep 3,8 maal zoveel deelnemers aan het onderzoek een zelfmoordpoging hebben ondernomen. Omdat een belangrijke groep deelnemers geen antwoord op de betreffende vraag heeft gegeven, vermoeden de onderzoekers dat het werkelijke percentage nog hoger ligt. Het aantal intersekse personen met psychische klachten is in dit onderzoek 4,3 maal zo hoog als in de controlegroep.(Falhammar 2018).

Verhouding psychische klachten en zelfmoordpogingen onder deelnemers aan een DSD-onderzoek en de rest van de bevolking.

Data: Falhammar et al. 2018

Het is onbekend of de psychische problemen en het hoge percentage zelfmoordpogingen symptomen van de DSD-diagnoses zijn. Dat deze percentages ook bij seksueel misbruikte kinderen4De WHO definitie voor seksueel misbruik van kinderen luidt: “Child sexual abuse is the involvement of a child in sexual activity that he or she does not fully comprehend, is unable to give informed consent to, or for which the child is not developmentally prepared and cannot give consent, or that violates the laws or social taboos of society. Child sexual abuse is evidenced by this activity between a child and an adult or another child who by age or development is in a relationship of responsibility, trust or power, the activity being intended to gratify or satisfy the needs of the other person.”(Wells 2003) sterk verhoogd zijn(Browne 1986, Cook 2005, Fergusson 1996),  dat sommige medische behandelingen en onderzoeken (waaronder een test die beschreven wordt als ‘clitoral sensory testing and vibratory sensory testing’(Yang 2007)) voor intersekse kinderen als seksueel misbruik kunnen worden geclassificeerd(Alexander 1997, Dreger 2015, Jones 2016, Knight 2017, Wiesemann 2010), dat wetenschappers en instanties de medische behandeling die een groep intersekse kinderen ondergaat vergelijkbaar acht met Vrouwelijke Genitale Verminking5De VN-definitie voor Vrouwelijke Genitale Verminking luidt: “The term ‘female genital mutilation’ (also called ‘female genital cutting’ and ‘female genital mutilation/cutting’) refers to all procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons.”(WHO 2008). (VGV) (Dreger 1998, Earp 2018, Ehrenreich 2005, Fraser 2016, GFMK 2014, Green 2005, OHCHR 2015, Pūras 2016) en dat een groeiend aantal intersekse mensen zegt de medische aandacht als (seksueel) misbruik te hebben ervaren(Blair 2015, Frader 2015, Meoded Danon 2018, Monro 2017, Viloria 2017), doet vermoeden dat de medische aandacht de oorzaak is en niet de diagnose.

Meer sociale gevolgen

Vaak wordt aangenomen dat weinig of geen data beschikbaar zijn over de sociale gevolgen van intersekse. Maar in wetenschappelijke publicaties wordt dergelijke informatie regelmatig gepubliceerd. Jammer genoeg spelen de sociale gevolgen zelden een hoofdrol in het onderzoek; de resultaten worden vaak verzameld als onderdeel van breder medisch onderzoek.

De publicaties gaan meestal niet in op mogelijke oorzaken. Echter, er is geen wetenschappelijk bewijs dat schooluitval, het niet kunnen vinden van een partner, en suïcide-gedachten, symptomen zijn van seksediversiteit. Sociale uitsluiting is de meest voor de hand liggende oorzaak.

1988 Nielsen et al.
Klinefelter Syndrome(N=30)

15 of the 30 participants fall in the category ‘unskilled labourer’, four are labeled as ‘disablement pensioner’.

  • 6 Skilled labourer
  • 15 Unskilled labourer
  • 5 Apprentice/student
  • 4 Disablement pensioner

Nielsen J, Pelsen B, Sørensen K. Follow-up of 30 Klinefelter males treated with testosterone. Clinical Genetics. 1988;33(4):262-269. https://doi.org/10.1111/j.1399-0004.1988.tb03447.x.

