Caring for youngsters.
GIRES takes a deep interest in the medical care offered to gender variant young people. Adult transsexual people often express the wish that they had received treatment at this stage of their lives. However, the treatment offered at this stage in the UK diverges markedly from that offered in Australia, Belgium, Canada, Germany, Norway, The Netherlands and the USA.
Advice from NHS Direct
NHS Direct confirms that there is controversy about the treatment of children. The British practice differs from that in overseas centres. The British Society for Paediatric Endocrinology and Diabetes is reviewing its guidelines.
For more information, go to: www.nhsdirect.nhs.uk/articles/article.aspx?articleId=435§ionId=11
Travel Bursaries
Mermaids and GIRES are jointly offering bursaries to mental health professionals in the UK who wish to consider seriously the establishment of a local service to treat gender variant children and adolescents according to the Dutch protocol. The bursaries will cover travel, as well as accommodation and subsistence during the professional's stay in Amsterdam, where the local clinicians are very willing to share their knowledge with others working in this field. Any professionals in the UK who wish to apply for a bursary should write to GIRES, at the address below, on the headed notepaper of the organisation that employs them, with a description of:
- the possible local service, including the names and disciplines of the proposed members of the multidisciplinary team
- the proposed arrangements to visit Amsterdam, including confirmation of the Dutch clinicians' agreement to make information available about their protocol
- the estimated costs for travel, accommodation and subsistence
Applications should be sent to: GIRES, Melverley, The Warren, Ashtead, Surrey KT21 2SP
The German Position
There have been media articles in Germany, the UK and the USA about Kim, a 14 year old German adolescent, with profound and persistent gender dysphoria (male to female), who is undergoing endocrine intervention to suspend puberty. This appears not to be an isolated case.
When Kim turned 12 and puberty started, there was some anxiety and panic at the prospect of the male puberty process continuing. There were concerns that the lower voice and facial hair growth that come along with male puberty could have been traumatic for her. She was increasingly distressed at becoming like other adult transsexuals, with big hands and deep voices, who she thought looked ridiculous when they dress like women.
In accordance with German law, two independent psychiatrists were consulted on the case; they considered Kim's situation so profound that both recommended that treatment should proceed.
One of those psychiatrists was Dr Bernd Meyenburg, the head of the clinic for children with identity disturbances at Frankfurt University. He has studied transsexualism since the 1970s. He now allows young patients to enter hormone treatment early, before puberty complicates a sex change. "They simply suffer less," he said.
Dr. Achim Wüsthof, the pediatric endocrinologist who oversees Kim's endocrine treatment, is affiliated with the Endokrinologikum Center in Hamburg.
Situation in British Columbia
E-mail from Daniel L. Metzger, MD, FAAP, FRCPC
British Columbia's Children's Hospital
We'd very much like to be listed as a pediatric endocrine centre offering treatment for children with gender dysphoria, we've been involved in this for the past decade. We do indeed offer GnRH agonist therapy for these cases. We've treated about 20 kids or so over the past 10 years. If possible, I would start at the very first hint of puberty (early Tanner 2); unfortunately, many of these kids come to us much later.
Endocrinology & Diabetes Unit
4480 Oak Street, Room K4-213
Vancouver, BC V6H 3V4 CANADA
Phone: (604) 875-2117
FAX: (604) 875-3231
E-mail: dmetzger@cw.bc.ca
Internet: endodiab.bcchildrens.ca
The Toronto Approach
Dr Kenneth Zucker practices at the Child and Adolescent Gender Identity Clinic in Toronto. He has an enormous wealth of experience in treating Gender Identity Disorder in children and adolescents and has published extensively in this field. Over the past 30 years, he has treated about 500 preadolescent gender-variant children. He may have diagnosed more children and adolescents with gender identity disorder (GID) than any other facility in the world.
Dr Zucker's studies indicate that "80 percent grow out of the behavior, but 15 percent to 20 percent continue to be distressed about their gender and may ultimately change their sex."
For instance, in the case of M, an adolescent aged 13 with GID and female phenotype, Dr Zucker was asked "Does M, at age 13, truly know what he will want in 5 or 10 years?" Dr Zucker replied ''Most likely, yes,'' ''The chance that M could change his mind at this point is close to zero. If he has been so consistently boy-identified from an early age and is reasonably psychologically stable, he seems like a possible candidate for puberty-blocking medication. But to find that out, he needs to be evaluated by an expert. And he needs to be seeing a therapist who can help him in talking about all this, planning ahead and in learning how to negotiate disclosure to his romantic partners.''
Dr Zucker was asked: "Does your clinic offer suspension of puberty to adolescents who have been diagnosed with profound GID that is likely to persist?
He replied "Yes and we are doing this routinely now for clients who we feel would benefit from it. For these clients, we also require that they participate in counselling sessions that helps us verify the persistence parameter and also to work on their other psychosocial/psychologic/psychiatric issues (of which our clients tend to have many)".
London and other centres that still insist on full pubertal development before any endocrine intervention may find Dr Zucker's response informative.
Belgian Practice
The following information has been sent by clinicians at the University of Ghent:
From Professor Petra De Sutter:
<< We have started since about a year to accept and treat children according to the Amsterdam protocol and have now about one new child a week (!) demanding to enter our program. So far only a small number are on blockers, but numbers are growing exponentially. >>
From Dr Guy T'Sjoen:
<< The interventions we offer are exactly the same ones as those proposed by Prof. Dr. HA Delemarre-van de Waal and Prof. Dr. PTCohen-Kettenis, Genderteam of the Free University Amsterdam.
Suppression of the endogenous puberty by means of GnRh-analogues in girls with Tanner Breast Stage 2-3 and in boys with Tanner Genital Stage 3 (testicular volume of 6 à 8 ml) is suggested. No specific hormonal values are included in these criteria. Adolescent transsexual persons will be treated from early puberty until the age of 16, followed by - if indicated - cross-sex-steroid treatment together with suppression of the endogenous puberty. At the age of 18, surgical corrections can be optional.
In females, the earliest age was 11.5 and in boys the earliest age was 13. If testicular volume reached 6-8 ml in Genital Stage Two, puberty would be suspended. >>
Post Pubertal M to F Transsexual Adolescents
Comparison of British and Dutch Approaches
GIRES has compared the British and Dutch approaches to offering feminising hormones to adolescents with profound and persistent gender dysphoria who had male phenotype at birth and are at or beyond a late stage of pubertal development.
The British Approach
The Guidelines published by the British Society of Paediatric Endocrinolgy and Diabetes (BSPED) have been withdrawn. They did recommend that an adolescent should be left to experience his/her natural hormone environment until:
a - Development of secondary sexual characteristics is complete
b - Final height has been achieved
c - Peak bone mass has been accrued (ideally)
After development of secondary sexual characteristics is complete, followed by a period of up to 15 months on the blocking medication, the authors of the BSPED Guidelines suggest 5-10 micrograms of ethinylestradiol per day for 6 months. However, their initial prescription is for 5 micrograms per day. The dose is increased to 15 then 20 micrograms over around 18 months. This is intended to mimic normal female puberty even though the adolescents now have fully masculinised bodies. Eventually, the patient might be put on what the clinicians say is an adult dose of 20-30 micrograms per day. They say that this is the normal dose of the oral contraceptive pill. It is not clear that it adequately feminises a fully masculine body.
The Dutch Approach
The adolescents cared for by the Dutch clinicians are mainly first seen before, or at an early stage of, puberty. For those confirmed as experiencing profound gender dysphoria that is highly likely to persist, hormone blocking medication is offered at a testicular volume of 6-8 ml to suspend puberty, thereby relieving immediate stress and providing more time for diagnosis. However, some adolescents are first seen at later stages of puberty or even after pubertal development is complete. These cases too are carefully screened and medication is administered to block endogenous sex hormones before feminising hormones are offered.
The opinion of the Dutch clinicians is that, for adolescents born with male phenotype who have already reached a late stage of pubertal development, 5 mcg ethinylestradiol is very low. For such adolescents, in contrast to the British approach, they do not undertake a slow initiation of puberty, but increase the dose of medication in relation to breast development. They do not use ethinylestradiol but 17 beta estradiol, the natural estrogen. For 17 beta estradiol they progressively increase the dose to 2mg per day which they say is an adult dose and comparable with 30-50 mcg ethinylestradiol. This is higher than the 20-30 mcg offered by the British clinicians.
Monitoring breast development as a guide to dosage, rather than increasing it in pre-determined steps, accords with clinical experience of other conditions. In taking young girls through puberty, if you increase estrogens abruptly, they sometimes get uncomfortable breast development with an abnormal breast profile - characterised by increase in the areola, which gives a curious double hump. Whether the same would happen in an older breast is unclear. Although it is doubtful that quite the same caution would be warranted, careful monitoring seems appropriate.
The Dutch use of 17-beta estradiol seems warranted. The dose of ethinyl estradiol necessary to feminise a transsexual adolescent, who has already completed full male puberty, may even be as high as 100 mcg daily. At such dosage levels there is reported to be a substantially greater thrombotic risk than in using 17-beta estradiol (reference below).
Reference: Venous Thrombosis and Changes of Hemostatic Variables during Cross-Sex Hormone Treatment in Transsexual People: A. W. F. T. Toorians, M. C. L. G. D. Thomassen, S. Zweegman, E. J. P. Magdeleyns, G. Tans, L. J. G. Gooren and J. Rosing; 2003; The Journal of Clinical Endocrinology & Metabolism Vol. 88, No. 12 5723-5729
Announcement by the British Society of Paediatric Endocrinology and Diabetes (BSPED)
BSPED has confirmed that its Executive Committee has removed the opening statement "Specific Endocrinological Guidelines approved by the British Society for Paediatric Endocrinology and Diabetes" from the Guidelines it published in 2004.
BSPED has also removed the Guidelines from the public pages on its website. In their place is the following announcement:
<< Guidelines for the management of Gender Identity Disorder (GID) in Adolescents and Children - These guidelines are currently being renewed and ratified. It is the BSPED view that this condition should only be managed by appropriately experienced multidisciplinary teams. >>
A Commentary on "Guidelines for the Management of Gender Identity Disorder (GID) in Adolescents and Children".
Specific Endocrinological Recommendations approved by the British Society of Paediatric Endocrinology & Diabetes (BSPED)
Transsexual people often regret that they were not treated at the onset of puberty, when they experienced intense stress as their bodies began to develop in conflict with their innate gender identities. During puberty, young transsexual men develop breasts and start to menstruate. Young transsexual women's voices deepen, they grow beards, develop prominent Adam's apples and experience erections. Some of these physical changes result in permanent visible and audible signs of their transsexual histories that disadvantage them throughout their lives.
