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Catherine Minto, MB ChB and Sarah Creighton, MD MRCOG are two gynecologists working out of University College London Hospitals who have made a huge contribution to the empowerment of people with intersex conditions through their research on intersex people's quality of life, in particular how women's experience of their sexualities have been impacted by childhood genital surgeries designed to "cure" intersexuality.
I first came across their names while working at Intersex Society of North America in summer 2001, when Creighton and Minto presented three studies at the North American Society of Pediatric and Adolescent Gynecology annual meeting in Toronto. Their studies, later published in various medical journals, raised serious questions regarding the safety and effectiveness of intersex "corrective" surgeries.
Below is the list of all the published articles by Minto, Creighton and colleagues on the topic that I could find. Thanks doctors, and thanks British CAH and AIS Support Groups for helping with their research!
Objective cosmetic and anatomical outcomes at adolescence of feminising surgery for ambiguous genitalia done in childhood (Lancet 2001; 358:124-25)
Authors: Sarah M Creighton, Catherine L Minto, Stuart J Steele
Abstract:
There are few, if any data on the long-term outcome of feminising
genital surgery for children with ambiguous genitalia. We present
a retrospective study of cosmetic and anatomical outcomes in 44
adolescent patients who had ambiguous genitalia in childhood
and underwent feminising genital surgery. Cosmetic result was
judged as poor in 18 (41%) of these patients. 43 (98%) of 44
needed further treatment to the genitalia for cosmesis, tampon
use, or intercourse. 23 (89%) of 26 of genitoplasties planned as
one-stage procedures required further major surgery. This
information must be available to parents and clinicians planning
such surgery. Cosmetic genital surgery in infancy needs to be
reassessed in the light of these results.
Editorial: Surgery for Intersex (Journal of the Royal Society of Medicine 2001; 94:218-220)
Authors: Sarah M Creighton
Conclusion:
The main goal for clinicians working with intersex patients is to facilitate successful psychosocial adjustment. Until lately, genital surgery has been seen as the mainstay of treatment but recent evidence suggests that this is not so. Adult patients are unhappy and feel mutilated and damaged by surgery performed on them as young children, however worthy the clinician's motives...
Long term sexual function in intersex conditions with ambiguous genitalia (Journal of Pediatric & Adolescent Gynecology 2001; 14:141-142)
Authors: Sarah M Creighton, Catherine L Minto, Christopher Woodhouse
Conclusion:
This study shows that clitoral surgery can damage adult sexual function.
Cosmetic and anatomical outcomes following feminising childhood surgery for intersex conditions (Journal of Pediatric & Adolescent Gynecology 2001; 14:142)
Authors: Sarah M Creighton, Catherine L Minto, Stuart J Steele
Conclusion:
Most children undergoing feminizing 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.
Sexual function in adult women with complete androgen insensitivity syndrome (Journal of Pediatric & Adolescent Gynecology 2001; 14:144-145)
Authors: Sarah M Creighton, Catherine L Minto
Conclusion:
Sexual dysfunction is common in CAIS, most significantly in the areas of difficulty with vaginal penetration, infrequency and non-communication.
Managing intersex: Most vaginal surgery in childhood should be deferred (BMJ 2001; 323:1264-1265)
Authors: Sarah M Creighton, Catherine Minto
Conclusion:
We need to rethink our approach to the management of intersex
conditions. We must abandon policies of non-disclosure and manage
patients within a multidisciplinary team. Long term follow up studies
of adults with intersex conditions are crucial. However, such studies
can be done only with the equal involvement of people with these
conditions and of peer support groups and the cooperation of all
clinicians managing intersex. It is time to create a major intersex
research partnership to begin tackling these questions and move
forwards towards enlightened and patient empowered care.