2006 Carel et al.
Turner Syndrome (N=566)

  • 203 younger than 20 years(36%)
  • 144 did not graduate from high school (25%)
  • 219 high-school graduation and higher (39%)
  • 39 percent of the group > 20yr. Dropped-out from highschool (average for the US is about 10%).
  • Lifetime sexual experience
    • Intercourse experience and living with male partner 42 (8%)
    • Intercourse experience 172 (30%)
    • Kissing or dating experience 165 (29%)
    • No experience 187 (33%)
  • Sexual experience at 20 yr
    • Not evaluable 80 (14%)
    • No 354 (63%)
    • Yes 132 (23%)

Carel J-C, Elie C, Ecosse E, Tauber M, Léger J, Cabrol S, et al. Self-esteem and social adjustment in young women with Turner syndrome—influence of pubertal management and sexuality: population-based cohort study. Journal of Clinical Endocrinology & Metabolism. 2006;91(8):2972-2979. https://doi.org/10.1210/jc.2005-2652

2006 Johannsen et al.
Women with DSD (N=70), with CAIS (n=11), Virilized females (n=16). CAH (n=40), GD (n=3)

  • Overall, present relationships were significantly less frequent in patients (n=41) than in controls (n=54, P=0.02)”
  • “A tendency towards a higher frequency of counseling due to severe symptoms was found in the patient group as compared with their matched controls (P=0.06)”
  • “Previous suicidal thoughts were reported significantly more frequent in the patient group (n=26) and in the operated controls (n=3), as compared with the healthy controls (n=9), PZ0.002 and 0.05 respectively. Previous suicidal thoughts were distributed unevenly among patients with higher frequencies in the 46,XX- and 46,XY-virilized females (P=0.008) and CAH females (P=0.03), as compared with their controls, while the CAIS and GD females had lower frequencies. The frequency of suicidal thoughts did not differ between patients and operated controls (P=0.67) or between patient subgroups (P=0.11).”
  • “A history of suicidal attempt was reported in 11.6% of the patients and 4.3% of their controls, but in none of the operated controls. Median age at first suicidal attempt was 19.5 years (range 16–34) in the patients and 18.0 years (range 17–19) in the controls. Among patient subgroups, suicidal attempts were primarily seen in the CAH group (P=0.10 as compared with their controls),”
  • “The mean anxiety score was significantly higher in the patients than in the controls (P=0.03) with the largest difference found between CAH females and their controls (P=0.01), while CAIS females had lower scores.”

Johannsen TH, Ripa CP, Mortensen EL, Main KM. Quality of life in 70 women with disorders of sex development. European Journal of Endocrinology. 2006;155(6):877-885. https://doi.org/10.1530/eje.1.02294

2007 De Vries at al. (Review)
CAH XX female (n=95), CAH XX Male (n=14), PAIS (n=77), only 12 year and older

Rejecting the assigned gender is seen as a genderidentity issue:

  • CAH 46, XX raised female N=95: “ten showed serious gender identity problems, five made a gender change”
  • CAH 46,XX raised male N=14: “Of them three identified themselves as females or were gender dysphoric.”
  • PAIS 46,XY N=77: “77 PAIS cases identified as 12 years of age or older, (43 assigned female neonatally or physician imposed reassigned female before age 18 months, and 34 assigned male neonatally or physician imposed reassigned male before age 18 months), nine opted to change their gender later in life or developed gender dysphoria. Gender changes were from male to female in five cases and three were from female to male. All gender changes took place in adulthood. One female raised PAIS patient developed gender dysphoria but did not change her gender”.
  • “Total: Of all the female-raised 46,XY subjects with different DSD (n = 260) described in this review, 42,3 % (n = 110) developed gender identity problems in adolescence or adulthood. Of the male-raised 46,XY subjects with different DSD (n = 436) described in this review, only 0.2 % (n = 1) possibly developed gender identity problems. Of the male-raised 46,XX subjects with CAH (n = 14), 21.4% (n = 3) developed problems. Of the female raised 46,XX subjects with CAH (n =217), 4.6 % (n = 10) developed serious gender identity problems.”

de Vries A, Doreleijers T, Cohen-Kettenis P. Disorders of sex development and gender identity outcome in adolescence and adulthood: understanding gender identity development and its clinical implications. Pediatric Endocrinology Reviews. 2007;4(4):343-351. https://www.ncbi.nlm.nih.gov/pubmed/17643082

2008 Schönbucher et al. (Review)
Hypospadias

  • The findings regarding psychosexual development, however, clearly demonstrate that boys with hypospadias suffer from negative genital appraisal and sexual inhibitions.
  • The findings on the significance of medical factors are likewise inconsistent. Overall, they suggest that medical characteristics bear a rather small influence on the psychosocial and psychosexual outcome. It is important to note that there is no empirical evidence that corrective surgery at the youngest possible age leads to a better psychological development. Thus, empirical results do not support the early surgical interventions, which pediatric urologist recommend for (APA, 1996; Zavitsanakis & Gougoudi, 2004).

