Patient professional reference
Synonym: gender identity disorder
Gender dysphoria is the distress associated with the experience of one's personal gender identity being inconsistent with the phenotype or the gender role typically associated with that phenotype. Gender identity disorder is an increasingly outdated term as it erroneously suggests that being transgender is pathological. The role of health professionals in helping those who are transsexual or transgender is not to treat a disease, but to promote health and well-being in this group of people. This involves multidisciplinary care across a wide scope of health professionals.
The World Professional Association for Transgender Health (WPATH) leads many groups in urging the de-psychopathologisation of gender nonconformity worldwide. The WPATH standards of care state that being transsexual, transgender, or gender-nonconforming is a matter of diversity not pathology.
Gender dysphoria is the term used to describe the distress experienced by an individual about their assigned gender which is in conflict with their internal gender identity. For a DSM 5th edition (DSM-5) diagnosis, there must be a marked difference between the individual's expressed/experienced gender and the gender others would assign him or her, and it must continue for at least six months.Gender dysphoria is manifested in a variety of ways, including strong desires to be treated as the other gender or to be rid of one's sex characteristics, or a strong conviction that one has feelings and reactions typical of the other gender. Although there is wide support for a move to declassify gender identity issues as pathological, there remains a need for a diagnosis which will allow these individuals to access medical help and treatment which they may need to improve the quality of their life. The term gender dysphoria therefore relates to the problems caused by the difference in experienced and assigned gender.
The WPATH standards of care state that "The designation of gender identity disorders as mental disorders is not a license for stigmatization, or for the deprivation of gender patients' civil rights. The use of a formal diagnosis is often important in offering relief, providing health insurance coverage, and guiding research to provide more effective future treatments." In the words of Department of Health policy, "it cannot be overemphasised that being trans is not a mental illness."
Gender identity disorder
Gender identity disorder remains a diagnosis under the ICD-10 classification. WPATH is involved in the forthcoming revision of this for ICD 11. Currently ICD-10 categorises being transsexual as a mental health illness. It defines gender identity disorder as "a desire to live and be accepted as a member of the opposite sex, usually accompanied by the wish to make one's body as congruent as possible with one's preferred sex through surgery and hormonal treatment." Presence of the transsexual identity must be present for at least two years persistently and not be a symptom of another mental disorder.
A person who feels a consistent and overwhelming desire to effect a transition and fulfil their life as a member of the opposite gender. Many transsexual people actively desire and complete gender reassignment surgery.
Transgender, or trans
An umbrella term for a number of different gender experiences, often used to include transsexual people, transvestites and cross-dressers.
Trans woman/trans man
Trans woman refers to an individual who has been assigned as a male at birth, but who later
identifies as a woman. A trans man is an individual who has been assigned as a female at birth, but later identifies as a male. These are terms used to describe this person prior to having any surgery or obtaining a Gender Recognition Certificate (see below), as after either of these events, they would normally refer to themselves as a woman or a man respectively.
Definitions are evolving, and may vary between users and cause some confusion.
The Gender Recognition Act of 2004 in the UK allows transsexual people to change their legal gender. In the UK, individuals may apply to the Gender Recognition Panel for a Gender Recognition Certificate. Those applying under this process have to demonstrate that they have had a diagnosis of gender dysphoria and that they have lived in the changed gender role for at least two years. Once a Gender Regulation Certificate has been issued, that person should be identified as a man or a woman and not a "trans man" or "trans woman".
Once individuals have changed their name and formal style of address (ie Mr, Mrs, Miss, etc), their NHS records should be changed accordingly. A formal certificate should not be needed for this change to be affected.
The Equality Act of 2010 in the UK protects all individuals against discrimination. This includes gender or gender reassignment along with other characteristics such as age, disability, race and religion.
Prevalence figures vary and depend on methodology in studies attempting to establish data.
A survey by the Equality and Human Rights Commission in 2012 of 10,000 people found 1% had some degree of gender variance. This was partly conducted to investigate the most appropriate ways and wording to collect data, and cannot necessarily be assumed representative of the population as a whole.
