The purpose of this chapter is to introduce the reader to the concept of gender identity disorder, to give a broad overview of current thoughts on mechanism, to recognize the strengths and weaknesses of the international standard of care (called Harry Benjamin Standards of Care, version 6) and to discuss in broad terms the management of the client group.
It is important to distinguish a number of terms in association with this group of patients.
Gender identity disorder is a broad term covering all patients who perceive a conflict between their body’s physical characteristics and their internalized core sexual identity. Under current psychological teachings, core sexual identity is formed at a very young age, usually around 3 years of age. The conflict arises when this perception of one’s own gender is mismatched to the body’s external appearance. The onset of puberty only makes this difference worse, and significant psychological distress often ensues. When dissatisfied individuals meet specified criteria in one of two official nomenclatures — the International Classification of Diseases-10 (ICD-10) or the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) — they are formally designated as suffering from a gender identity disorder. Some persons with gender identity disorder exceed another threshold — they persistently possess a wish for surgical transformation of their bodies. Not surprisingly, the underlying conflict in itself can give rise to secondary psychological and overtly psychiatric diagnoses. The social consequences cannot be overstated, as society places great emphasis on conforming behaviour appropriate to gender stereotypes.
However, some societies accept the existence of a gender between male and female, e.g. in parts of the South Pacific, where such individuals are thought to be particularly special and are revered. There is thus an implicit difference in this culture in that ‘gender discordance’ does not necessarily lead to gender identity disorder.
There is a recognized overlap between transgender patients and transvestite patients, but the two diagnoses are quite separate. Transvestism, or cross-dressing, often for a measure of sexual or emotional gratification, is classified as a paraphilia, but it is recognized that some patients will progress from this over time to consider gender realignment surgery.
The incidence is probably 1 in 30000 in males and about 1 in 100000 in females. Higher prevalences have also been reported, and the true figure is speculative. A report from the interdepartmental Working Group on Transsexual People in 2000 estimated that there were around 1300-2000 male-to-female transsexuals and 250-400 female-to-male transsexuals living in the UK. The lobby group Press for Change, however, estimates the number of post-operative transsexuals in the UK to be 5000.
Some authorities strongly believe in a biological basis for gender identity disorder, with evidence of changes in brain nuclei on imaging and post-mortem studies. Other writers argue that there is a psychodynamic basis around the concept of gain. Strictly according to currently accepted criteria, gain from a cultural/societal perspective is not grounds for classifying that individual as having gender identity disorder. Also excluded are intersex conditions such as genetic mosaicism, Klinefelter’s syndrome and hormonal abnormalities such as congenital adrenal hyperplasia.
Although there are diagnostic criteria as to what constitutes gender identity disorder, it should be stated that the basic premise that it is a mental illness has been challenged. Some opinion sees parallels to the way that homosexuality was medicalized as an illness until recently, before it was removed from the DSM in the 1970s.
The best-known standards of care are from the Harry Benjamin International Gender Disorder Association (HBIGDA); the most up-to-date standards are version 6, revised in 2001 (HBSOC v6, 2001). The overarching goal of the Standards is to provide lasting personal comfort for the individual through a combination of medical, surgical and psychological interventions aimed at maximizing self-esteem, self-fulfilment and wellbeing. Diagnosis and management of this patient group is always multidisciplinary. Ideally, the team should include an endocrinologist or a physician with expertise in prescribing hormone therapy, a psychiatrist, a psychologist, the specialist surgeon and the patient’s GP. Specialist voluntary sector organizations with an interest in the condition can provide exceptional peer support and counselling. The guidelines are not prescriptive, and recognize that a flexibility is required to tailor treatment options to the individual’s needs.
The Harry Benjamin International Gender Dysphoria Association also publishes an ethical framework in which it expects practitioners to operate. There is an American slant to the published document, but much of what is stated is covered by the General Medical Council (GMC) documents on confidentiality and duty of care to patients. Guideline 9 is quoted in full:
Members shall make decisions regarding care based solely on sound professional practices, without regard to race, religion, sexual orientation (including non-stereotypical or non-cultural gender role presentations), nationality, or age (unless related to medical conditions which preclude certain treatments). HIV status shall not be considered in the decision to evaluate or treat patients.
Although not explicit in the guidelines, a lower age of 18 is strongly recommended in the UK field of practice. Other countries, e.g. Holland and recently Australia, have begun medical treatment in pre-pubertal patients. Although this may sound contentious, it makes medical sense because of the complex and overwhelming changes that puberty produces, in these patients in an unwanted manner.
Legal framework within the UK
It is possible to change name by deed poll, obtain a new driving licence and new bank account under existing legislation. This would be expected during the real-life test (see below).
Recent changes to the laws of the United Kingdom, with particular reference to Human Rights legislation, have been very positive in trying to tackle deep-seated fears around stigmatization, employment and freedom to associate. Currently the Gender Recognition Bill is being debated in the House of Lords; this would allow a birth certificate to be changed to reflect the new gender. The implications of this legislation on inheritance are currently unclear.
Management of patients with gender dysphoria
Every patient is unique, often with complex psychological problems secondary to many years of gender conflict. Feelings of isolation, stigmatization and fear of rejection are common. A full, detailed and tactful history by an experienced member of the gender team, usually the psychiatrist, is a first stage. A history of the patient ‘feeling trapped in the wrong body’ from an early age is very common. Early childhood should also be explored, including relationships with parents, sibs, other family members and at school. It is important to explore the patient’s sexual orientation, which is usually formed in the teenage years. While the patient’s sexual orientation is useful in informing the overall picture and perhaps influencing the type of surgery, it is quite separate from the underlying diagnosis — a transsexual patient can be homosexual, bisexual or heterosexual.