Guidance published in 1998 by the Royal College of Psychiatrists (RCP) and Standards of Care published in 2001 by the Harry Benjamin International Gender Dysphoria Association (HBIGDA) both permit the administration of hormone blockers to suspend puberty at Tanner Stage Two in adolescents experiencing profound and persistent gender dysphoria. That relieves the adolescent's immediate distress and gives more time for diagnosis before the development of unwanted secondary sex characteristics that are difficult or even impossible to correct. The BSPED document, published in 2005, is materially different from its two predecessors. It states unequivocally that blockers should not be offered until Tanner Stage Four/Five, after all pubertal development has been completed.
The Gender Identity Research and Education Society (GIRES) does not in any way doubt the professional competence and sincerity of the BSPED Committee or the authors of its Guidelines. GIRES intends only to suggest that important factors may have been overlooked or unknown at the time that the Guidelines were published.
The BSPED Guidelines are experimental, as is all current clinical practice in the treatment of gender dysphoric adolescents. They do not contain the high quality of evidence needed to drive a significant change in practice compared to that previously endorsed by the RCP and HBIGDA documents. Moreover, they do not appear to have been subjected to objective ethical scrutiny prior to publication.
Whereas the RCP and HBIGDA documents were prepared by large multidisciplinary teams (respectively 12 and 17 clinicians, all of whom had extensive relevant experience) the BSPED Guidelines were prepared by only three authors, all practising the discipline of paediatric endocrinology, of whom only two work with gender dysphoric adolescents. None of the clinicians in other countries who have relevant, substantial and authoritative expertise, including those involved in the preparation of the RCP and HBIGDA documents, is included in the list of authors. Neither is any mental health professional included, even though the diagnosis of whether a patient is experiencing profound gender dysphoria and the prediction of its likely persistence depend on psychological assessment.
One of the authors was a member of BSPED's Committee. It is not apparent whether that person was properly distanced from the Committee when it undertook what should have been an objective assessment of the merits of the Guidelines.
In respect of the timing of hormone blocking medication, the BSPED approach is based on the belief that innate gender identity may alter between Tanner Stage Two and Tanner Stage Four in response to increased endogenous sex hormones. No evidence is cited to support that hypothesis. In fact, none of the adolescents carefully selected for suspension of puberty by the clinicians at the VU University Medical Centre in Amsterdam has expressed regret or sought to reverse the treatment process. The experience of the two BSPED authors, who are responsible for the care of gender dysphoric adolescents in the UK, is that, in a sample of 23 cases, 20 did not relinquish their declared gender identity despite being required to undergo pubertal development that was consistent with their phenotype rather than their innate gender identity. None of those patients had been psychologically screened prior to being seen by these two clinicians, which might have identified at an early stage the 3 patients who did change their minds.
Dr Simona Giordano, the medical ethicist at the University of Manchester Medical School has prepared a paper on the ethico-legal issues (1). Her conclusions concerning the BSPED Guidelines are as follows:
~ they are clinically, ethically and legally questionable.
~ they are at risk of being incongruent with English legislation and with the ethical principles that such legislation incorporates.
~ it is mistaken to assume that clinicians are in no way responsible for the foreseeable consequences of their inaction (which include self-harm and suicidality in gender dysphoric adolescents who are denied medication to suspend puberty).
Perfectly respectable clinical centres in other countries do offer suspension of puberty to carefully selected gender dysphoric adolescents and their families.
The Netherlands: Information about the Dutch approach to the treatment of adolescents was published by Professor Peggy Cohen-Kettenis and Professor Friedemann Pfafflin: in 2003 (2). Subject to the fulfilment of specified criteria, medication to suspend puberty may be offered at Tanner Stage Two (3).
The Dutch approach is also described in the paper, "Clinical Management of Gender Dysphoria in Adolescents", published in 2006 (4).
The Dutch team is taking great care to conduct its own programme of treatment in a strictly controlled and carefully recorded manner. That enables them to provide valid data for use by other clinicians. However, the Dutch clinicians make no recommendation that other clinicians should only provide this treatment in a research setting. In their article to be published in the European Journal of Endocrinolgy, Professor Henriette Delemarre-van de Waal and Professor Peggy Cohen-Kettenis state that "Treatment outcome in transsexuals is expected to be more favourable when puberty is suppressed than when treatment is started after Tanner Stage Four or Five" (5). They also advise that "the short term data of delaying puberty do not show serious side effects related to growth and bone metabolism. However the long term outcome of this treatment on the various systems (growth, bone, brain development and psychological status) is essential before making conclusions on the safety of the treatment, when started at an early phase of puberty".
The USA: Three eminent American clinicians have made comments on the early suspension of puberty:
1 - Professor Peter Lee, at Penn State College of Medicine, has stated "While the care of adolescent transsexuals is not centralized in the US, suppression of puberty is commonly practiced in multiple centres." He confirms that he does suppress at Tanner Stage Two or Three. His belief that it is warranted is stated in the article he wrote jointly with Dr Christopher P Houk (6).
2 - Dr Walter Meyer III, at the University of Texas Medical Branch, has stated "We have a multidisciplinary team in Galveston and we have been using this approach for over 6 years now."
3 - Dr Norman Spack, at the Children's Hospital Boston" has stated "Until now a couple of patients have obtained analogue from their own primary care MDs after we have screened them psychologically and we are following these patients along with their own physicians." He also says that "Children's Hospital Boston has just assembled an Interdisciplinary Gender Team which I am co-chairing along with Paed Urologist Dr. David Diamond (Endocrinology, Urology, Genetics, Ethics, Psychology, Neonatology, Gynaecology) that will soon see patients jointly and collaborate in evaluation and research on appropriate patients, from DSD (Disorders of Sex Development) to Transgenderism. It was not I but the entire group that insisted that Gender Identity Disorders be included in the clinical program. We are awaiting approval from our Institutional Review Board and the FDA to acquire already-offered free GnRH analogue for clinical use in carefully selected Tanner 2 transgendered teens."
Australia: The Court's permission is required for any physical intervention in the medical treatment of gender dysphoric adolescents. Permission has already been granted for early suspension of puberty in at least one case. Professor Garry Warne, at the Royal Children's Hospital, Parkville, Victoria, has confirmed that he too would apply for the Court's permission to suspend puberty in such a case.
Hence, sufficient evidence exists of the harm caused by refusing to suspend puberty to persuade eminent clinicians that this treatment should be offered. The agreed progress report on the London Symposium of experts in the field, in May 2005, describes the "risk of unwanted acting out and self-harm" (7). The above paper describing the Dutch approach states that "adolescents with gender dysphoria may suffer deeply from fears relating to the physical changes of puberty or, for older adolescents, distress relating to the changes already experienced in puberty." (4). Bernadette Wren's paper, published in 2000, speaks of their "lives being unbearable without physical treatment" (8).
In addition, although anecdotes are not reliable data, there are persuasive reports about individual patients. In a letter to one of the authors of the BSPED Guidelines, her 16 ½-year-old patient, who has undergone the transition from a male to a female gender role but was refused early suspension of puberty, says "The last two and a half years have been horrendous for me, with my body becoming so disgustingly adult male that I cannot bear it. I sometimes feel as if I will go crazy with the sadness and desperateness of it. Now, unfortunately, it is really a case of damage limitation." Dr Anne Thompson, the Consultant Child and Adolescent Psychiatrist (at the Lincolnshire Partnership NHS Trust) has, with this patients' permission, written the following about her: "I have been saddened by my patient's profound distress and despair about her situation. Her anguish about her male body, which has developed increasingly obvious secondary sexual characteristics, has been profound. Every day tasks such as walking to school, choosing what to wear in warm weather and taking part in sport are difficult because my patient hates her male body. In my view, distress about her maleness has significantly affected my patient's emotional health. She is almost always low and hopeless, although she makes great efforts to disguise these feelings. She has made suicide attempts."
In the case of a British 12 year old, Professor Peggy Cohen-Kettenis has provided a second opinion that, according to the Dutch protocol, this adolescent "would be considered eligible for hormone treatment to delay her puberty, as soon as she would have reached pubertal stage II (Tanner stage !!)". Nonetheless, two of the authors of the BSPED Guidelines have refused to suspend this adolescent's puberty. The mother of this adolescent has written "now that she is in the beginning stages of puberty I believe that the Dutch approach to treatment by blocking at Tanner Stage 2 is appropriate for my child. I do not believe that making her endure puberty to give her experience of living in the male body will do anything other than push her into depression and anxiety, culminating in self harm, probably suicide."
A mother in the USA has written the following about hormone blockers: "I can tell you about my son's teen years NOT having them. He went from a bright, inquisitive child to a teenager diagnosed with clinical depression who self mutilated & drank to excess."
Hence, the adolescents currently cared for by two of the authors of the BSPED Guidance provide them with case examples of the immediate distress caused by refusing to suspend puberty. What they appear to lack is any clinical experience of the harmful effects of inappropriate and unwanted secondary sex characteristics in adulthood, when they are no longer involved in their patients' care. These characteristics are either irreversible or require invasive, painful and expensive surgical correction and gravely inhibit effective social functioning. Dr Spack deals with this matter in his published article on transgenderism (9). He is "increasingly convinced that anyone involved in the evaluation and potential therapy of gender dysphoric pre-teens and adolescents needs to have ample familiarity with transgendered post-pubertal adolescents, young adults and adults."
There is concern among the authors of the BSPED Guidelines about the possible loss of fertility if puberty is suspended. However, treatment with hormone blockers is acknowledged to be fully reversible in the RCP Guidance and the HBIGDA Standards of Care. That includes achievement of spermatogenesis in male to female cases and maintenance of viable follicles in female to male cases. As Dr Spack says "Until very recently, the only population of adolescents treated with GnRH analogues (blockers) had been precociously pubertal children who were advanced at the time of initiation of treatment in every pubertal dimension. Our experience with those precocious children is that a normal puberty returns in 6-12 months after the termination of analogue and, while I haven't seen reports of their fertility, their physiologic functioning, menstrual regularity, etc leaves little doubt that it will be normal." Professor dr Petra De Sutter, at Ghent University Hospital, agrees with Dr Spack and adds "probably even suppression of spermatogenesis with androgen-blockers and estrogens will remain reversible for years, if indeed testicular biopsy and ICSI is used, as we do in a couple of hundred ICSI cycles for azoospermic men each year, in our centre alone." Accordingly, issues related to reproduction can remain unresolved until the adolescent is competent to make an informed decision.