A Gender Identity Research and Education Society (GIRES) publication in 2011, funded by the Home Office, estimates that prevalence is increasing.Their original report had estimated prevalence in the UK in 2007 as 20 per 100,000 people having sought medical help for gender variance. This represented 10,000 people of whom 6,000 had undergone gender transition. Of these, 80% were birth-assigned males choosing to become females, although this percentage is noted to be dropping. By 2010, 12,500 had presented for treatment. It was estimated that the number presenting for treatment is doubling every 6.5 years. The mean age of those presenting for treatment is 42. Those presenting for medical treatment are believed to be a tiny fraction of those affected by gender dysphoria. The GIRES report states currently around 100 children and adolescents are referred each year to the UK's single specialised gender identity service for this age. The number of referrals for this age group, however, is said to have been rising by 32% per year in recent years.
The Gender Recognition Panel in the UK publishes quarterly statistics. In the July-September 2014 period, 76 applications for Gender Recognition Certificates were made and 54 were processed. Of these, 80% were granted a Gender Recognition Certificate. In this period of time it was noted there was the highest ever percentage of requests from those registered female at birth (47%). Overall the numbers of applications has been stable over a period of five years years.
There is likely to be a balance of a number of genetic, hormonal and environmental factors involved in gender dysphoria, but the cause is essentially unknown. Twin studies indicate genetic factors have at least some role.
Individuals may present to a GP at various stages. They may have been living as a trans for some time, and want help in accessing medical or surgical treatment. They may present with the symptoms of the stress associated with suppressing feelings, or with lack of acceptance/understanding displayed by friends and family. Depression, self-harm and suicide may be more common in transsexual individuals.
This individual will need their GP to have an understanding, non-judgemental, confidential and supportive attitude in keeping with the duties laid down in the GMC Good Medical Practice guidance.The role of the GP is pivotal, not only in accessing specialist service, but in providing ongoing support, endocrine treatment and monitoring.
Some of the issues which it may be appropriate to explore include:
- The timescale of the gender identity issue and any change over time.
- The effect on relationships, job, family and social life.
- The effect on health and well-being. Symptoms of associated depression.
- Future ambitions and plans.
- Any steps taken to live in the identified gender - cross-dressing, hormonal medication, changes to appearance.
- Sexuality and relationships.
- Perceptions and reactions of others, attitudes of significant others.
- Feelings towards own gender-specific features such as genitals, breasts and body hair.
- Support network.
However, the presentation will differ in every individual, as will the relationship between that person and their GP, and the GP's own experience. It may be appropriate for some of these issues to be explored in secondary or tertiary services rather than in primary care.
Children presenting with gender dysphoria may:
- Prefer dressing in clothes usually worn by the opposite gender.
- Prefer the type of play usually enjoyed more by the opposite gender.
- Have more friends of the opposite gender.
- State that they are a gender opposite to that which was assigned to them at birth.
- Express a desire to be rid of their genitals, and find pubertal changes distressing.
- Have experienced bullying at school.
- Find it persists as they enter adolescence, or there may be remission - sometimes going on to homosexuality or bisexuality.
Prior to referral a GP would normally be expected to:
- Take a detailed history.
- Perform a general physical examination, including a genital examination (unless the individual declines this). Include measurements of weight, height and blood pressure.
- Assess mental health.
- Consider baseline blood tests if endocrine treatment being considered:
- Fasting blood glucose
- Lipid profile
Referral of adults
This may vary depending on the circumstances and wishes of the individual, the results of physical and mental health assessment, and availability of local service provision.
Eligibility for medical or surgical gender treatment requires:
- Confirmation of a diagnosis of gender dysphoria, which must be persistent and well documented. The diagnosis should be confirmed by engagement with a psychiatrist, psychotherapist, psychologist or counsellor, and ongoing psychotherapeutic support should be continued through treatment and beyond.
- Capacity to make informed decisions
- Any mental or physical health issues to be controlled.
Therefore, the first referral may often be to mental health services. In some circumstances, where an individual has already accessed certain services, it may be appropriate to refer directly to a surgeon, gynaecologist, endocrinologist, etc.
Swift referral to specialist gender services is the ideal. A number of NHS and private specialist services exist in the UK. This is a tertiary service, and depending on local protocols may be accessed from primary or secondary care. Specialist gender services consist of a multidisciplinary team, which may include psychiatrists, psychologists, psychotherapists, counsellors, surgeons of a number of specialities, endocrinologists, speech and language therapists, dermatologists, occupational therapists, nurses and social workers.