Schönbucher VB, Weber DM, Landolt MA. Psychosocial adjustment, health-related quality of life, and psychosexual development of boys with hypospadias: a systematic review. Journal of pediatric psychology. 2008;33(5):520-535. https://doi.org/10.1093/jpepsy/jsm098

2009 Schützmann et al.
DSD (N=37): 17ß-HSD (n=2), 5a-RD (n=3), CAIS (n=5), PAIS (n=6), GD (n=10), CAH (n=11)

  • “Our results suggest that adults with DSD are markedly psychologically distressed with rates of suicidal tendencies and self-harming behavior on a level comparable to non-DSD women with a history of physical or sexual abuse, but sample recruitment procedures do not permit a firm generalization.”
  • “Seventeen (46%) participants reported lifetime suicidal thoughts; 5 (29%) of them were born with ambiguous external genitals. However, the impact of presence of ambiguous external genitals at birth was not significant. The presence of suicidal thoughts was independent of age, age at first genital surgery, and age at gonadectomy, but significantly linked to the
    presence of gonadectomy with 23% (N = 3) of persons without gonadectomy and 61% (N = 14) of persons with gonadectomy reporting suicidal thoughts.”

Schützmann K, Brinkmann L, Schacht M, Richter-Appelt H. Psychological distress, self-harming behavior, and suicidal tendencies in adults with disorders of sex development. Archives of sexual behavior. 2009;38(1):16-33. https://doi.org/10.1007/s10508-007-9241-9

2009 Schweizer et al.
46,XY Intersekse/DSD (N=7)

  • All participants reported that they experienced psychological problems and distressing feelings in response to the unexpected virilizing of their bodies during puberty. Anne, Barbara, and Gina explicitly remembered worrying about stability of their gender identity and gender role. Anne had experienced “irritations about my gender role,” Barbara remembered “doubts about my identity as a girl,” and Gina went through “identity problems due to being seen as a man by others.” Claudia wrote that she was unhappy about her male appearance. Fiona reported thoughts of suicide due to the discrepancy between her assigned gender and outer appearance. Anne, Barbara, and Daniela reported problems of social withdrawal. In addition, Daniela described feelings of shame and being “an outsider.” Anne recalled loneliness and helplessness. Anne and Daniela had also experienced increased insecurity. Emily described that she had developed depression and eating disorders during her youth.

Schweizer K, Brunner F, Schützmann K, Schönbucher V, Richter-Appelt H. Gender identity and coping in female 46, XY adults with androgen biosynthesis deficiency (intersexuality/DSD). Journal of Counseling Psychology. 2009;56(1):189-201.

2009 Wisniewski & Mazur (Review)
46,XY DSD

  • Androgen Insensitivity Syndrome, 5α-Reductase-2 Deficiency, and 17β-Hydroxysteroid Dehydrogenase Deficiency
  • “…self-harming behavior, and suicidal tendencies are prevalent in some samples of women with CAIS recruited from physicians or support groups”
  • “Self-reported psychological distress as determined by responses to the BSI, selfharming behavior, suicidal tendencies, and suicidal attempts is observed in people affected by PAIS—whether reared male or female [12–14]. In a long-term followup study of adults with PAIS, psychological counseling for problems such as difficulty with family members, depression, and substance abuse was commonly reported during interviews—once again regardless of male or female rearing[35].”
  • “A study of 15 adults reared male found that none had ever engaged in penile-vaginal intercourse and all experienced severe sexual dysfunction [41].”
  • Medicalization: “It is important to focus on QoL factors for persons with a DSD diagnosis because parents ask questions such as How will my child perform in school? Will my child establish friendships? Will my child have a career? Will my child fall in love? Parents also want to know how their children will feel about their DSD diagnosis. In short, parents want information about their affected child’s future QoL.”
  • More medicalization: “In conditions in which GI/R does not always develop in concordance with sex of rearing—such as PAIS, 5α-RD-2 deficiency, and 17β-HSD-3 deficiency—a better understanding of factors that influence QoL may help to explain the developmental trajectory of GI/R in people for whom GI/R development does not match their initial gender assignment”