The authors of the BSPED Guidelines have also raised the issue of whether an adolescent at Tanner Stage Two is competent to give informed consent. The paper cited above on the Dutch approach (4) states that informed consent is essential for any type of physical intervention. It requires treatment information to be repeatedly given and discussed. Of course, suspension of puberty is fully reversible, which means that the adolescent is not being asked to give irrevocable consent. Therefore, as in cases of precocious puberty, the question of competence does not need to be a major factor. In any case, it is not suggested that suspension of puberty should be offered to any adolescent without parental consent.
Waiting for the results of any comparison between the long-term outcomes of the British and Dutch approaches to administering hormone blockers, before considering any changes to the BSPED Guidelines, risks causing grave and foreseeable psychological harm to all the British adolescents, experiencing profound and persistent gender dysphoria, whose inappropriate and harmful pubertal development has not been prevented.
Consequently, GIRES suggests that the BSPED Guidelines should be subjected urgently to an objective medical and ethical review. Meanwhile, GIRES urges the BSPED Committee to state clearly that no British clinician offering adolescents and their parents the choice of following the perfectly respectable Dutch approach would be exposed to clinical governance risk.
Information Sources
GIRES acknowledges that the authors of the BSPED Guidelines and the other clinicians named above are all trying to ensure that hormone blocking medication is provided responsibly for adolescents who experience profound and persistent gender dysphoria. It is very grateful to them for engaging in the extensive e-mail correspondence to which it has referred in this Commentary. In addition to that correspondence, GIRES has referred to the following documents:
1 - Dr Simona Giordano: "Gender Atypical Organisation in Children and Adolescents: Ethico-Legal Issues and a Proposal for New Guidelines"; International Journal of Children's Rights, issue 15,2 in Spring 2007 (In Press).
2 - Professor Peggy Cohen-Kettenis and Professor Friedemann Pfafflin
"Transgenderism and Intersexuality in Childhood and Adolescence", Sage Publications 2003, pages 131-154.
3 - As in 2 above, page 145
4 - Professor Henriette Delemarre-Van de Waal and Professor Peggy Cohen-Kettenis "Caring for Transgender Adolescents in BC: Suggested Guidelines - Clinical Management of Gender Dysphoria in Adolescents"; Transcend Transgender Support & Education Society and Vancouver Coastal Health's Transgender Health Program; January 2006; available online at: http://www.vch.ca/transhealth/resources/library/tcpdocs/guidelines-adolescent.pdf
5 - Professor Henriette Delemarre-Van de Waal and Professor Peggy Cohen-Kettenis: "Clinical Management of Gender Identity Disorder in Adolescents: A protocol on psychological and paediatric endocrinology aspects"; European Journal of Endocrinology, 2006 (In Press).
6 - Dr Christopher P Houk and Professor Peter A Lee: "The Diagnosis and Care of Transsexual Children and Adolescents: A Paediatric Endocrinologists' Perspective", Journal of Paediatric Endocrinology & Metabolism, Volume 19, No. 2, 2006.
7 - Gender Identity Research and Education Society (GIRES): ""Developing Guidelines for Endocrinological Intervention in the Gender Identity Development Treatment of Adolescents - Progress Report - April 2006".
8 - Bernadette Wren: "Early Physical Intervention for Young People with Atypical Gender Identity Development"; 2000; Journal of Clinical Child Psychology and Psychiatry.
9 - Dr Norman Spack: "Transgenderism"; Lahey Clinic Medical Ethics Journal, Fall-2005. Click here to view this article »
GIRES' Final Report to The Nuffield Foundation
Funding provided by The Nuffield Foundation and other charitable donors has enabled the Gender Identity Research and Education Society (GIRES) to undertake a highly important project. Its purpose is to improve the treatment offered, in the UK and other countries, to adolescents who experience profound and persistent discomfort with the gender role assigned at birth because it clashes with their innate gender identities. Such severe discomfort is rare, affecting about 1 in 4,000 in the adult population. Those that make a permanent transition to a gender role that conforms to their gender identities, who may be termed transsexual people, usually have memories of such discomfort that date back to their early childhood. Gender discomfort may be detected in children aged as young as three or four but its outcome cannot be confidently predicted until puberty. Transsexual people often regret that they were not treated at the onset of puberty, when they experienced intense stress as their bodies began to develop in conflict with their gender identities. During puberty, young transsexual men develop breasts, start to menstruate and sometimes become frustrated by their small stature. Young transsexual women's voices deepen, they grow beards and prominent adam's apples, experience erections and become taller than most other women. Modern medical treatment can safely prevent those unwanted changes.
In the UK, some families who have children and adolescents who experience gender discomfort are referred to the specialised gender identity development service at the Portman Clinic in London. Ten years ago, it was receiving about 15 cases per annum. That number has grown to 60 in more recent years. The reasons for that increase are not known. It is possible that there is a real increase in atypical gender identity development among children generally. Some fear that might be due to environmental pollution, which does appear to affect the development of secondary sex characteristics in other species. In the human population pollution is associated with a significant alteration in the ratio of male to female births. However, the increase in cases may be due to these children and their families now feeling more able to be open about the condition. Certainly, there is greater awareness of the condition and less stigma attached to it, as a result of its being discussed in television programmes. Also, the enactment of legislation that protects transsexual people provides real evidence of society's greater tolerance towards them.
The principal clinicians responsible for the medical care of British adolescents argue that to interrupt or interfere with the normal pubertal process may result in unsatisfactory physical development and significant psychopathology. They do not describe those adverse psychological consequences or compare them with those that arise from the development of unwanted secondary sex characteristics. In transsexual people those pubertal changes: (a) cause intense stress and even suicidal feelings, (b) have to be reversed later by invasive and costly surgical and other procedures and (c) result in adverse long-term quality of life effects. Even so, the British clinicians insist that no such intervention should be initiated until all the pubertal body changes are complete and the adolescent has experienced their full effect. They assert that the adolescents have to accept changes that they consider "foreign" and undesirable.
The treatment protocols applied at the Portman Clinic are at variance with those followed in The Netherlands, Belgium and the USA. The Dutch, Belgian and American clinicians have developed extensive expertise in the psychological assessment of gender variant adolescents. They therefore feel confident enough to offer suspension of puberty shortly after it has commenced, in carefully selected cases, by means of medication that blocks the upsurge in masculinising or feminising hormones that would otherwise occur. This medication is only provided with the fully informed consent of the adolescent and the parents or guardians. By this early stage of puberty, the adolescent has been able to experience the initial effects of naturally produced hormones, which is diagnostically important, but has not yet developed unwanted body characteristics. Thus the adolescent is spared the stress of full puberty and given time to examine thoroughly his or her own sense of gender identity. The clinician can use the period of suspended puberty for further careful diagnosis. If such adolescents are then confirmed as transsexual, hormones, can be offered to masculinise or feminise the body so that it aligns as closely as possible to the confirmed gender identity. During this process, the adolescent's bone density, ratio of leg length to body length and overall height, which all evolve critically during puberty, are carefully monitored and successfully controlled. Surgery is offered in adulthood to complete the alignment of the body.
To resolve these differences in approach, GIRES worked with the leading child and adolescent psychiatrist at the Portman Clinic to recruit a multidisciplinary and multinational Joint Project Team, including family members, to examine the alternatives and establish an agreed protocol for application worldwide. GIRES then arranged for the Team to meet for a two-day Symposium in London in May 2005. The Team's agreed progress report is included herewith and shown on the GIRES website.
Clinicians caring for adolescents who experience atypical gender identity development and are entering puberty can refer to three documents for information on what medical approach would be in the patient's best interest. The first two of these documents are in agreement. The third postulates a contradictory view.
1 - The Guidance published in 1998 by the Royal College of Psychiatrists (RCPsychs) was prepared based on consultation among a multi-disciplinary group of 12 eminent clinicians all of whom had extensive experience of working in this field, including 3 who are members of the Joint Project Team. It states that there can be clinical reasons, in the adolescent's interest, to intervene before they reach a post-pubertal state (access via http://www.symposion.com/ijt/ijtc0402.htm)
2 - The Standards of Care published in 2001 by the Harry Benjamin International Gender Dysphoria Association (HBIGDA) were prepared by a multi-disciplinary group of 17 eminent clinicians (to see these standards, access them via http://www.hbigda.org). All of these clinicians had extensive experience of working in this field, including 2 who had participated in preparing the RCPsychs Guidance and 3 who are members of the Joint Project Team. The HBIGDA Standards state that adolescents who have experienced puberty in their biologic sex at least to Tanner Stage Two may be offered blocking medication. (Note that there are five Stages in the measurement of pubertal development in the Tanner Scale). The HBIGDA Standards are internationally recognised as authoritative. Furthermore, following the 2005 Symposium in London, the standard in respect of blockers has been publicly endorsed by two members of the Joint Project Team who did not participate in the preparation of either the RCPsychs or HBIGDA documents:
~ Peter A. Lee, of the Department of Pediatrics, Penn State College of Medicine, in the article he wrote jointly with Christopher P Hook, M.D. that has been published in the current issue of the Journal of Pediatric Endocrinology & Metabolism, Volume 19, No. 2, 2006. Click here to read this article »
~ Norman P Spack, M.D., of the Children's Hospital, Boston and Harvard Medical School, in his article published in the Lahey Clinic Medical Ethics Journal, Fall Edition 2005 (use link at top of this section).
3 - The Guidelines published in 2005 by the British Society of Paediatric Endocrinology and Diabetes (BSPED) were prepared by three clinicians, only two of whom appear to have experience of working in this field. (http://www.bsped.org.uk/professional/guidelines/docs/BSPEDGIDguidelines.pdf). Both are members of the Joint Project Team. One is a paediatrician. The other is a paediatric endocrinologist, who was also a signatory to the above Guidance published by RCPsychs.. The BSPED Guidelines describe the existing practice of these two specialists. They state that, regarding the administration of puberty delaying medication, no such intervention should be initiated until all the pubertal body changes are complete (following Tanner Stage Four/Five). They do not refer to the contradictory practices described in the RCPsychs and HBIGDA documents and already used successfully in The Netherlands and the USA. Although eligibility for treatment should primarily be based on psychological assessment, there appears to have been no involvement of any psychiatrist or psychologist in preparing the BSPED Guidelines. The hypothesis advanced by the authors of these Guidelines is essentially that, between Tanner Stage Two and Tanner Stage Four, gender identity may develop inconsistently from that which can, according to the Dutch screening protocol, be confidently assessed at the start of this period. There appear to be no data from controlled studies of human subjects that support the BSPED hypothesis. None of the adolescents provided with blockers by the Dutch clinicians has expressed regret. In the UK, even within a group of 23 adolescents who had not been screened at Tanner Stage Two, 20 (87 %) transitioned to live permanently in a gender role different from that assigned at birth. The medical ethicist who is a member of the Joint Project Team has submitted a paper to the International Journal of Children's Rights. The paper contends that (a) the BSPED approach risks being incongruent with English legislation and with the ethical principles that such legislation incorporates and (b) it is mistaken to assume that clinicians are in no way responsible for the foreseeable consequences of their inaction (which include self-harm and suicidality in adolescents who are denied medication to suspend puberty).