Where hormonal treatment is advised, GPs would be expected to prescribe and monitor under guidance from specialist services.
Referral of children and adolescents
Young people under the age of 18 should in the first place be referred to the local Child and Adolescent Mental Health Service (CAMHS). This is for assessment, diagnosis, and support with associated psychological difficulties. Where appropriate, CAMHS may consider referral to the UK's only specialist gender service for children and adolescents, based in London (the Tavistock & Portman NHS Foundation Trust).
In the UK, good practice guidelines for the assessment and treatment of gender dysphoria are laid down by the Royal College of Psychiatrists, and endorsed by a host of organisations involved in management. These guidelines are informed by the Standards of Care set by the WPATH.
Note that it is important to address users of gender services as they would wish to be addressed. Ask which they would prefer, discreetly, as soon as possible. Mistakes in gender address can cause offence and distress.
Management is multidisciplinary and may involve any number of the following:
- Psychotherapeutic support.
- Endocrine treatment - see below for specific details.
- Surgery. 12-18 months of endocrine therapy is usually required prior to surgical intervention. Surgical treatments include:
- Chest surgery - breast augmentation or mastectomy.
- Genital surgery - for those becoming male: vaginectomy, hysterectomy, salpingo-oophorectomy, phalloplasty, metoidioplasty, testicular prosthesis, scrotoplasty.
- Genital surgery - for those becoming female: penectomy, orchidectomy, vaginoplasty, cliteroplasty, labioplasty.
- Facial surgery - particularly feminisation surgery.
- Vocal surgery - to change pitch of voice.
- Speech and language therapy - help with developing gender-appropriate voice and communication skills.
- Hair treatments - including hair transplantation, hair removal, hairpieces.
- Exploration of fertility implications of treatment, and gamete storage.
As with any hormonal treatment, risk factors must be assessed, and risks and benefits explained before treatment. Baseline and ongoing monitoring is required. Treatment, once initiated, is generally lifelong. Some hormonal treatments are discontinued four weeks prior to gender surgery, and restarted four weeks afterwards. Endocrine treatment should be initiated and overseen by a specialist in this field. However, GPs will be involved in ongoing prescribing and monitoring, and therefore should be familiar with risks, contra-indications, etc of individual preparations. Moreover, guidelines recommend that prior to engagement with specialist services, GPs may be required to provide a "bridging" prescription for hormonal treatment. This might be to provide increased safety if the person is accessing treatment unmonitored via the internet, or if there is a delay causing distress before specialist help can be obtained.
For trans women, or for women following genital change surgery, the goal is to suppress androgens and provide oestrogen therapy. Traditionally cyproterone acetate or spironolactone have been used, but as these have been associated with risks and side-effects, increasingly depot injections of gonadotrophin-releasing hormone (GnRH) analogues are used. These include goserelin and leuprorelin. Typical doses would be goserelin 3.6 mg every four weeks, or 10.8 mg every three months. This would be stopped if gonads were removed surgically. Oestrogen supplementation can be delivered orally (1-6 mg per day) or subcutaneously (50-150 microgram patches every three days or in gel) with an optimum dose achieved by monitoring of plasma levels. Lipids, liver function and blood pressure should also be monitored. Contra-indications and cautions for oestrogen use should be considered (thromboembolic disease, migraine, cerebrovascular disease, coronary heart disease, etc).
For trans men, or men following genital change surgery, the goal is to suppress oestrogens and provide testosterone therapy. Long-acting GnRH analogues as above are used to suppress ovarian function, and stopped if ovaries are removed. Testosterone replacement may be given in the form of depo injections (eg, Nebido® 1 g every three months, or Sustenon® 250 mg every 2-3 weeks) or by transdermal gel (5 g per day). Contra-indications and cautions should be considered (eg, breast cancer, uterine cancer, severe liver disease). Haemoglobin and haematocrit levels should be monitored as polycythaemia may occur.
Hormone treatments in transsexual individuals are considered to be relatively safe, and although mortality is higher than in the general population, this is not thought to be related to hormone treatment.