Wisniewski AB, Mazur T. 46, XY DSD with Female or Ambiguous External Genitalia at Birth due to Androgen Insensitivity Syndrome, 5-Reductase-2 Deficiency, or 17beta-Hydroxysteroid Dehydrogenase Deficiency: A Review of Quality of Life Outcomes. International journal of pediatric endocrinology. 2009;2009. https://doi.org/10.1155/2009/567430

2011 Bach et al.
MRKH (N=80)

  • Eleven of 80 patients had undergone surgery in the past; six of these 80 women had received dilator training elsewhere, and four were sexually active. Sixty-three of 80 patients had not undergone any previous treatment. Seventeen were having satisfactory sexual intercourse, 16 were having unsatisfactory sexual intercourse, and 26 had never been sexually active; for four women, no information had been recorded. A total of 32 patients underwent vaginal dilator treatment, and 25 completed the therapy.

Bach F, Glanville JM, Balen AH. An observational study of women with müllerian agenesis and their need for vaginal dilator therapy. Fertility and Sterility. 2011;96(2):483-486. https://doi.org/10.1016/j.fertnstert.2011.05.060

2011 Liao et al.
MRKH (N=58)

  • Participants reported better overall physical health and poorer overall mental health compared with normative data. Anxiety levels were higher, especially for women who had undergone vaginal treatment. Sexual wellness and function scores were poor.

Liao L-M, Conway GS, Ismail-Pratt I, Bikoo M, Creighton SM. Emotional and sexual wellness and quality of life in women with Rokitansky syndrome. American Journal of Obstetrics and Gynecology. 2011;205(2):117. e111-117. e116. https://doi.org/10.1016/j.ajog.2011.03.013

2011 Bojesen et al.
Klinefelter Syndroom (N=204)

  • KS is associated with increased morbidity resulting in loss of 2-5 years in lifespan with increased mortality from different diseases and a poor socioeconomic profile.

Bojesen A, Stochholm K, Juul S, Gravholt CH. Socioeconomic trajectories affect mortality in Klinefelter syndrome. Journal of Clinical Endocrinology & Metabolism. 2011;96(7):2098-2104. https://doi.org/10.1210/jc.2011-0367

Chang S, Skakkebæk A, Gravholt CH. Klinefelter Syndrome and medical treatment: hypogonadism and beyond. Hormones (Athens, Greece). 2016. https://doi.org/10.14310/horm.2002.1622

2012 Schönbucher et al.
46, XY DSD (N=47)

  • Compared with the nonclinical group, persons with 46,XY DSD had more often no partner (P = 0.056), felt more insecure in social (MdnDSD = 17.0, Mdncomparison = 12.0, P = 0.001) and sexual situations
  • (MdnDSD = 17.0, Mdncomparison = 11.0, P = 0.006), had more sexual problems (MdnDSD = 4.0, Mdncomparison = 3.0, P = 0.001), and were less satisfied with overall sex life (MdnDSD = 3.0, Mdncomparison = 4.0, P = 0.000) and sexual function (MdnDSD= 4.0, Mdncomparison = 4.0, P = 0.000). Results were inconsistent with regard to sexual-activity history (e.g., previous sexual experience). Participants who underwent genital surgery showed less dyspareunia (P = 0.027) but more fear of injuries during intercourse (P = 0.019) than those whose genitals were left unaltered.
  • SexQoL of persons with 46,XY DSD may be impaired.

Schönbucher V, Schweizer K, Rustige L, Schützmann K, Brunner F, Richter‐Appelt H. Sexual quality of life of individuals with 46, XY disorders of sex development. The journal of sexual medicine. 2012;9(12):3154-3170. https://doi.org/10.1111/j.1743-6109.2009.01639.x

2013 Van Lisdonk
Intersex/DSD (N=7)

  • “Those interviewees who were aware of their condition at a young age all found that their condition had an impact during their school years. Most of them withdrew for a while, were afraid to be open towards others, adapted their behaviour and felt different or lonely. This resulted in a negative experience of school, reduced social interaction with classmates and anxiety about being bullied.”
  • “In chapters 3 and 4 we have shown that intersex/dsd not only has physical consequences, but can also impact on personal experiences and social interaction with others. The interviewees with intersex/dsd do not find it easy to be open towards others about their condition. They often think carefully about who they open up to and what they tell them. They also adapt their behaviour or avoid certain situations so that their condition remains hidden. Intersex/dsd can be problematic for relationship formation, a person’s self-image as a partner or the ability to fulfil the desire to have children.
    There is embarrassment and a fear of negative reactions. Those reactions stem mainly from ignorance, embarrassment and lack of understanding. Most of the persons interviewed with intersex/dsd do not really blame those in their social environment for this and almost none of them seem to associate negative reactions from others with nonacceptance or discrimination. Intersex/dsd can however cause people to feel different, lonely and not understood. This may be related to condition-specific consequences, self-acceptance or actual or expected negative reactions, and the fact that it is not always possible to share concerns among those close to them.”

