Please find following various papers published on the subject of Androgen Insensitivity Syndrome (AIS) and intersex.

Click on any of the headings to see the full article (where available). Please also see our page on the Management of Infants with Ambiguous Genitalia for more scholarly information.

46,XY Intersex Individuals: Phenotype and Etiologic Classification, Knowledge of Condition, and Satisfaction with Knowledge in Adulthood

Claude J. Migeon, Amy B. Wisniewski, Terry R. Brown, John A. Rock, Heino F.L. Meyer-Bahlburg, John Money, and Gary D. Berkovitz, Pediatrics 2002; 110: e32.

The AISSG Australia was recently asked to review this paper for a television network preparing a documentary on the treatment of children with intersex conditions. Here is a copy of Tony Briffa's letter:

Thank you for contacting the AIS Support Group Australia (AISSGA) for a comment about this study.

The AISSGA is pleased Johns Hopkins is conducting research on the treatment of children with intersex conditions. Unfortunately, follow-up studies and research on a number of important issues for those affected by intersex conditions, such as osteoporosis and hormone replacement therapy, is severely lacking.

While the AISSGA is pleased this study shows that approximately three out of four children with intersex conditions are happy with the gender they were assigned at birth, we support the child's right to physical integrity and are deeply concerned for those children who are not happy with the gender they were assigned - particularly if they have undergone irreversible medical intervention. A failure rate of 25% is not acceptable.

There are also those individuals with intersex conditions that are happy with the gender they were raised, but still grieve for the bodies they were born with.

Doctors need to realise that the genitals of children with intersex conditions are never a medical problem.

The results of the companion study that showed half the participants knew little about their condition demonstrates the importance of full disclosure. It also raises doubts as to their ability to comment on the success of their gender assignment.

The focus on the medical management of children with intersex conditions should be on: obtaining an accurate diagnosis, providing professional counselling, peer support, accurate and timely information, permitting the parents time to reflect on all treatment options available, informing the child in stages about their condition and seeking their consent for any medical intervention when they are old enough to make these important decisions for themselves.

The AISSGA's preferred treatment paradigm is attached to this email. Please feel free to distribute or quote it.

I hope this information has helped. Thanks once again for the opportunity to comment about the study.

Best wishes,

Tony Briffa

Sexual Function in Adult Women with Complete Androgen Insensitivity Syndrome

Dr Catherine L Minto, MB ChB, & Miss Sarah Creighton, MD MRCOG.
University College London Hospitals, Department of Obstetrics and Gynaecology, London WC1E, UK.

BACKGROUND: Women with complete androgen insensitivity syndrome (CAIS) have always been presented as unequivocally feminine women with normal sexual function. However they have both physical and psychological factors that might predispose them to suffer sexual dysfunction, eg: shorter than average vaginas, an inability to respond to androgens and anxieties or concerns about their condition, which could impact on self esteem, body image, sensuality and sexual function.

METHODS: This was a questionnaire study and retrospective hospital notes review, looking at sexual function in XY females with a diagnosis of CAIS. The questionnaire comprised details on diagnosis and treatment and a modified sexual function inventory (GRISS) which provided scores encompassing seven areas of female sexual function. All respondents were invited for a clinical examination and all hospital notes were collected and analysed for details of diagnosis and treatments.

RESULTS: 62 women with a current diagnosis and clinical features compatible with CAIS completed and returned the questionnaire. 21/62 (34%) were examined. 17/62 (27%) were patients and 45/62 (73%) were recruited through the AISSG (Androgen Insensitivity Syndrome Support Group). 6/62 (10%) had never been sexually active, and 2/62 did not complete the sexual function questionnaire, leaving sexual function data on 54 women. Global mean sexual function scores were worse than the population average. Mean scores were worst for infrequent sexual activity, non-communication with partner about sexual activity and difficulty with vaginal penetration.

CONCLUSIONS: Sexual dysfunction is common in CAIS, most significantly in the areas of difficulty with vaginal penetration, infrequency and non-communication.

Long Term Sexual Function in Intersex Conditions with Ambiguous Genitalia

Dr Catherine L Minto, MB ChB, Miss Sarah Creighton, MD
MRCOG & Mr Christopher Woodhouse, FRCS.

University College London Hospitals, Department of Urology and Obstetrics and Gynaecology, London WC1E, UK.

BACKGROUND: Current management for intersex conditions includes clitoral reduction surgery for those patients with ambiguous genitalia who are being raised female. Evaluation of this management is difficult due to the scarcity of long term outcome data looking at sexual function and other outcomes.