Multidisciplinary care is crucial. Most children and adolescents seen at the national specialist Gender and Identity Development Service are referred by CAMHS. Psychotherapy, counselling, and family therapy are integral aspects. The option of deferring puberty with the use of GnRH analogues is increasingly used to allow more time for the individual to be comfortable with their gender identity before undertaking any irreversible treatment. Gender dysphoria in children does not necessarily persist into adulthood; indeed, studies suggest it only does so in 6-23%. If gender dysphoria persists then hormone treatment may be considered from the age of 16. Seamless transition to adult care services at the age of 18 should be the norm if this is the case.
Outcome of the various treatments used has been difficult to establish but is generally considered to be good and continuing to improve. Generally assessments of outcome from genital surgery show benefit to well-being, cosmetic result and sexual function.[17, 18] Outcome of hormonal treatment has also been shown to improve well-being and quality of life. Few report regret following treatment.
Studies have reported higher mortality rates in transsexual individuals, as well as higher rates of suicide and psychiatric morbidity.[20, 21]These rates are higher irrespective of whether gender-related surgery has taken place. Mostly mortality was not related to hormone treatment, although those treated with oestrogen may have a slightly higher mortality related to cardiovascular causes.
Surgical complications may include necrosis, fistulae, stenosis, urinary problems, anorgasmia and poor cosmetic result.
Side-effects of hormonal treatment may be a problem; minimisation of risks by lifelong monitoring is required.
Peer and family support are conducive to good outcomes.
Further reading and references
Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People, version 7 2012; World Professional Association for Transgender Health (WPATH)
Gender dysphoria; American Psychiatric Association, 2013
Trans - a practical guide for the NHS; Dept of Health, October 2008
The ICD-10 Classification of Mental and Behavioural Disorders; World Health Organization
Good practice guidelines for the assessment and treatment of adults with gender dysphoria; Royal College of Psychiatrists (2013)
Technical Note - Measuring gender identity; Equality and Human Rights Commission survey, 2012
The Number of Gender Variant People in the UK - Update 2011; Gender Identity Research and Education Society
Heylens G, De Cuypere G, Zucker KJ, et al; Gender identity disorder in twins: a review of the case report literature. J Sex Med. 2012 Mar9(3):751-7. doi: 10.1111/j.1743-6109.2011.02567.x. Epub 2011 Dec 6.
Good Medical Practice (2013); General Medical Council
Gender Identity and Development Service (GIDS); Tavistock and Portman NHS Foundation Trust.
Endocrine Treatment of Transsexual persons; Endocrine Society Clinical Practice Guideline
Meriggiola MC, Berra M; Safety of hormonal treatment in transgenders. Curr Opin Endocrinol Diabetes Obes. 2013 Dec20(6):565-9. doi: 10.1097/01.med.0000436187.95351.a9.
Hembree WC; Management of juvenile gender dysphoria. Curr Opin Endocrinol Diabetes Obes. 2013 Dec20(6):559-64. doi: 10.1097/01.med.0000436193.33470.1f.
Garaffa G, Christopher NA, Ralph DJ; Total phallic reconstruction in female-to-male transsexuals. Eur Urol. 2010 Apr57(4):715-22. doi: 10.1016/j.eururo.2009.05.018. Epub 2009 May 19.
Klein C, Gorzalka BB; Sexual functioning in transsexuals following hormone therapy and genital surgery: a review. J Sex Med. 2009 Nov6(11):2922-39
Murad MH, Elamin MB, Garcia MZ, et al; Hormonal therapy and sex reassignment: a systematic review and meta-analysis of quality of life and psychosocial outcomes. Clin Endocrinol (Oxf). 2010 Feb72(2):214-31. doi: 10.1111/j.1365-2265.2009.03625.x. Epub 2009 May 16.
Asscheman H, Giltay EJ, Megens JA, et al; A long-term follow-up study of mortality in transsexuals receiving treatment with cross-sex hormones. Eur J Endocrinol. 2011 Apr164(4):635-42. doi: 10.1530/EJE-10-1038. Epub 2011 Jan 25.
Dhejne C, Lichtenstein P, Boman M, et al; Long-term follow-up of transsexual persons undergoing sex reassignment surgery: cohort study in Sweden. PLoS One. 2011 Feb 226(2):e16885. doi: 10.1371/journal.pone.0016885.
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