08 gender dysphoria – an introductory guide for gps
The Gender Trust Gender Dysphoria – An Introductory Guide for GPs and Health Professionals
This information sheet is produced as an introductory guide to General Practitioners, Counsellors and other healthcare professionals and is a brief up-to-date summary of the medical aspects of gender dysphoria in the male-to-female transsexual patient. Gender dysphoria is a relatively uncommon condition, and many GPs may never have encountered a transsexual (TS) patient before. Information in many medical/psychiatric textbooks is scanty and out-of-date, especially in the light of recent research which demonstrates a basis for the condition in brain anatomy (Swaab et al., 1995). Standards of Care A set of Standards of Care for the hormonal and surgical gender reassignment of gender dysphoric persons was laid down some years ago by a conference of medical professionals (Harry Benjamin International Gender Dysphoria Association), and is widely used as a set of guidelines within the medical profession in many countries including the UK. These standards lay down a set of rules governing gender reassignment treatment. Central among these rules is a requirement for a 'real-life test' (RLT) of at least one year lived in the new gender role, along with two psychiatric referrals, before surgery is permitted. There are also guidelines regarding hormone treatment. It must be emphasised that the Standards do not have the force of law, and are now considered overly rigid by many patients and professionals alike. In particular, the Standards call for a minimum of three months of psychotherapy before hormone treatment is initiated, but most authorities on the condition agree that this is unnecessary in the majority of patients. Likewise, the Standards call for a minimum 1 year RLT before permitting orchidectomy; many surgeons and psychiatrists in Britain recognise the value of earlier orchidectomy in appropriate patients. Diagnosis The diagnostic criteria normally used for diagnosing gender dysphoria (often termed 'Gender Identity Disorder' (GID) by psychiatrists) are laid down in the American Psychiatric Association's Diagnostic and Statistical Manual, 4th edition (referred to as 'DSM-IV'). In summary however, the key features of GID are: • A strong and persistent cross-gender identification.
• Persistent discomfort with their assigned natal sex and its associated gender role.
• Absence of any physical intersex condition.
• Clinically significant distress or impairment of social or occupational functioning. The diagnosis is properly made by a Consultant Psychiatrist with special experience of gender problems; however a GP, Counsellor or general Psychiatrist might reach a tentative diagnosis and would then refer the patient to a suitable specialist. Care is necessary when the patient has a separate psychiatric condition such as schizophrenia. In some cases, such conditions may mimic gender dysphoria. Existence of a separate psychiatric condition does not necessarily contraindicate gender reassignment provided that GID can be clearly demonstrated to exist independently of other conditions. In particular, depressive conditions are very common among transsexuals (for obvious reasons depression can be a consequence of severe gender dysphoria) and should be treated alongside the GID. Once the diagnosis is made, the specialist will probably prescribe hormone treatment and possibly other procedures such as speech therapy. In addition, routine blood tests are required for TS patients under hormone treatment; provision of most of these services will usually be a matter for the patient's GP in consultation with the patient's Consultant Psychiatrist. The principal Gender Identity Clinic (GIC) within the NHS is located at Charing Cross Hospital, London. There are also a few regional GICs. At present some NHS clinics have a policy of only accepting referrals from psychiatrists, so as a first step the GP may need to refer the patient to a local psychiatrist for initial assessment and referral. It appears at present (as reported by patients) that all the NHS GICs are severely overworked with long waiting lists, and struggle to provide timely treatment to patients; there is also widely reported patient dissatisfaction, particularly with Charing Cross. For these reason, many patients opt to have a private Consultant Psychiatrist perform the diagnosis and recommend treatment, some of which can be NHS provided depending on local policy.