van Lisdonk J. Living with Intersex/DSD: An exploratory study of the social situation of persons with intersex/dsd. The Hague, the Netherlands: Netherlands Institute for Social Research, 25 August 2014 2014. Rapport Nr. 2014-23 Nr. 978 90 377 0717 5. https://www.scp.nl/Publicaties/Alle_publicaties/Publicaties_2014/Living_with_intersex_DSD

2014 Krupp et al.
CAIS (n=11) and MRKH (n=50)

  • “psychological distress might be an issue for these individuals and therefore should be considered in treatment and counselling”
  • “A correlation between psychological distress and time span from first suspicion to diagnosis was found in women with MRKH”
  • “Suicidal attempts were reported by 2 persons in the CAIS sample and by 4 persons in the MRKHS sample.”

Krupp K, Fliegner M, Brunner F, Brucker S, Rall K, Richter-Appelt H. Quality of life and psychological distress in women with Mayer-Rokitansky-Küster-Hauser syndrome and individuals with complete androgen insensitivity syndrome. Open Journal of Medical Psychology. 2014;3(3):212-221. https://doi.org/10.4236/ojmp.2014.33023

2014 Van Rijn et al.
Klinefelter (n=34) & Trisomy X (n=26)

  • Even though behavioral outcome in children with an extra X chromosome may be variable, there is empirical evidence suggesting that on average children (and adults) with an extra X have an increased vulnerability for social dysfunction.
  • The reported social difficulties in boys and men include shyness, social withdrawal, social anxiety, difficulties in peer-relationships, social impulsivity, communication difficulties, impaired adaptive skills, reduced social assertiveness, emotion regulation problems and difficulties in reading social signals from others such as facial expressions, gaze direction and tone of voice (Bishop et al. 2011; Boone et al. 2001; Geschwind and Dykens 2004; Ratcliffe 1999; Ratcliffe et al. 1991; Robinson et al. 1991; Stewart et al. 1991; Tartaglia et al. 2010a; van’t Wout et al. 2009; van Rijn et al. 2006, 2007, 2008; Visootsak and Graham 2009).
  • […] the extra X group showed more difficulty in cooperating with others, being assertive in social situations, taking social responsibilities, and exerting self control in social situations than their typically developing peers.
  • […] children with an extra X chromosome displayed increased levels of social anxiety compared to typically developing children. This was evident in situations involving social interactions as well as situations in which physical appearance, intellectual abilities or physical abilities were at stake, or in which social desirability played a role.

van Rijn S, Stockmann L, Borghgraef M, Bruining H, van Ravenswaaij-Arts C, Govaerts L, et al. The Social Behavioral Phenotype in Boys and Girls with an Extra X Chromosome (Klinefelter Syndrome and Trisomy X): A Comparison with Autism Spectrum Disorder. Journal of autism and developmental disorders. 2014;44(2):310-320. https://doi.org/10.1007/s10803-013-1860-5

2015 D’Alberton at al.
Women with 46,XY DSD (N=43)

  • “About half of the women with 46,XY DSD (51%) lived with at least one parent, 21% lived alone or with housemates, and 28% had a new family (partner, husband), whereas the figure among Italian females aged 20–60 years was 56% (P = 0.000) (http://dati.istat.it).”
  • “Fourteen individuals were married or living with a partner; four women were separated or widowed, and 22 [women out of 43] had never married nor lived with a partner. This information was missing for four participants.”
  • “Regarding the use of psychiatric drugs, eight individuals did not respond to the question about whether they had had pharmacological therapy, whereas 11 persons declared they had (31.4%), and this percentage is higher than in the general Italian female population between 15 and 65 years (∼12%) (D.R. Potente, Italian Survey 2010–2011, National Council of Research, pers. comm.)”
  • “For the psychological and behavioral aspects analyzed by ABCL, as already reported [24,25], we found that the individuals with 46,XY DSD showed borderline median scores for IS and ES. In agreement with other studies [19,20], they were also more likely to be depressed and anxious, showed more withdrawal and aggressive behavior, and had more thought and attention problems than the women in the comparison group. Assessed together, these data suggest that persons with 46,XY DSD may have higher psychological distress than the general female population.”
  • “[they have] statistically higher scores than the comparison group for depression, anxiety, internalizing and externalizing problems.”