Medical photography: ethics, consent and the intersex patient (BJU International 2002; 89:67-72)
Authors: Sarah M Creighton, J. Anderson, S. Brown, Catherine Minto
Conclusion:
Obtaining images of patients without fully informed consent is unethical and may have serious consequences. All clinical images should be taken after full consent has been obtained and should be maintained in a secure regulated environment to protect patient confidentiality. Whilst intersex patients have specific and unique needs, the principles of minimizing psychological distress from clinical photography apply equally to all patients regardless of their condition. In intersex patients, undergoing clinical photography causes unnecessary distress and suffering. It can compromise the relationship between patient and doctor and can lead to long-term psychological trauma. Careful consideration should be given to every image request before fully informed consent is obtained, and to minimize the psychological distress all images, where possible, should be obtained whilst under anaesthetic for surgical treatment or investigation. Full-body views of naked intersex patients contravene all the duties of care of doctors, and should neither be taken nor used for education or publication.
The effect of clitoral surgery on sexual outcome in individuals who have intersex conditions with ambiguous genitalia: a cross-sectional study (Lancet 2003; 361:1252-1257)
Authors: Catherine L Minto, Lih-Mei Liao, Christopher RJ Woodhouse, Phillip G Ransley, Sarah M Creighton
Conclusion:
Sexual function could be compromised by clitoral surgery. Debate on the ethics of the use of this
surgery in children should be promoted and further multicentre research is needed to ensure representative samples and comprehensive outcome assessment. Meanwhile, parents and patients who consent to clitoral surgery should be fully informed of the potential risks to sexual function.
Regarding the Consensus Statement on 21-Hydroxylase Deficiency from the Lawson Wilkins Pediatric Endocrine Society and The European Society for Paediatric Endocrinology (Journal of Clinical Endocrinology & Metabolism 2003; 88:3455)
Authors: Sarah Creighton, Philip Ransley, Patrick Duffy, Duncan Wilcox,
Imran Mushtaq, Peter Cuckow, Christopher Woodhouse,
Catherine Minto, Naomi Crouch, Richard Stanhope, Ieuan
Hughes, Mehul Dattani, Peter Hindmarsh, Caroline Brain,
John Achermann, Gerard Conway, Lih Mei Liao, Angela
Barnicoat, and Les Perry
Excerpt:
The surgical management of ambiguous genitalia is controversial
because few long-term follow-up data are available on the effects of
surgery on sexual function and psychological outcome. There is increasing
concern from intersex consumer groups about possible detrimental
effects of genital surgery. Adult patients and parents of affected children
should have a central role in this debate...
The only consensus attainable at the present time is that of a dedicated
multidisciplinary team addressing an individual case including full
participation of the affected family who will be responsible for the
nurture of the child in the modern world.
Sexual function in women with complete androgen insensitivity syndrome (Fertility and Sterility 2003; 80 157-164)
Authors: Catherine L Minto, Lih-Mei Liao, Gerald S Conway, Sarah M Creighton
Conclusion:
Androgen deficiency leads to sexual problems. Vaginal hypoplasia and
negative psychological adaptation to living with an intersex condition
are likely to have contributed to the high rates of sexual problems
found in this study. Treatments for vaginal hypoplasia need to be
evaluated with outcome studies of long-term sexual function, quality
of life, and satisfaction. Clinical services for the management of
intersex conditions need to be multidisciplinary and aim to optimize
the patient's physical and psychological health.
Genital sensation after feminizing genitoplasty for congenital adrenal hyperplasia: a pilot study (BJU International 2004; 93:135-138)
Authors:Naomi S Crouch, Catherine L Minto, Lih-Mei Liao, Christopher R J Woodhouse, Sarah M Creighton
Conclusion:
The sensory data for all six women were outside the normal range for the clitoris. The result for the upper vagina, which had not had surgery, were within normal ranges. These findings suggest that genital surgery may disrupt sensory input. Sexual function also appears to be impaired and this may relate to the compromised sensitivity and restricted introitus. The possibility that women with CAH have deficient clitoral sensation ab initio cannot be excluded. These striking findings must be evaluated further in the light of the controversy about the issue of genital surgery in children with CAH.