Counselling and Psychiatry
It should be emphasised that gender dysphoria itself is not a psychiatric disorder, although it may be a contributory factor for other psychiatric conditions such as depressive conditions. Furthermore, some delusional conditions may mimic gender dysphoria, making diagnosis by a Consultant Psychiatrist experienced in gender identity issues advisable. Transsexuals vary greatly in their need for counselling or psychiatry. At one extreme, one could see a patient who has detailed knowledge of the condition, has planned exactly how she intends to deal with it, and only requires the diagnosis to be confirmed by a Consultant Psychiatrist who will start her on the appropriate treatment. Conversely, a patient might have a severe depressive disorder and a history of suicide attempts and might need extensive support from a counsellor and/or psychiatrist before or during their gender role changeover. They may also be uncertain as to whether they are genuinely transsexual or not. Patients with severe psychiatric problems associated with their GID should be referred to a psychiatrist experienced in transsexual issues. Other patients will probably find the services of a counsellor sufficient, again it must be emphasised that it is important to refer patients to a counsellor experienced in transsexual issues. Attempting a psychiatric 'cure' on a genuine transsexual person is disastrous and must be avoided at all costs; an experienced gender counsellor will be able to help the patient explore her own issues and experiences and decide for herself whether she is indeed a genuine TS who should undergo sex reassignment, or if she is in fact a transvestite who merely requires support in learning to accept her own nature. The Real Life Test It is normal practice for any Gender Identity Clinic or private Consultant Psychiatrist to require a 'Real Life Test' (RLT) in which the patient lives and works full-time in the new gender role, before genital surgery is performed. The patient will change her name legally at the start of the RLT, and is expected to demonstrate her ability to work (this includes voluntary work, or higher education) and function socially as a woman. The early stages of RLT can be stressful to some patients: much re-learning is required, she may experience rejection from family, friends and others, as well as numerous practical problems. It is important that the patient receives the maximum possible support during this time; her counsellor will probably be the main focus of support, but a co- operative and sensitive attitude on the part of GPs and practice staff is also important. Once legal name- change has occurred, the patient should be referred to by her new name, and treated as female. The NHS has a policy of issuing new patient numbers to transsexual patients (and amending their records to show the new gender). Assistance with this administrative issue should be given (at the time of writing, the PPSA is the body responsible). Hormone Treatment Once the patient has been diagnosed with gender dysphoria, the Consultant Psychiatrist will normally decide to initiate hormone treatment. This involves administering large doses of female sex steroids (oestrogens, usually accompanied with progestrogens) to induce the development of female secondary sexual characteristics. In a pre-operative subject this will normally be accompanied by some form of anti-androgen treatment to reduce the effect of the patient’s endogenous male sex hormones. The effects of feminising hormones vary greatly from patient to patient. Younger patients generally obtain better and more rapid feminisation, although genetic factors are also highly significant. With appropriate dosage, most patients experience noticeable changes within 2--3 months, with irreversible effects after as little as 6 months. Feminisation continues at a decreasing rate for a period of two years or more, often with a 'spurt' of breast growth and other feminisation when the testes are removed by orchidectomy or GRS. The main effects of feminising hormones are as follows: • Fertility and 'male' sex drive drop rapidly, this may become permanent after a few months.
• Erections become infrequent or unobtainable.
• Patients report increased female-type sex drive.
• In time the penis and scrotum may atrophy to some extent, requiring the patient to regularly stretch them
by hand to maintain adequate donor material for eventual GRS. The testes and prostate also atrophy.
• Breasts develop. Typical final breast size is somewhat smaller than that of close female relatives. The
nipples expand and the areolae darken to some extent, but breast development may be unsatisfactory
particularly in older patients, in which case implants may be desired. Breast growth can be greatly augmented by use of an appropriate progestrogen, causing a more natural breast to form with lactative and ducting tissue as well as the fatty tissue laid down by oestrogen treatment.
• Body and facial fat is redistributed. The face becomes more typically feminine, with fuller cheeks and less
angularity. In the longer term, fat tends to migrate away from the waist and be re-deposited at the hips and buttocks, giving a more feminine figure.
• Body hair growth often reduces and body hair may lighten in both texture and colour. There is seldom any
major effect on facial hair, although if the patient is undergoing electrolysis, hormone treatment does noticeably reduce the strength and amount of re-growth.
• Scalp hair often improves in texture and thickness, and male pattern baldness generally stops progressing.