D’Alberton F, Assante MT, Foresti M, Balsamo A, Bertelloni S, Dati E, et al. Quality of Life and Psychological Adjustment of Women Living with 46, XY Differences of Sex Development. The journal of sexual medicine. 2015. https://doi.org/10.1111/jsm.12884

2015 Freriks
Turner Syndrome (N=150)

  • “Twenty-three patients (mean age 38 yr) consulted the psychologist with the following reasons: need for support in accepting TS related limitations in daily life (70%), low self esteem (55%), non assertiveness (45%), lack of social support (25%), and infertility related emotional problems (10%).”
  • “Our study confirms that many TS women experience difficulties in regards to acceptance of limitations related to TS and low self esteem. Remarkably, emotional problems related to infertility were mentioned by only a small minority.”

Freriks K. Turner syndrome in adulthood: a childhood disease grown up [Proefschrift]. Nijmegen: Radboud Universiteit; 2015. http://hdl.handle.net/2066/139500

2015 Fisher et al.
Klinefelter (N=46)

  • In particular, 17.1% of KS obtained just the primary school degree and only 2.4% the university one (vs. 0% and 75%, respectively).
  • Smoking habit was more often reported in KS (KS = 37.0% vs. HC = 11.6%)
  • KS subjects reported higher SCL-90-R Positive Symptom Distress Index (PSDI), and subscale scores as follows: SCL-90 Obsession-Compulsive (O-C), and SCL-90-R Somatization (SOM).
  • KS subjects showed a higher frequency of Axis I Psychiatric Disorders according to DSM-IV criteria (30.4% vs. 7.0%), which was due to a higher prevalence of Mood Disorders.
  • Considering BUT, the KS group showed significantly higher uneasiness related to genitals
  • Considering hypersexuality, the KS group reported significantly higher Sexual Addiction Screening Test (SAST) scores.
  • When paraphilic fantasies and behaviors were assessed, KS subjects showed a higher frequency of voyeuristic fantasies […], during masturbation (52.2% vs. 25.6%).
  • Despite our finding lower levels of TIQ in KS, in line with previous studies [6], 47,XXY individuals were not, on average, intellectually disabled.

Fisher AD, Castellini G, Casale H, Fanni E, Bandini E, Campone B, et al. Hypersexuality, Paraphilic Behaviors, and Gender Dysphoria in Individuals with Klinefelter’s Syndrome. The journal of sexual medicine. 2015;12(12):2413-2424. https://doi.org/10.1111/jsm.13048

2016 Jones et al.
Intersex (N=272)

  • “In 2015, the “Australians born with Congenital Variations in Sex Characteristics (Intersex/DSD/ hormonal, chromosomal or other biological variations/ conditions)” anonymous survey was conducted online, gathering data on 272 people with intersex variations. Participants ranged in age from 16-85+, from all states of Australia in proportion to the broader population, and a fifth lived internationally.Only a quarter of participants rated their overall experience at school positively. The overwhelming majority of participants (92%) did not attend a school with inclusive puberty/sex education. Overall, 18% of people with intersex variations had only had a primary school education – a larger portion than the general Australian population (2%). Many participants (66%) had experienced discrimination ranging from indirect to direct verbal, physical or other discriminatory abuse. Wellbeing risks were high, as documented in the next section.A key finding of this study was that most people with intersex variations had not told school staff about their variation, whilst just over half had told their classmates. Principals were the least likely people in a student’s life to be told about their intersex variation overall; further they were the most likely to be unsupportive.”