The British paediatrician who is one of the authors of the BSPED Guideline, accepts that they are not binding, in the UK or elsewhere in the direct legal sense. Nonetheless, he asserts that "they do guide good practice in Britain and will in practice almost always be respected. Those who do not respect such Guidelines may find themselves at clinical governance risk." Other clinicians may decide that the HBIGDA Standards and Dutch protocol are better suited to the interests of their adolescent patients. This paediatrician would advise them that "they would need to understand that the Dutch protocol is a research protocol, not a protocol for clinical treatment. It is only used to treat young people within a research setting with full evaluation and detailed follow-up within an experienced and multidisciplinary team. Young people in Holland will not be treated outside this research setting. This clearly is not possible for clinicians working alone (e.g. outside an experienced team) and working outside research settings. It would be considered unacceptable practice for such isolated clinicians to use a research protocol outside a research setting - at the very least in Britain, and in most countries probably." Again, it should be noted that the BSPED Guidelines were not prepared by a multidisciplinary team. In any case, it is clear from this paediatrician's assertions that there would be no grounds for professional colleagues to object or view with disfavour any clinician working within an experienced multidisciplinary team who decided to offer suspension of puberty at Tanner Stage Two to carefully screened adolescents, provided that this was in a research setting with full evaluation and follow up.
The difficulties that the BSPED Guidelines create for adolescents experiencing profound and persistent gender discomfort are illustrated by the following extracts from a letter. It was written by a 16 year old to the female paediatric endocrinologist who is a co-author of the Guidelines and had been following them in caring for this patient:
* The last two and a half years have been horrendous for me, with my body becoming so disgustingly adult male that I cannot bear it. Imagine how you would feel if, tomorrow morning, you were to wake up to find yourself in a male body, with a man's voice and a man's face looking back at you from the mirror, with early morning beard and moustache stubble, with no breasts, an adam's apple, large male feet and hands, a body covered in thick, black hair and a penis and testicles.
* Would your brain be screaming out, in protest, that you are female, not male? Living in a male body hurts beyond belief. I sometimes feel as if I will go crazy with the sadness and desperateness of it.
* My body will never, ever be as I would like it to be and now, unfortunately, it is really a case of damage limitation."
Many of transsexual people have experienced similar agonies. That suffering is unnecessary.
The Joint Project Team's consensus view is that a research project should be initiated, ideally involving two or more centres sharing a common assessment protocol (to be developed), that explores the benefits and drawbacks of these two approaches, before evidence based guidelines can be written. The research project would require ethical approval, which should facilitate the willingness of the clinical organisations involved to endorse the local research. The clinics in London, Amsterdam and Boston have embarked on such a collaborative research project.
Even when data gathering gets under way, there is likely to be a five-year wait for the results. There may be an ethical issue in meanwhile refusing to give protection from adverse pubertal development to the British adolescents in the research programme while offering it to those in The Netherlands and the USA. However, the results of any Court action to resolve that issue, even if successful, would be too late to help an adolescent whose puberty has already begun.
Adolescents from the UK and other countries cannot be treated in Holland. Treatment in the USA remains a possibility, but that is an expensive option.
In the light of (a) the information already provided by members of the Joint Project Team, (b) the continuing debate that is taking place between its members and (c) the expected delay in publishing the results of the proposed three-centre research, it will be helpful to other clinicians, gender dysphoric adolescents and family members to know what GIRES perceives to be the Team's majority view of best practice. This entails providing medical care in four phases, as listed below.
1 - Careful initial psychological observation, assessment and support. This includes work with the family and the school to ensure that a supportive environment is provided for children exhibiting cross-gendered behaviour or dress. The difficulty for the clinicians conducting the first stage of treatment, psychological assessment, is in identifying accurately the adolescents for whom the subsequent stages are appropriate. No physical test is available. There is persuasive evidence that the brains of transsexual people are programmed before birth to become sexually differentiated, in small but highly significant ways, incongruently with the rest of the body. GIRES has brought together another team to prepare a paper on this subject, "Atypical Gender Development - A Review", which has been accepted for publication in the International Journal of Transgenderism (currently on view on this website). However, this brain difference is, and is likely to remain, undetectable in living subjects. Hence, clinicians must rely on the child's own account of his or her feelings, information from the parents and psychological tests.
2 - Suspension of Puberty at Tanner Stage Two of Development. The adolescent is diagnosed and thoroughly screened at the onset of puberty. The adolescent's response to the physical changes experienced in early puberty is a significant indicator of how likely it is that profound gender dysphoria will persist ("Transgenderism and Intersexuality in Childood and Adolescence - Making Choices" - Peggy T Cohen-Kettenis and Friedemann Pfafflin - 2003, page 145). Pubertal development beyond Tanner Stage Two may be suspended by means of medication that blocks the production of the natural hormones that would otherwise feminise or masculinise the body and preserves the status quo. This gives the adolescent and the clinician more time in which to assess what is in the adolescent's best interests before the onset of physical changes that would be highly distressing and difficult or even impossible to reverse, for instance the development of breasts and menstruation in people with a male gender identity, and a deep voice and facial and body hair in people with a female gender identity. For adolescents who are first seen by the clinician at a later stage of puberty, the screening process would be equally thorough before puberty suspending medication were offered. In all cases, suspension of puberty is subject to the properly informed consent of the adolescent and also, because family support is necessary to achieving a successful outcome, that of the parents or guardians. In cases of adolescents with male gonads and genitalia, it should be made clear that suspension of pubertal development (a) limits the amount of tissue available for the later creation of a vagina and, consequently, surgical procedures may be required that would not otherwise be necessary and (b) precludes the collection of semen for storage should fertility be desired later on. In all cases, reassurance can be given that, if the diagnosis or the adolescent's intention were to change during this phase, cessation of the medication would result in the resumption of the previous pubertal development, including attainment of normal fertility, without harm to the adolescent.
3 - Hormonal Medication to Masculinise or Feminise the Body in Accordance with the Confirmed Gender Identity: This treatment is monitored and controlled to ensure that bone mass and ratio of leg to body length achieve normal levels. It permits the manipulation of overall height so that it conforms to the normal range for adult males or females. Some of the physical changes induced by this treatment are difficult or even impossible to reverse, including the effects on voice pitch and the growth of facial and body hair following the administration of masculinising hormones and, following feminising hormones, the development of breasts. However, with medical help, normal levels of fertility can be achieved in either case, but only on cessation of the medication in those receiving feminising hormones. Administration of cross-sex hormones to adolescents is subject to their properly informed consent. In the UK, if the adolescent were properly deemed to be competent to give that consent, it might be legally possible to offer cross-sex hormones without the consent of the parent or guardian. If such a course were considered, the adolescent would need to review realistically the probability of being able to lead a successful life without family support. In other countries, there may be a minimum age at which cross-sex hormones may legally be offered with or without the consent of the parent or guardian. In all cases, continued counselling and support should be offered to the adolescents, the parents or guardians and the schools.
4 - Surgery: Surgery is offered to alter the body to conform as nearly as possible to the core gender identity. Many of the procedures, such as removal of the testes or ovaries, are impossible to reverse. Currently, these procedures would irreversibly rule out fertility, although advances in medical technology may, in the long-term, enable the conception of genetically related children. Normally, this phase of treatment will only be offered to those who have attained adulthood and are in an adult gender identity service where treatment is provided in conformity with the HBIGDA Standards of Care.
Pending the outcome of the three-centre research, GIRES will continue to compare the above approach with that offered by the British clinicians. It will promulgate this comparison via its website, at conferences and in publications, at no further charge to the Joint Project. Its paper "Early Medical Treatment for Transsexual People" has been published in the journals of two support groups: The Gender Trust and Gendys (see link above). Other Team members are communicating their own views by similar means.
In summary, we can report that the project has achieved valuable results. It has opened an international debate about best practice in this complex field of medicine. The information it has generated can now be readily accessed and is being continually augmented by new academic papers. We hear that clinicians greatly value the material now available on the GIRES website. All this has been achieved within the budget of £9,800. Nonetheless, it is somewhat disappointing that a consensus has not already been achieved on best practice and that there will be a long wait for the results of the comparative research now under way. Among British families in particular, those who can in any way afford to do so have to consider taking their children to the USA for psychological assessment and puberty suspending medication.
Actual Cases
First Case
A mother and father have prepared separate accounts of the atypical gender identity development that their twelve-year-old child has experienced.
The Mother's Story
I moved from my birthplace in Yorkshire, to the South of England when I was 16 years old. At 20 I met my future husband. I was living in Sussex, working as a salesperson for an office equipment company. He was a leasing salesman. We started going out together about a year later when I was 21 and he was 25. We moved in together after about a year, and bought a house a year later. When I was 24 I fell pregnant, with our first child. I continued to work until around 34 weeks pregnant. The pregnancy was completely normal, with minimal sickness up until 12 weeks. The baby was 11 days overdue when I was taken into hospital to be induced. The baby was delivered by forceps and weighed 8lbs 2oz. The birth was difficult, and I remember being completely exhausted. I had to have quite a lot of stitches. I found the first few days after the birth very hard as I was in a lot of pain, but after that settled down everything became so much easier.
Although the baby was announced to be a boy at birth, I now always refer to her as a female. I breastfed until she was 14 weeks then stopped after repeated bouts of mastitis. The baby thrived and was completely normal in all respects of development. She suffered the normal childhood problems of coughs and colds and ear infections. At 18 months she got an infection in her leg that involved a hospital visit as she had febrile convulsions due to a high temperature, but IV antibiotics cleared that up and she had no further convulsions due to illness after that. I went back to work part-time when the baby was 7 months old, and she was looked after by a childminder in our home. When she was around a year old we moved to live near my husband's family. Until our child was nearly 2 years old there were no indications that she was anything other than a perfectly normal little boy. She had always shown a preference for her older cousin, who is 6 years older than her, but she also played happily with her other cousin, a boy who is 4 years older.
Our child started raiding my wardrobe and wearing my skirts and dresses whenever an opportunity presented itself. She seemed fascinated by my clothes and often wanted to play dress up. I didn't see anything wrong with this and considered her to be exploring. When it came to making a list of toys for Christmas the year that she was 2, she asked for My Little Pony and a Barbie doll. My husband felt this wasn't appropriate, but I insisted that we got a range of toys for girls and boys. She showed no interest in the cars, Lego and the action hero toys she got.