Further aspects of history, including past history; family history, particularly of propensity to thrombotic episodes; and smoking history are also relevant. A clinical examination should include blood pressure, a check for varicose veins, (as a predisposing factor for venous thrombosis) and external genitalia if permitted. Many patients will refuse this last request unless absolutely necessary. Karyotyping studies are usually not indicated, but liver function tests, hormone profile (follicle stimulating hormone (follicle stimulating hormone), luteinizing hormone (luteinizing hormone), testosterone/oestradiol, prolactin and sometimes adrenal hormones), haematology and bone density are usually performed. There may be a place for thrombophilia testing as per family or past medical history if oestrogen therapy is being contemplated.
Having identified a gender identity disorder, triadic therapy should follow. In the usual sequence it would be:
- • real-life test for 12 months (some authorities would say 24 months), see below
- • hormone therapy, see below
- • surgical change.
There is a logic to this sequence, although earlier use of hormones has been advocated. The irreversible nature of surgical treatment makes it important that the diagnosis is reviewed regularly, and the patient’s views on this must be paramount. Some authorities insist on two independent reports on the patient’s progress in the real-life test before surgery is undertaken.
With regards to hormonal therapy, the HBIGDA guidelines set three criteria. Firstly, patients should be over 18. Secondly, they should be aware of the effects and risks of taking the drugs. And thirdly, they should have documented proof that they were living in their desired gender role for at least 3 months (known as the ‘real life experience’), or have undergone a minimum of 3 months of psychotherapy.
Cross-sex hormonal treatments play an important role in the anatomical and psychological gender transition process for properly selected adults with GIDs. Hormones are often medically necessary for successful living in the new gender. They improve the quality of life and limit psychiatric co-morbidity, which often accompanies lack of treatment. When physicians administer androgens to biologic females and oestrogens, progesterone, and testosterone-blocking agents to biologic males, patients feel and appear more like members of their preferred gender.
Male-to-female patients are treated with oestrogens. The safest preparation is oestradiol via the transdermal route, e.g. Estraderm MX 100-mg patches twice weekly. Bypassing the liver appears to reduce the risk of thromboembolism. Oral oestrogens, e.g. Premarin or Stilboestrol, are still occasionally used. The starting dose of Premarin for a patient is 1.25 mg, but doses of 7.5 mg per day are occasionally prescribed. Much of this is tailored to patient response to therapy, but the higher the dose, the more likely are side effects. Patients can expect to experience: breast growth and some redistribution of body fat in line with a more feminine appearance, decreased upper body strength, softening of the skin, a decrease in body hair, slowing or stopping of loss of scalp hair, decreased fertility and testicular size, and less frequent and less firm erections. These changes can take time to develop, and periods of up to 2 years may be required to see a full effect. Gynaecomastia is likely with treatment, but often the result is disappointing. Augmentation mammoplasty may then be indicated. Provera 5 mg b.d. for 3-6 months may help ductal breast tissue development.
Adjunctive treatments are usually undertaken too, e.g. speech therapy and electrolysis or other forms of depilation. Many authorities use cyproterone, finasteride or spironolactone as an anti-androgen preparation in male-to-female patients, and interval orchidectomy has also been reported prior to full gender surgery. Preservation of scrotal skin is necessary in this latter context.
Female-to-male patients are treated with testosterone. This can be as Sustanon injections, Andropatch or Testogel dermal preparations, or by a 400- to 600-mg implant subcutaneously every 4-6 months. Patients can expect the following permanent changes: a deepening of the voice, clitoral enlargement, reduction in breast size, more facial and body hair, and male pattern baldness. Reversible changes include increased upper body strength, weight gain, increased sex drive, and decreased hip fat.
A full discussion of the surgical procedures available is outwith the scope of this chapter. A reference is give for further reading for the interested individual.
With regard to surgery, there are six eligibility criteria within the Standards, the most important of which are that the patient should be a legal adult, have had 12 months of continuous hormone therapy and have lived in their desired gender role for a year. There are also two ‘readiness’ criteria. Patients should demonstrate that they are consolidating their gender identity and enjoy better mental health as a result of dealing effectively with work, their family and relationships. Psychiatrists are required to check that patients meet these criteria.
Once the necessary agreements have been met within the multidisciplinary team members, genital tract surgery is performed. The penis and testes are removed, the scrotal skin fashioning part of the neovagina. In variations of the procedure, part of the descending colon is used to fashion a neovagina, but this is a more complicated procedure. Preservation of the glans penis to construct a clitoris has also been described.
A simpler process of penile amputation and orchidectomy can be undertaken if there is no specific need to have a neovagina, e.g. if no penetrative sexual activity is planned. A test case in Sheffield a few years ago means that all health funding authorities should provide this as part of NHS care.
Other procedures, e.g. breast surgery and thyroid cartilage shaving can be undertaken; the list is extensive, but usually private funding is required.
This is performed in stages. Usually a mastectomy is performed first, followed by hysterectomy and oophorectomy. Construction of a phallus with the necessary urethral extension and erectile tissue is extremely specialized and is only performed in a few centres in the UK. For this reason, many patients elect to stop after the hysterectomy.