Jones T, Hart B, Carpenter M, Ansara G, Leonard W, Lucke J. Intersex: Stories and Statistics from Australia: Open Book Publishers; 2016. ISBN: 978-1-78374-208-0, https://doi.org/10.11647/OBP.0089

UNESCO. From insult to inclusion: Asia-Pacific report on school bullying, violence and discrimination on the basis of sexual orientation and gender identity. United Nations Educational, Scientific and Cultural Organization (UNESCO), 2015. Rapport Nr. TH/DOC/HP2/15/042. http://bangkok.unesco.org/content/insult-inclusion-asia-pacific-report-school-bullying-violence-and-discrimination-basis

2017 Bennecke et al.
DSD (N=110): CAH (n=44), XY females (n=39), XY males (n=10), other (n=9)

  • “In this study, nine participants (8.2%) described themselves as a gender other than male or female. They rated their HRQoL and psychological distress as similar to the rest of the cohort. This observation indicated that identification with a gender outside or overriding male or female dichotomy is not associated with impaired QoL or psychological distress.”
  • “In this study, a considerable difference between psychological and physical well-being was identified in a cohort of 110 adults with various DSD conditions. Participants reported overall higher physical HRQoL, normal mental HRQoL but high psychological distress (42.7%) measured by SF-36 and BSI accordingly.”

Bennecke E, Thyen U, Grüters A, Lux A, Köhler B. Health-related quality of life and psychological well-being in adults with differences/disorders of sex development. Clinical endocrinology. 2017;86(4):634-643. https://doi.org/10.1111/cen.13296

2017 Schweizer et al.
DSD (N=69)

  • The majority received medical treatment in relation to their DSD during childhood and adolescence.
  • Seventy percent reported having had a best friend and 29% a confidant during childhood.
  • Sixty-one percent showed clinically relevant psychological distress,
  • 45% reported suicidal thoughts at least at one point in their lives.
  • Quality of parental care and having had a best friend correlated positively with adult outcome, whereas treatment experiences correlated with aspects of impaired adjustment.

Schweizer K, Brunner F, Gedrose B, Handford C, Richter-Appelt H. Coping With Diverse Sex Development: Treatment Experiences and Psychosocial Support During Childhood and Adolescence and Adult Well-Being. Journal of Pediatric Psychology. 2017;42(5):504-519. https://doi.org/10.1093/jpepsy/jsw058

2018 Falhammar et al.
Turner (n=301), Klinefelter (n=224), XY-DSD (n=222), XX-DSD (excluding congenital adrenal hyperplasia (CAH) and 46,XX males)(n=21), 46,XX-CAH (n=226), and 45,X/46,XY (n=45)

  • Psychiatric disorders were reported in 45.2% (10.6% in controls)
  • Suicide attempt in 6.8% of all individuals with DSD (1.8% in controls)
  • Suicide attempt rates in 5.0% of the DSD women (2.0% on controls) and 10.7% of the DSD men (1.1% in controls).
  • The high rate of suicide attempts is of great concern. Moreover, some individuals (3.9%) preferred not to answer this question which may for some reflect that they had
    made a suicide attempt previously but did not want to disclose this or that they had had suicide thoughts. Suicide and attempts have hardly been studied previously in DSD.
  • In a Swedish registry study females with CAH had a lower suicidal rate than the controls (0.9% vs. 2%)(18), while in males with CAH the rate was higher than in controls (2.8% vs. 1.2%)(24), thus much lower than the 6% found among the individuals with CAH in the present study. Probably this reflects that the current
    study reports on self-reported suicidality while the previous registry studies gave diagnosis rates.

62.7 percent of the 1040 participants experience their own health as good/very good (controls: 76.5%), 28.7% as fair (controls: 17.5%) and 8.6% as bad/very bad (controls: 6.0%). At the same time, 51% experience long-term health problems (controls: 24.5%). 38.6% of the participants say that health problems in the past year have limited their daily lives (controls: 13.8%).

The study shows that a large number of health problems occur much more frequently among the group of intersex persons than among the control group:

  • Obesity (BMI ≥ 30 kg/m2): 17.2% (controls: 14.5%)
  • Type 2 diabetes: 4.1% (controls: 1.7%)
  • Hypertension: 11.0% (controls: 1.8%)
  • Dyslipidaemia: 8.3% (controls 0.4%)
  • Cardiovasculair diseases: 15,3% (controls: 5.0%)
  • Psychiatric diseases: 45.2 (controls: 10.6%)
  • Osteoporosis: 10.7% – women: 9.7%, men: 11.5%
  • Fractures: 12.1% – women: 10.8%, men: 13.8%
  • Gender identity disorders: 11.0% (2% in controls) – women:12,6%, men: 7,7%
  • Autoimmune diseases: 33,9% (1.1% in controles)
  • Joint problems: 10.6% (7,5% in controls)
  • Renal diseases: 4,5% (2.0% in controles)
  • Malignancy: 4.1% (0.7% in controls)
  • Visual issues: 26.2% (1.9% in controls)
  • Hearing issues: 18,2% (1.2%)
  • Neuro disorders: 11.9% (controls 2.1%)
  • Urinary issues: 13.2
  • Any disorder: 84.3%

Many of the health problems mentioned above are diagnosis-dependent. In one diagnosis, the problems will occur much more frequently than mentioned here, while in other diagnoses, the same symptoms may be absent entirely. The article is published as Open Access and contains an elaboration of this information into six subgroups of DSDs.