Her new childminder, following our house move, told me that she was gravitating to the girl toys she had at her house and showed no interest in the boy stuff. When she played dressing up she wanted the fairy wings and the ballet shoes. My childminder had a large selection of dressing up gear, and merely thought it was cute that our child preferred the girl stuff. She started nursery when she was 2 and a half, and within the first few weeks the staff told me that she was not interested in the boys' toys or dressing up clothes, but was heading straight for the little black dress and the pinafore as soon as the doors were opened. I suggested that they simply let her get on with it, and they agreed not to say anything to her that would make her feel self-conscious.
Over the next couple of years her preference for girl friends, girl toys and girl clothes became more obvious. My husband found this very difficult to cope with and when our child was nearly 4 years old, and stated to me that he should have been a girl, my husband decided that we had to try and stop this growing obsession. He blamed me for this wanting to be a girl; he said that because I allowed girl toys that I was making our child want to be a girl. My husband told both sides of the family that our child was not allowed any more girl toys, and that nobody was to buy anything feminine or girlie for her birthday or Christmas.
At around this point I also asked my GP if she had ever come across anything like this before. She said that she hadn't, not to this degree, but that she would look into it, and that children often experimented with cross gender role playing, and that I shouldn't worry about this at the moment.
My husband maintained a ban on girl things for around 8 months from just before our child was 4. During this time our second child was born, when our first child was 4 years and 2 months old. Our first child also started school that year. I called a halt to the ban when I realised that far from making our first child want to be a boy, it was making her feel depressed and anxious. She recognised that her father had issues with this, so tried to hide the way she felt from him whilst seeking support from me. I felt this was wrong, and tried to persuade my husband that this was not the way to handle it. Unfortunately, he could not accept our first child's preferences. If he caught her wearing girl clothes he would shout and tell her to get them off and to stop being ridiculous. This was a major bone of contention between us and, if I tried to defend her, I was accused of making her a girl.
Our second child was a healthy 9lb 3oz, and I was only in hospital for one night. Our first child was delighted to have a brother, although she did tell me she wanted a sister. I was very aware of trying to make sure that she didn't feel left out, and although we had some minor problems with jealousy, she was never hostile towards her brother in any way. She was more worried that having a new baby would mean we didn't love her as much. We reassured her, of course.
Our first child started school around a month after her brother was born. She liked school, but gravitated towards the girls for making friends. When she was in reception she decided one day to leave school and walk home as she felt that she wanted to be with me. She managed to get out of the grounds and was returned by an elderly couple that found her walking home. The staff at school told me that she seemed isolated from the other children, and anxious to be accepted. She told a couple of the girls that were closest to her that she wanted to be a girl, which they found odd and therefore called her names. I told the school that this was a longstanding issue, and they supported her as best they could. They didn't understand and, to be perfectly honest, at that point neither did I. I encouraged her to accept that she was a boy, whilst stating that liking girl stuff was fine. However, she said that she was very cross with God for giving her boy bits when she was really a girl. That Christmas, even though she wasn't allowed girl toys, I knew she was fascinated with mermaids, so I wrapped a sheet around her legs in the shape of a tail. She wouldn't move for nearly an hour and a half. She regularly wrapped a towel around her head to simulate having long hair.
Her new brother was a very easy and straightforward baby, and she settled down into school. Her need to be a girl never wavered. Examples of this cropped up several times during her first year at school. When she was invited to a friend's house for tea one time, the mother was very embarrassed when I went to pick her up as she was dressed in a bright pink fairy outfit, complete with wings and wand. I had to reassure the other Mum that this was fine. Our child had begged to be allowed to wear this outfit, and the Mum didn't feel able to refuse.
Our marriage was suffering by this point, not because of our first child, but due to other issues. However, this was all put on hold when I discovered that I was pregnant again. Our first child was 5, and the second wasn't even a year old when we found out I was expecting twins. At one point, when our first child was 6 years old, she asked me if she could have the operation to get rid of her boy bits. She stated that she really needed to be a girl, and that she knew she could get her willy chopped off. I started to research gender dysphoria at this stage, because I had begun to accept that this was not going away. In fact, as time went on, she became more upset at the reality of living in a boy's body whilst she felt like a girl.
It became apparent from early in the pregnancy that there were issues with the babies due to twin-to-twin transfusion. I was monitored carefully for the duration of the pregnancy, and when I was just over 6 months pregnant I went into premature labour. In preparation for the arrival of two babies we had employed a nanny to look after the children so I would have some help at home when they were born. Thankfully, she had already started work so was able to look after our first two children whilst I was in hospital. Although my husband brought the children in to visit I was away from home for over 3 weeks, which they both found extremely difficult. His family helped out during this period, but it didn't alleviate our older children's anxiety.
Both older children became extremely clingy and were afraid to let me out of their sight when I got home. The twins were born at 29 weeks, and were only 2lbs each. One had heart problems and wasn't expected to live. However they both recovered from the effects of such a premature birth and by 7 weeks old they were 4lbs each and I was able to bring them home. Both twins were remarkably settled babies. Our first two children were very protective of their younger brothers, perhaps because they were so small and fragile when they came home. Also, because I had a full time nanny, and I only worked part time, I managed to make time for all my kids. Unfortunately, my marriage didn't fare so well, and we separated in August 2000, when our first child was just 7 years old.
I was isolated from my husband's family as they had to try support him through this period, and money was extremely tight. Eventually I decided that my best way forward was to move back to Yorkshire where I would have the support of my family, and with the equity from the house in the South I would have a better chance of finding a house big enough for my family. My mum lived on her own in a council flat, and she had already offered to look after the kids for me when I was working so that I wouldn't have to pay a childminder.
During this period, before I moved North, I took our first child back to my GP as my husband was adamant that I should not be allowing her any freedom of expression regarding her feelings of wanting to be a girl. When we split I had bought girl clothes for her to wear at home. I told her that, if it made her happy, it made me happy, but I also explained that she may change her mind about wanting to be a girl so we had best keep it indoors for now. She accepted this, and was, frankly, ecstatic at the opportunity to express herself in a safe environment.
I had researched extensively, and asked my GP to refer me to the Portman Clinic in London as I knew they were the experts in dealing with children with gender dysphoria. I was referred to the local Mental Health Team, and met with a pychiatrist who had worked with the consultant child and adolescent psychiatrist from the Portman for 18 months. The local psychiatrist diagnosed our first child with gender dysphoria, and referred her to the Portman Clinic. He also told me that allowing her to dress in girl clothes at home was fine, and that allowing her some freedom was supportive, and would help restore her feelings of self-esteem. He said that she needed to know that I loved her and always would, regardless of her gender. I was in tears by the end of the session, as although I knew that I was doing the best thing, it was heartening to hear it from a professional in view of the disapproval and censure I was enduring from others.
We managed to get to the Portman Clinic for 4 visits before we moved to North. In August 2001 I moved up to Yorkshire. It was a difficult move for all of us. I was leaving behind friends I had made, and our first child was doing the same. The younger boys were more insulated from this as they had not started school or nursery. Our first child started school at primary school in Yorkshire in September 2001. She started with her boy's name and went into school in boy uniform. She was very unhappy. She missed her Dad, she was having to cope with a new environment, and a whole new school. She was also becoming more adamant that she needed to be allowed to be a girl all the time. She was devastated every time she had to have a haircut.
When we moved to Yorkshire I had visited my GP and asked for help and support in dealing with our first child's gender dysphoria. I was referred to the local CAMS team, and met with a psychologist, who was lead caseworker for our child. As this psychologist was not familiar with gender dysphoria she contacted the Portman Clinic for help with managing our child's difficulties.
In the second term at school her teachers called me in to discuss the fact that our fist child was telling the other children that she had a girl brain in a boy body. She sent emails to other children during an IT lesson telling the other kids she was really a girl. The school asked me to stop her doing this. I told them I couldn't, that although she had agreed to be a girl indoors only, this was obviously becoming too much. Over the next year she grew her hair and began to wear more feminine clothes to school. She endured a lot of bullying and teasing, and we went though a period when she had lots of tummy aches and sickness due to anxiety. She was very reliant upon being close to me and feeling safe at home. Eventually things calmed down and, in the last year of junior school, she was settled.
In September 2004, our first child started senior school. She started school looking like a girl in all aspects. The situation quickly became extremely difficult. The word got around that a 'trannie' had started school, and she was subject to teasing, taunts and physical bullying. With help from the Portman Clinic and the local psychologist we tried our best to help our first child deal with this, but she became depressed and isolated, and I pulled her out of school in January 2005 after she took 2 overdoses of paracetomol to escape the situation. During this period I also had an incident were she complained of extreme pain in her testes. I took her to hospital and they kept her in, and eventually did an exploratory op on her left testicle. During the consultation with the surgeon prior to the operation she asked him to remove her male genitals and make her a girl whilst he was there. We discussed at length that this was not possible, and that surgery would not be an option until she was much older.
The operation found no problem with the testes, the pain this has not recurred. Following 3 months of home schooling she agreed to try school again, and over the last 6 months has progressed to the point where she is once more in full time school. One of the things that contributed to her confidence was the fact that she entered into a talent contest for the whole of her year, and came 2nd. She has a lovely singing voice, which she is very proud of.
She has been incredibly brave, and due to persistence and determination she has managed to overcome the hurdles placed in front of her. The school has changed her name to her girl's name on the register, and the teachers address her by female pronouns. She has a group of girlfriends who have known her from junior school and support her, and she has settled back into school. The other children in her year accept her as she is, and the older years appear to have forgotten about her and moved on. There have been a few incidents of name calling or whispering behind her back, but she has been much more confident in dealing with these issues without resorting to running away from school or self harming.
At home, her brothers are now calling her by her female name. There is a normal amount of sibling rivalry between them all, and she often acts as self-imposed boss to the younger children, but this is all completely normal. I take the children down to London once a month to see their Dad, and he comes up on occasion between these visits. He has accepted that our first child is not, and never will be, a typical boy. He has come to terms with the fact that she needs to be a woman, and that to allow her to endure a male puberty would not be in her best interests.
Our first child has never wavered from her conviction that she should be a girl. She accepts that she has a male body, but she hates it. Over the last 8 months she has been suffering from spontaneous erections. She finds these extremely distressing. During these erections she has been scratching the back of her neck as a way of distracting herself from the feeling.
She told me over the summer holidays this year that she wants to cut her penis off as she finds it so disgusting. I explained that, if she still feels this way when she is older, she will need her penis for constructing her female genitalia. She and I have discussed the fact that if she has blockers before she experiences a full male puberty that she will not be able to produce sperm, and therefore have her own children. She is adamant that facing puberty and living with the changes, such as a beard, Adams apple, and losing her voice, would be far worse. She has said there would be no way she could live like that, and is terrified of these changes occurring.