METHODS: This was a questionnaire study combined with a retrospective hospital notes review. The questionnaire comprised detail on diagnosis and treatment along with a modified sexual function inventory (GRISS) which provided scores encompassing seven areas of female sexual function. All hospital notes were collected and analysed for diagnosis and surgical detail.

All respondents were invited for clinical examination.

RESULTS: 37 intersex women, over 18 years old, all with ambiguous genitalia at birth or in childhood, completed the questionnaire. 11 were patients, 26 were recruited through the UK AISSG (Androgen Insensitivity Syndrome Support Group). 16/37 (43%) attended for a clinical examination. 10/37 (29%) had had clitoral surgery deferred and so had currently not undergone clitoral surgery, of which 1/10 (10%) had never been sexually active. Of the 27/37 (73%) who had undergone clitoral surgery, 9/27 (33%) had never been sexually active, leaving sexual function data on 18 subjects who had undergone clitoral surgery and 9 subjects who have virilised female genitalia and have not undergone clitoral surgery. Mean global sexual function scores were worse in the group with clitoral surgery. On looking at orgasm scores alone, the group with clitoral surgery had scores significantly abnormal for difficulty with orgasm, with 5/18 (28%) having complete anorgasmia.

CONCLUSIONS: This study shows that clitoral surgery can damage adult sexual function.

Cosmetic and Anatomical Outcomes Following Feminising Childhood Surgery for Intersex Conditions

Miss Sarah Creighton MD MRCOG, Dr Catherine L Minto MB ChB & Mr Stuart J Steele FRCOG & FRCS.

Department of Gynaecology, University College London Hospitals, London WC1E, UK.

BACKGROUND: The immediate aim of feminising genitoplasty in the management of ambiguous genitalia is to make the cosmetic appearance look as female as possible. In the long term the vagina must also be adequate for menstruation and intercourse. There is increasing awareness amongst patients and clinicians that the outcome of this surgery may be unsatisfactory. This study evaluates the cosmetic and anatomical outcome of feminising genital surgery.

METHODS: 45 girls were examined under anaesthetic. All had undergone reconstructive genital surgery in childhood for intersex conditions. The external cosmetic appearance was evaluated and a recommendation made as to further intervention. In all cases previous surgical notes were reviewed.

RESULTS: The age range was 7.5-19.5 years (mean 15 years). The cosmetic result was good or satisfactory in 62% of patients. However, in 98% of patients further intervention was deemed necessary. Of these, 23% required dilators and 77% surgery. 60% had undergone one previous procedure. The rest had two or more prior genital operations and one child had undergone six prior genital procedures. All patients who had undergone prior vaginoplasty required further treatment to the vagina.

CONCLUSION: Most children undergoing feminising surgery require further treatment in puberty and this must be made clear to the parents. Vaginal surgery should be deferred until puberty unless there is a risk of haematocolpos. The requirement for clitoral surgery should be carefully considered on an individual basis.

"The Sexes: New Insights into the X and Y Chromosomes"

The distance between Mars and Venus might be closer than previously thought.

By Bob Beale, The Scientist 15[15]:18, Jul. 23, 2001

Jarring Bodies: Thoughts on the Display of Unusual Anatomies

By Dreger, A. D. 2000. Perspectives in Biology and Medicine. 43 ( 2): 161-172.

As in the 19th century, a given physician's examination and display of a patient is as much about establishing that physician's place within the institutions of medicine as it is about establishing the patient's disease within the nosologies of medicine. Dreger discusses the ways in which intersexed people have been examined and displayed in the 19th and 20th centuries.

Re-membering a queer body

By Morgan Holmes. Published in Undercurrents (May 1994: 11-13) by the Faculty of Environmental Studies, York University, 4700 Keele St., North York, Ontario, Canada, M3J 1P3.

What follows is the text of Morgan’s article followed by some correspondence between an AISSG USA member, Morgan and Cheryl Chase, Director of the Intersex Society of North America (ISNA).

The medical construction of gender: Case management of intersexed infants

Kessler, S. J. 1990. Signs: Journal of Women in Culture and Society. 16 (1): 3-26

"The process and guidelines by which decisions about gender (re)construction are made [in intersex case management] reveal the model for the social construction of gender generally. Moreover, in the face of apparently incontrovertible evidence - infants born with some combination of 'female' and 'male' reproductive and sexual features - physicians hold an incorrigible belief and insistence upon female and males as the only 'natural' options. This paradox highlights and calls into question the idea that female and male are biological givens compelling a culture of two genders."

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