The authors conclude:

“In conclusion, general health seemed overall good in individuals with DSD. However, many medical problems were reported, especially in KS, with a clear increased risk for both somatic and psychiatric morbidities in individuals who were diagnosed later. Knowledge on the specific health issues that might occur in the different diagnoses should be included in the patient education programs, especially during transition. The DSD expert centers have to tailor follow-up programs according to the needs of the individuals and the different diagnostic groups. Therefore, lifelong follow-up by multidisciplinary teams is necessary.”

Falhammar H, Claahsen-van der Grinten HL, Reisch N, Slowikowska-Hilczer J, Nordenstrom A, Roehle R, et al. Health status in 1040 adults with disorders of sex development (DSD): a European multicenter study. Endocrine Connections. 2018. https://doi.org/10.1530/ec-18-0031

Our position: It is unclear why the researchers conclude that the general health of the persons interviewed can be qualified as good. The data on the various health complaints seem to contradict this conclusion. In addition, many of the reported health problems may have a negative impact on the ability to work. As health is more than the absence of disease, the social consequences of health problems cannot be ignored. The exclusive role that the multidisciplinary teams claim in supervising intersex persons is a denial of the role that society must play in preventing suicide attempts and psychological problems as a result of a DSD diagnosis, and in raising awareness of the fact that intersex can be a reason for discrimination.

We agree with the authors that the percentage of suicide attempts is a serious problem. Although people with such thoughts should be given all the help they need, it is important to recognise that psychosocial support can only combat the symptoms. To prevent new generations from having suicidal thoughts, society needs to change. Doctors in multidisciplinary centres can contribute to this, but they will not be able to change society themselves.

2018 Kreukels et al.
Turner (n=325), Klinefelter (n=219), XY-DSD women with androgen effect (n=107), XY-DSD women without androgen effect (n=63), XY-DSD men (n=87), 46,XX women CAH (n=221)

  • Gender changes were reported by 5% of participants,
  • Only in 1% did the gender change take place after puberty and was likely initiated by the patient.
  • With with Klinefelter and Turner syndromes excluded, genderchange was reported in 12%, (2% after puberty).
  • 39 participants (4%) reported gender variance: between male and female, a gender other than male or female, or gender queer, alternating gender roles,
    or a gender expression that differed from the reported gender. This group had lower self-esteem and more anxiety and depression than the other participants.

Data: Kreukels et al. 2018

Kreukels BPC, Köhler B, Nordenström A, Roehle R, Thyen U, Bouvattier C, et al. Gender Dysphoria and Gender Change in Disorders of Sex Development/Intersex Conditions: Results From the dsd-LIFE Study. The Journal of Sexual Medicine. 2018;15(5):777-85. https://doi.org/10.1016/j.jsxm.2018.02.021

2018 Khorased et al.
CAH (n=22), 5α-RD-2 (n=20), CAIS (n=19)

  • All participants were female-assigned at birth. Ten patients (16.4%) transitioned to the male gender.
  • Overall, 68% of patients had one or more lifetime Axis I disorders, including 63.6% of the CAH participants, 90% of 5α-RD-2 participants, and 52.6% of the CAIS participants.
  • The most commonly observed were affective disorders (27.9%), gender identity disorder (27.9%), and anxiety (16.4%).
  • This might be due to the fact that patients with DSD conditions are mostly treated medically and their mental health is often superficially addressed in developing countries such as Iran, at least in the past.

Khorashad BS, Aghili Z, Kreukels BPC, Reid AG, Roshan GM, Hiradfar M, et al. Mental Health and Disorders of Sex Development/Intersex Conditions in Iranian Culture: Congenital Adrenal Hyperplasia, 5-α Reductase Deficiency-Type 2, and Complete Androgen Insensitivity Syndrome. Archives of sexual behavior. 2018. https://doi.org/10.1007/s10508-017-1139-6

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