I do not believe that early treatment will mean that she will live a problem and pain free life. However, now that she is in the beginning stages of puberty I believe that the Dutch approach to treatment by blocking at Tanner Stage 2 is appropriate for my child. I do not believe that making her endure puberty to give her experience of living in the male body will do anything other than push her into depression and anxiety, culminating in self harm, probably suicide.
The Father's Story
I recall the birth being very difficult. It was very exhausting for my wife and she had to have a lot of stitches. As I recall, the baby was absolutely fine once delivered. But there was some anxiety over the effort and the later stages of the delivery. But the infant was okay and I was absolutely thrilled to have a bouncing baby boy. I guess that initial feeling is part of why accepting the gender issue was so difficult for me. I think as a parent the first-born has a very special impact.
Well, naturally we all went home within a day or so, and we adjusted and settled into parenthood.
It was probably as soon as my child could display preference that my wife started to see a preference for girlie toys over boy toys. This would have been when visiting friends and families houses. I have one niece who, at the time when our baby was 18 months, was about 6/7 years old and very much a girlie little girl with dolls and cuddly toys and pink everything. Our youngster very much latched on to her and her toys, especially dollies. My wife started to buy Barbies for our child, which I was strongly opposed to. I felt it was a phase and that my wife was pandering to it. I knew my wife had wanted a little girl and felt she was just wrong to allow this behaviour to continue. Obviously in hindsight I can see my stance was wrong.
I found the whole situation very difficult. I hated seeing my son dressing up in girls' clothes and playing with girls' toys and never wanting to play with a ball or anything more masculine based. But mostly it was the dressing up I loathed. And I used to get very angry about it - with both my wife, and with the child who was always getting his mother's clothes out of draws and cupboards and trying to put them on. I wish I had been able to accept then what I have accepted now. Trouble being I was not prepared to accept I had a daughter, and not a son. I didn't appreciate that mother nature could screw up so royally.
I was lucky enough to have very flexible working hours and was able most days to drop off and collect our child from the minders, and later on nursery and school. I recall being very fed up when child was in the dressing up clothes of the childminder's daughters. I was never accepting but got to a point that I just tried to ignore it as best as possible. Bottling up for periods and then losing my rag at some point eventually.
This was a very common theme. When we changed childminders again our child went straight for the daughter's dressing up clothes and even at nursery followed the same pattern. Whenever we went anywhere, our child was the same. It was girlie everything. At both childminders and obviously nursery there were boy influences, boy toys, and games but never did our child take to anything but the girl stuff. Despite what must have been terrible ridicule, this behaviour never wavered.
I think primary school was very difficult. Our child was with a much bigger mix of kids and age range, and whilst most of the classmates accepted things there were one or two who didn't and there was a whole school beyond the classroom as well. Despite all this pressure our child advertised himself as a herself and would not keep it secret. This added to the pressure exerted and a few times it got too much for her. On a couple of occasions she ran away from school, and we are quite lucky I feel that she didn't have an accident or worse. At this point I was still very un-accepting of the situation, and hated the fact she was getting bullied and in my opinion bringing it on herself. I didn't accept that she just couldn't be any different. That she just couldn't fight her natural instinct. I felt very at odds. On one hand I was as against the behaviour as were the kids and people judging her, but on the other hand I felt I was unable to protect her from being bullied. It's a very tough life being different. And this gender issue is probably the most difficult "being different" there is.
On top of all this our child then had to endure the breakdown of our marriage and the subsequent divorce, and the move to another city. I sometimes think it's a wonder she has been able to cope at all. But she does, and with great determination. Having said that she has no choice. She is who she is and has the courage to be herself. And we will do everything we can to help her be comfortable and happy.
Bullying incidents - a very small example of the abuse that our child has endured at school
In class and older boy came to the door and shouted out to the class 'oy, kids, there's a trannie in here isn't there, where is it'. The other children didn't respond, but our child was humiliated and ashamed.
Our child was sat at lunch with a friend and another girl walked up and said to her friend 'what are you doing sitting with that freak?' Her friend told the girl to get lost.
An older girl, Donna, repeatedly called our child a he-she, or freak, including one time directly in front of a teacher who was escorting our child to lessons as the abuse was so constant that she was afraid to be in the corridors alone.
Several boys shouted out to her as she was waiting to go into lesson, asking if she still had a dick, and asking her to get it out.
Our child was walking from pastoral to her lesson and an older boy called her a man beast. He then saw her outside reception about an hour later and spat in her face and called her a freak.
A boy threw an apple core at her and called her a trannie.
A boy from her year repeatedly called her names. Trannie, freak, man beast. This became so bad that the police were called in to warn him he faced a police caution, and, if he continued, possible prosecution.
A boy from her year called her trannie, he stopped after he was warned it would not be tolerated and we were prepared to involve the police.
Walking home from school our child heard a group of boys behind her shouting out 'show us your dick' and 'trannie, get your cock out'. She ignored them and hurried on with her head down, and one of the boys ran up to her and tried to pull her skirt down in front of everyone. She ran away.
At break, our child was walking to her lesson and a crowd of boys were talking outside the entrance. They spotted her and started shouting out for her to 'get your cock out, let me suck it for you' and other comments like that. She turned around and headed away. They followed her until she went into another building in the school.
Boys from her year shouted out to her 'have you still got your dick, trannie, or has it been cut off yet?'
Our child was walking towards the Music block and a boy pushed her from behind whilst saying 'trannie', knocking her into a wall and hurting her arm.
Walking from pastoral to the science block, an older boy (not dressed in uniform) called her a trannie, and kicked her.
Standing outside her classroom, waiting to go into lesson, and a couple of girls barged into her and called her a freak.
A girl constantly harasses our child, calling her names and shouting abuse. After she was called into the school office a couple of times, one of her friends confronted our child about getting her friend into trouble, and said 'I will kick the shit out of you, you f***ing trannie'.
Two boys shouted out 'oy, you f***ing freak' as she walked into the main foyer at school.
This is by no means a full account of the abuse that Jackie has suffered. She has things said to her on an almost daily basis.
Second Case
A 16 1/2 year old individual, who has commenced the transition from a male to a female gender role and only recently been provided with medication to block the production of testosterone, has written separate letters to the two clinicians who have been responsible for her care.
LETTER TO A CONSULTANT PAEDIATRIC ENDOCRINOLOGIST
Thank you for your letter dated 1 February and for the speed with which you responded to my letter of 27 January.
Thank you, also, for clarifying that the effectiveness of the drug (hormone blocker) will be difficult to measure until I have received at least 3 injections.
I do have some further questions, however. I will mark, in bold, which specific (as opposed to rhetorical) questions I would like you to answer, please.
You say that measuring my hormone levels won't help as it's what I'm feeling and what is happening in my body that's important. I am confused by your next statement; you say that hormone replacement therapy cannot commence until my testosterone production is fully suppressed - without measuring hormone levels, how would we know when testosterone suppression is being/has been achieved?
You go on to say that you would normally give a period of around twelve months blocking treatment before adding any oestrogen - why is this, for someone of my age and maturity, when hormone neutrality can be achieved within twelve weeks? Also, is not each person that you see different from another? How can there possibly be a 'one rule fits all' approach in this type of medicine?
The Specific Endocrinological Recommendations, contained in the Guidelines for the management of Gender Identity Disorder in Adolescents and Children (published by the British Society of Paediatric Endocrinology and Diabetes), states that blocking treatment should be kept to a minimum period, with twelve months being the maximum. There doesn't appear to be any hard and fast rule there, except for the recommended maximum period of twelve months.
I am not a young teenager; I am a sixteen year old who is, as a result of my life experience to date, mature for my age. For any other necessary drug treatment (and believe me, this is absolutely and utterly necessary), I am of an age where I could give my informed consent - why is this apparently not the case here?
By the way, just to comment on the Endocrinological Recommendations, I believe that the people who wrote them have very little, or a very misguided, understanding of my condition. I wonder if a Consultant Psychologist/Psychiatrist, specialising in GID, was consulted as part of the process of putting the Recommendations together. I suspect not and so I suggest that these Recommendations should form only a part of the whole treatment guidance, in conjunction with the Harry Benjamin Standards of Care.
The Harry Benjamin guidelines do allow professionals flexibility in the way that they treat people for this condition; perhaps this is because Mr Benjamin understood that every person is different and should be treated as an individual. It seems, though, that, in the case of the Portman Clinic, the Endocrinological Recommendations override the Harry Benjamin guidelines. This cannot be right - surely the necessary endocrinological intervention, to help to alleviate the distress of this condition, should be directed by the mental health professional involved, as per the HB guidelines, and not the endocrinologists? I will be writing to the Consultant Child and Adolescent Psychiatrist who has been handling my case in the near future to try to get some clarification on this very important issue.
I understand, of course, that there are physical risks with any hormonal intervention, but I am asking you to understand that the mental torture and emotional agony, caused by not providing intervention at a suitable time, is for me, far, far worse than the thought that I might not live as long as the average person.
If I could have started on blockers at Tanner Stage Two (this, for me, was at the age of about twelve), which is permitted by the Harry Benjamin guidelines, I would have been able to avoid the worst physical effects of male puberty; as it is, I am going to have to spend years, and a lot of money, trying to get rid of the many physical male attributes that I could have avoided. In fact, in respect of permanent hair removal, I am told that I cannot start on this long and painful process until all puberty processes are completed. So, if the feminising hormones take two years to complete the female puberty that you say is necessary, I still have many years of being covered, from head to toe, with thick, black hair to look forward to.
I have, unfortunately, and as the current Recommendations require, experienced the distressing full effects of male puberty, including all of the secondary characteristics; I actually began my puberty at the age of ten, so I have lived with this profound physical wrongness for over six and a half years. The last two and a half years have been horrendous for me, with my body becoming so disgustingly adult male that I cannot bear it.
Imagine how you would feel if, tomorrow morning, you were to wake up to find yourself in an male body, with a man's voice and a man's face looking back at you from the mirror, with early morning beard and moustache stubble, with no breasts, an adam's apple, large male feet and hands, a body covered in thick, black hair and a penis and testicles.
Please, just take time out to consider how you think that would make you feel. Do you think that it would it be a terrible thing to happen to you? Do you think that you'd feel as if you were going crazy? Would your brain be screaming out, in protest, that you are female, not male? Well, welcome to my world. This terrible thing has happened to me and it is worse than you could ever imagine. I wouldn't wish it on my worst enemy, although, if I'm honest, I would like you, and all professionals who deal with transsexual people, to live in my shoes for a day or two, just so you could understand what living with this horrific condition is really like.
Please listen to me when I tell you that I have no conflicting feelings whatsoever about my gender - I am female. Living in a male body hurts beyond belief. I sometimes feel as if I will go crazy with the sadness and desperateness of it. My body will never, ever be as I would like it to be and now, unfortunately, it is really a case of damage limitation. All I want is to be able to get on with my life as a female; at the moment, I am living in a limbo land - I have a female name and I dress in female clothes, but I have facial and body hair, which makes me feel horrible, I am the wrong shape for the clothes that I wear and I have genitalia which is completely alien and upsetting and which protrudes through my clothes. Female hormones are merely the first step along a long medical road that I must follow.
My school has been great about supporting me and many of the pupils are kind and understanding. Many, though, are ignorant and cruel and they shout out things like, 'Girl with a cock', 'There's the he/she/it'', 'Tranny boy', and other names. On my way to school, people shout similar comments from their cars, because of the way I look. I want this school to be the last place that this happens to me. When I leave school, to go to University, or to get a job, I want to be able to keep my private life private; this is nobody else's business. My being abused and discriminated against can be avoided, or at least curtailed, by my having been on female hormones for 9 months by the time I leave sixth form and by my being able to at least 'look the part'. This does not seem to be too big a thing to ask.
If I could be, I would be on female hormones now - I have not taken the internet route because I want my treatment to be carried out safely and by people who know what they are doing. I am willing to remain on blockers for a total of eight months, if the system says that I must. However, I do not feel that my request to start feminising hormone therapy in September is unreasonable, for the reasons I have stated both in this letter and in my last letter. In fact, I believe that to withhold feminising hormones at the age of seventeen and three months, is, in my particular case, needless and cruel.
When I met with the Child and Adolescent Psychologist on 7th February, I was assured that there is flexibility in the system and that the Portman Clinic does treat each person as an individual. With this in mind, I ask, please, that you and your colleagues remain open-minded and flexible with regard to my treatment and that, rather than looking at my treatment from only one, endocrinological, viewpoint, you take a more holistic approach, as per the Harry Benjamin Standards of Care.
The Child and Adolescent Psychologist said that she would arrange for us to meet at the March clinic, for a progress/monitoring meeting although I haven't heard from her regarding this. Perhaps you could write back to me with a date and time for the meeting and to answer my questions?
I look forward to hearing from you.
With best wishes and kindest regards
LETTER TO A CONSULTANT CHILD AND ADOLESCENT PSYCHIATRIST
I have attached a copy of my letter to the Consultant Paediatric Endocrinologist, for your information.
Since you are a Consultant Psychiatrist, rather than an endocrinologist, I am interested to hear your response to the same questions that I asked in the attached letter, if you wouldn't mind. I have put my specific questions in bold type.
1. I am not a young teenager; I am a sixteen year old who is, as a result of my life experience to date, mature for my age. For any other necessary drug treatment (and believe me, this is absolutely and utterly necessary), I am of an age where I could give my informed consent - why is this apparently not the case here?
2. The Harry Benjamin guidelines do allow professionals flexibility in the way that they treat people for this condition; perhaps this is because Mr Benjamin understood that every person is different and should be treated as an individual. It seems, though, that, in the case of the Portman Clinic, the Endocrinological Recommendations override the Harry Benjamin guidelines. This cannot be right - surely the necessary endocrinological intervention, to help to alleviate the distress of this condition, should be directed by the mental health professional involved, as per the HB guidelines, and not the endocrinologists? Please would you clarify exactly what guidelines the team at the Portman adheres to - surely it cannot be the endocrinological recommendations alone? If it is, how can this possible allow for the flexibility that the Child and Adolescent Psychologist tells me is permitted within the system?
3. My school has been great about supporting me and many of the pupils are kind and understanding. Many, though, are ignorant and cruel and they shout out things like, 'Girl with a cock', 'There's the he/she/it'', 'Tranny boy', and other names. On my way to school, people shout similar comments from their cars, because of the way I look. I want this school to be the last place that this happens to me. When I leave school, to go to University, or to get a job, I want to be able to keep my private life private; this is nobody else's business. My being abused and discriminated against can be avoided, or at least curtailed, by my having been on female hormones for 9 months by the time I leave sixth form and by my being able to at least 'look the part' as far as possible. This does not seem to be too big a thing to ask; if it is, why is it?
4. If I could be, I would be on female hormones now - I have not taken the internet route because I want my treatment to be carried out safely and by people who know what they are doing. I am willing to remain on blockers for a total of eight months, if the system says that I must. However, I do not feel that my request to start feminising hormone therapy in September, when I will have been on the blocker for 8 months, is unreasonable, for the reasons I have stated both in this letter and in my last letter. In fact, I believe that to withhold feminising hormones at the age of seventeen and three months, is, in my particular case, needless and cruel - what is your view on this?
5. When I met with the Child and Adolescent Psychologist on 7th February, I was assured that there is flexibility in the system and that the Portman Clinic does treat each person as an individual. With this in mind, I ask, please, that you and your colleagues remain open-minded and flexible with regard to my treatment and that, rather than looking at my treatment from only one, endocrinological, viewpoint, you take a more holistic approach, as per the Harry Benjamin Standards of Care.
Is what the Child and Adolescent Psychologist says regarding flexibility and treating people as individuals true for all the members of the Portman team treating me?
Are people really given treatment that is tailored to their individual needs or, as it appears to me, do the endocrinologists actually dictate what treatment can be given and when?
If the latter is the case, how can this possibly be right and how can you, in the light of the revised Harry Benjamin Standards of Care, permit it to happen?
I am honestly not trying to be a pain in the neck or to cause trouble or upset; I am just trying to understand what is going on and why my pleadings to be heard seem to be falling on deaf ears.
Thank you for listening to me and I look forward to hearing from you soon.
Yours sincerely
Developing Guidelines for Endocrinological Intervention in the Gender Identity Development Treatment of Adolescents
Progress Report - April 2006
=================
The aim of this project is to develop an expert consensus among the clinicians engaged in the treatment of adolescents experiencing gender variance. This should lead to improved guidelines for endocrine intervention in this patient group. Currently there are no agreed guidelines being applied consistently amongst paediatric and adolescent endocrinologists in this complex area of medical intervention and little published research evidence to inform practice, which varies greatly between and within countries. This project raises complex ethico-legal issues relating to respect for patient autonomy, competence in the minor to give properly informed consent and promotion of the welfare and best interests of the minor.
As most adolescents experiencing gender variance, and their families, go through an acutely stressful time linked to pubertal development, the perceived lack of consistency in approaching these issues by professionals may add to their distress. This also makes it difficult for the multidisciplinary professional teams involved in their care to help these adolescents deal with their feelings and may increase the risk of unwanted acting out and self-harm. It is therefore highly desirable that there are commonly agreed guidelines for medical intervention endorsed by professional bodies, throughout the world, such as the professional medical colleges and, in the UK, the National Institute of Clinical Excellence (NICE). Moreover, such guidelines could be used to convince insurers to cover the cost of the most effective medication, even if expensive. The team's work may influence existing guidance from the UK Royal College of Psychiatrists (RCPsychs) (1998), the British Society for Paediatric Endocrinology & Diabetes (BSPED) (2005) and the Harry Benjamin International Gender Dysphoria Association (HBIGDA) (2001).
The Gender Identity Research and Education Society (GIRES) is administering the current project and, together with Mermaids, is partially funding it. The substantial majority of the funding is provided by two medical charities, The Nuffield Foundation and King's Fund, and also the Servite Sisters Charitable Trust Fund, all based in the UK.
The project team met in London, at the Institute of Child Health, for a two-day Symposium on 19 and 20 May 2005. It was agreed that Domenico Di Ceglie and Michael Besser should jointly chair the team, of which the members are:
• Michael Besser, St Bartholomew's Hospital, London, UK
• Caroline Brain, Great Ormond Street Hospital for Children & Middlesex Hospital, London, UK
• Polly Carmichael, Great Ormond Street Hospital for Children, UK
• Peggy Cohen-Kettenis, VU University Medical Centre, Amsterdam, The Netherlands
• Henriette Delemarre-van de Waal, VUUniversity Medical Centre, Amsterdam, The Netherlands
• Petra De Sutter, Ghent University, Belgium
• Domenico Di Ceglie, The Tavistock and Portman NHS Trust, London, UK
• Simona Giordano, University of Manchester Medical School, UK
• Wylie Hembree, Columbia University College of Physicians and Surgeons, New York, USA
• Peter Lee, Penn State College of Medicine, Hershey, Pennsylvania, USA
• Walter Meyer, University of Texas Medical Branch, Galveston, Texas, USA
• Bernard & Terry Reed, GIRES, UK
• Veronica Sharp, Mermaids, UK
• Norman Spack, Children's Hospital, Boston, Massachusetts, USA
• Russell Viner, Great Ormond Street Hospital for Children & Middlesex Hospital, London, UK
• Garry Warne, Royal Children's Hospital, Parkville, Victoria, Australia
The endocrine interventions to be considered included:
A - use of GnRH (gonadotrophin releasing hormone) analogues to suppress gonadal sex hormone production by inhibition of pituitary gonadotrophin secretion. Important issues are the start-time of this intervention in relation to pubertal development, the length of time over which it is safe to continue the medication and the immediate options regarding reproduction, together with their future implications. Issues regarding licensing, cost and availability are also important.
B - the use of sex hormones to initiate the development of secondary sex characteristics, which are in accord with the adolescent's gender identity when this is well established. Important issues are the appropriate start-time of this intervention, in relation to the prior use of GnRH analogues, and the immediate options regarding reproductive potential together with their future implications.
C - to consider the value of this staged approach, initial use of GnRH analogue alone followed by the addition of sex hormones, as compared to using high dose sex hormone intervention alone, or with the concurrent use of the GnRH analogue.
D - the use of other endocrine agents e.g. medroxyprogesterone acetate and anti-androgenic agents including cyproterone acetate and spironolactone.
Caroline Brain presented a review of the scant published evidence on treatment and the clinical risks in the adolescent population. She advised that current treatment is based upon theoretical or anecdotal considerations rather than evidence obtained from the outcomes of controlled research trials. The team members currently treating this group of patients then presented summaries of their own somewhat varied protocols and experiences (Henriette Delemarre-van de Waal, Peggy Cohen Kettenis, Peter Lee, Wylie Hembree, Norman Spack, Walter Meyer, Garry Warne and Caroline Brain). Petra De Sutter described the reproductive options available now, and those likely to become available, to adolescents prior to the commencement of medication to block pubertal development or administration of cross-sex hormones. Veronica Sharp described users' and parents' views of the available treatments, and the anguish they may experience when hormone blocking is delayed. Polly Carmichael described the psychological and legal issues relating to the ability of both adolescents and their parents/guardians to give properly informed consent. Simona Giordano described the ethical issues.
During the discussion of each presentation and in the final review of the proceedings, the Team broadly supported the philosophy of a staged approach to management, which involves the progression from reversible interventions to partially reversible ones, and finally to irreversible interventions. The following broad principles were agreed:
1 - In Holland, where clinicians use careful screening and selection tools and criteria, young trans persons, at times earlier than current practice in some centres dictates, appear to benefit from prevention of the experience of pubertal development in the undesired sex beyond Tanner Stage Two. This is as recommended under the existing HBIGDA Standards of Care and allowed, subject to a second opinion, under the existing RCPsychs guidance. This approach enables children to experience how it is to feel their 'own' hormones and is diagnostically relevant. Then, it provides more time for continuing careful assessment without committing children irrevocably to pubertal developments that can only be reversed with difficulty, or even not at all. The Dutch clinicians provide a fuller description of their approach in the first Appendix to this Report. However, undervirilised genitalia in trans girls would provide less material to be used if vaginoplasty were eventually performed. Although there are surgical means to deal this difficulty, the patient and her parents or guardians should be fully informed about its implications. In the UK, it is thought that patients might benefit from the reduction in ambivalence that the experience of pubertal development in the undesired sex to Tanner Stage 4/5 could bring. The BSPED Guidance recommends that this is continued in all cases until the development of secondary sex characteristics is complete, final height has been achieved and peak bone mass has been accrued. The British clinicians provide a fuller description of their approach in the second Appendix to this Report. Selection criteria will eventually differentiate these two types of persons. A task that other centres may consider, for the future, is to use the Dutch experience (and any other published data) to select those who are most likely to benefit from the use of GnRH analogues or medroxyprogesterone acetate to block further pubertal development after Tanner Stage Two.
2 - No validated research data were presented to support either approach. There has not been sufficient time to evaluate the long- term effects of starting the analogue at an earlier stage of puberty. It is necessary that a research project, ideally involving two or more centres sharing a common assessment protocol (to be developed), explores the benefits and drawbacks of these two approaches, before evidence based guidelines can be written. The research project would require ethical approval, which should facilitate the willingness of the clinical organisations involved to endorse the local research. The clinics in London, Amsterdam and Boston have embarked on a collaborative research project, as described below.
3 - GnRH analogues are the best available treatment to block pubertal development, with medroxyprogesterone acetate as a less desirable agent, which may have to be used in some circumstances. Clearly, medroxyprogesterone acetate may work but has to be more thoroughly monitored for its side effects and may require some combination with other blockers. Periodic monitoring of endogenous sex steroids is necessary to ensure efficacy of the protocol utilized. There appears to be the potential for reduction of bone density with any regimen that gives rise to prolonged periods of no sex steroids during what would normally be the years of pubertal development. However, this will reverse with gonadal steroid replacement, or with the cessation of blockers and the resumption of the previous pubertal development, accompanied by the production of endogenous sex steroids, if the adolescent were no longer affected by acute cross gender identification. Adolescents need standardised monitoring and testing throughout any endocrine treatment. The Dutch experience indicates how bone formation and height should be prudently monitored and regulated. The results, so far, are reassuring.
4 - Having achieved suppression of the endogenous hormone production, androgens or estrogens can be administered at a dosage that mimics normal pubertal development. The use of physiological gonadal steroids, e.g. estradiol, rather than equine or synthetic estrogen, permits accurate measurement of blood levels. This approach eliminates the use of medications that cannot be monitored and of anti-androgens, a group of drugs whose use is unnecessary and may be responsible for much of the morbidity experienced by trans people during transition management.
5 - More attention than hitherto should be given, by clinicians, users and parents, to the reproductive options available to the adolescent, which, with the benefit of new research, may continue to evolve. There is helpful information that can be provided for them to consider. The time constraints on these options differ between trans boys (FtM) and trans girls (MtF). Use of blockers in early puberty will prevent the storage of sperm for trans girls.
6 - Informed consent should be the outcome of a sustained educational process, rather than a single consultation, in order to achieve detailed understanding by the competent minor, and usually the parents or guardians, regarding the benefits, risks and side effects of any hormone blocking or cross-sex hormone intervention. While the ethico-legal issues that bear on this project are being explored by all the experts involved, clinicians may only wish to consider treating adolescents who are legally able to give informed consent. In cases where the competent patient is still a minor, clinicians may also consider it appropriate to have (or require) the consent of the parents or guardians. Whilst highly desirable, the consent of the latter is not an absolute legal requirement in some jurisdictions.
7 - Guidance on ethics and the law may help to clarify the ethico-legal grounds for peri-pubertal interventions. These could be: (a) respect for autonomy and (b) promotion of the adolescent's best interests. Psychological and physical harm are certainly caused by natural puberty that results in the development of secondary sex characteristics that have to be reversed, by means of costly, invasive and, in some cases, only partially successful procedures, because they are in conflict with an established core gender identity. Clinicians need to balance the potential for such harm against that potentially caused by interventions to delay natural pubertal development (which might include denying adolescents the opportunity to experience that development in a manner that is consistent with their phenotype). It has to be clarified in each individual case whether the adolescent experiencing atypical gender identity development can be autonomous and legally competent to ask for endocrine treatment.
8 - It could never be in the young person's best interest to commence cross-sex hormones at a peri-pubertal stage without informed consent. Guidance must include discussion of any largely irreversible effects of cross-sex hormones. In the case of an individual who later regrets transition, this may cause problems that can be severe, in both FtM and MtF patients, and may also require costly and invasive procedures that, in some cases, result in only partial reversal.
9 - In the light of the above considerations, and pending the outcome of the proposed research project, the team will work to develop interim amendments to the existing HBIGDA, BSPED and RCPsychs guidance for those organisations to consider. Approvals will, as necessary, be sought from other state and professional regulatory bodies. In addition, individual members of the team are preparing papers on these topics for submission to the academic journals and for presentation at the professional conferences relating to this field.
Meeting in Amsterdam - 31 March 2006
As agreed at the Joint Project Team's Symposium, held in London in May 2005, work has started on collaborative research. This involves the treatment centres in Amsterdam, Boston and London. On 31 March 2006, the clinicians from those centres met in Amsterdam. The Project Team members present were:
> Peggy Cohen-Kettenis
> Henriette Delemarre-Van de Waal
> Norman Spack
> Caroline Brain
> Polly Carmichael
> Domenico Di Ceglie
> Russell Viner
The design of the study and the measures to be used were discussed. As a first step, it was agreed that each centre will begin some use of the Dutch psychological screening protocol. The whole protocol is fairly extensive. As a first move, it was agreed that it would be a step forward if each centre would use a number of similar instruments on all its patients at Tanner Stage Two. This is only possible for those who come to the centres before that stage. Patients often come later. Further screening will then be conducted on the selected patients at appropriate intervals, to be determined. The clinicians from the three centres will meet again in October 2006.
=================
Appendix 1
The Dutch Approach
Most of our patients who apply for sex reassignment, which we begin with GnRH-analogue treatment, are 14 years or older and well into Tanner stage 3 or 4. However, if they are referred to our clinic at a younger age and have been diagnosed according to an extensive procedure and fulfill certain strict criteria, we consider them eligible to start GnRH treatment after they have reached Tanner stage 2. Typically, at the initiation of the physical changes of puberty, gender dysphoria becomes considerably worse. We do not entirely prevent the onset of puberty because we believe that adolescents should experience the beginning of biological pubertal development in order to make a more informed decision about having it curtailed. Also, since there is such individual variation in the timing of pubertal initiation, beginning analogue therapy at Tanner 2 provides a common starting point for all patients, when their physical development is still reversible. Our treatment with GnRH-analogue, triptorelin, is titrated to degree of breast development in girls and the testosterone level in boys.
We are currently treating 50 patients who began analogue therapy at various Tanner stages. Bone metabolism, bone age, growth and hormonal and metabolic parameters are closely followed throughout the years of treatment. We have found no reduction in bone accretion during pubertal suppression with GnRH analogue. The accretion of bone remains prepubertal. When cross-sex steroids are begun at the age of 16, bone density ultimately catches up. After two years on estrogen or testosterone, analogue-treated patients have a normal bone density for age. Final outcome will depend on whether our patients will attain a normal peak bone mass.
None of the patients who began treatment with GnRH analogue has reported regrets about treatment. This difference between the London experience and our own may be due to differences in our eligibility criteria. The most recent data from the largest clinical groups on the persistence of GID into adolescence and young adulthood come from Canada and the Netherlands. Approximately 20% of the children who have been diagnosed with GID when they were under 12 appear to suffer from GID as adolescents and young adults. However, this finding still implies that the large majority seems to 'outgrow' their GID before puberty. Precisely because of this finding, we believe that the diagnostic phase should be performed extensively and repetitively by highly skilled evaluators.
Of course, one should do everything possible to prevent harm caused by treating the 'wrong' adolescents. But harm may also come from not treating the 'right' adolescents or postponing treatment. Many of these patients may exhibit self-destructive behaviors and require heavy doses of psychotropic medication to deal with depression and anxiety. Their irreversible secondary sex characteristics will remain visible and contribute to life-long stigmatization.
From several studies of our group it appears that young adolescent GID patients function psychologically healthier than adult patients. In order to prevent the damage we have observed in our adult patients, and as a result of a number of follow-up studies, we have adjusted our treatment policy in recent years. We continue to evaluate our current treatment in prospective studies. This does not mean that we reject or do not see the value of other policies. In fact, the differences between the London and Amsterdam policies offer a unique opportunity to evaluate the long-term outcome of patients who have been treated according to the two protocols.
=================
Appendix 2
The British Approach
The analogue is prescribed at a later stage of pubertal development following the RCPsychs and BSPED guidelines, which recommend that adolescents have some experience of themselves in the post pubertal biological sex. Currently the criteria used by the British team for commencing analogue treatment include the following principles:
i. Significant level of distress associated with secondary sex characteristics and experience of being in "the wrong body".
ii. Serious level of conviction about cross gender identification both in statements and also in living in other gender role.
iii. Some therapeutic exploration has taken place.
iv. The use of the hypothalamic blocker should be considered as a treatment in its own right and should not be described as the pre-cursor to opposite sex hormones. The next stage of treatment, if any, should be left open for further exploration.
v. The importance of continuing regular meetings and ongoing therapeutic exploration should be emphasised.
vi. The assessment of the biological environment and physical development by the paediatric endocrinologist must precede the use of the hypothalamic blockers.
For specific endocrinological recommendations, see BSPED guidance.
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