Some patients find that some recently-lost hair will grow back to some extent. but severe hair loss will necessitate hair transplants or a hairpiece or wig. Some studies suggest that topical application of minoxidil (2 % or 5 % solution; the 2 % is available without prescription under the brand name 'Regaine') may reverse hair loss to some extent when it is used alongside hormone therapy. Studies have found it to be of marginal benefit in normal males (due presumably to the continuing effects of dihydrotestosterone) but beneficial in females or androgen-suppressed males.
• The skin and hair become less greasy; spots and acne generally improve. Some patients find their skin
becomes very dry; many patients will need to change their skin-care regime after starting hormones.
• Metabolic rate decreases; many patients gain weight. Additionally, muscle mass is often lost.
• Many patients report brittle fingernails; some patients have claimed improvement in this case by taking
• Many patients report sensory and emotional changes: heightened senses of touch and smell are common,
along with generally feeling more 'emotional'. Mood swings are common for a while following commencement of hormone therapy or any change in the regime.
• Hormones are most commonly administered orally; however, depot injections or skin patches are sometimes used, especially in patients with liver problems, as they avoid the 'first pass' through the liver after absorption in the digestive tract. There has been debate in recent years over whether to administer a constant dosage of hormones every day, or whether to mimic a natural menstrual cycle by reducing or stopping oestrogen for 7-10 days per 28 and adding or increasing a progestrogen during that period. No advantage has been found to the cyclic method; its principal effect seems to be to induce extreme mood swings similar to PMS. There is some evidence that the non-cyclic approach produces slightly more rapid feminisation, and so a non-cyclic regime is widely regarded as preferable today. There are also some risk factors associated with hormone therapy, the most serious of which is a risk of deep-vein thrombosis (DVT) or pulmonary embolism (PE), which can be life-threatening. The risks appear to be much higher if the patient is over 40 years old, overweight, or a smoker. Transsexual patients who smoke should be strongly encouraged to quit. Hormone treatment must be discontinued for some time (typically 3-6 weeks) prior to any form of major surgery due to the risk of thromboembolic events. Likewise if the patient suffers an injury resulting in immobilisation, hormones should be withdrawn. In cases of minor surgery it may be safe to continue hormone treatment, but in all cases the advice of the surgeon and anaesthetist should be sought. The manufacturer's safety data for the hormone(s) chosen should be consulted for full information; but it must be noted that the drugs companies do not acknowledge the use of these drugs in transsexual subjects and clinical data specific to TS patients is scarce. Fluid retention and/or hypertension may result from hormone treatment. A change in the hormone regime often helps; for example several patients have experienced water retention or hypertension when taking the progestrogen levonorgestrel, but have returned to normal when this was replaced by an alternative progestrogen such as medroxyprogesterone acetate ('Provera'). If a particular hormone appears to be producing poor results or side-effects then a change in regime is probably wise: hormone therapy for transsexual patients is still somewhat 'hit-and-miss' although a consensus does appear to be emerging; much good research has been published by Prof. Gooren of Amsterdam. If no feminisation whatsoever is seen (not even the tender nipples that precede breast growth) after 2 – 3 months, or if feminisation is very limited over a longer period, then it may be beneficial to refer the patient for a serum androgen level test (testosterone and DHEAS), as some patients overproduce androgens to the extent that feminising hormones have little effect, and perhaps also refer the patient to an endocrinologist experienced in the treatment of male-to-female transsexual patient.
Certain blood tests are advisable on a routine basis for patients undergoing hormonal sex reassignment. Opinions differ as to which checks are required and how often, but as guide, liver function, serum lipids and blood pressure should be checked annually at a minimum. It is advisable to check more frequently if the patient is preoperative (pre-ops require higher dosages and hence are at greater risk of adverse effects), is also taking anti-androgens, or has any other factor predisposing her to side-effects such as being overweight, being a smoker, being over 40 years old, or having any relevant medical history (e.g. hypertension, liver problems etc). Some practitioners also advise the checking of fasting glucose (high dose hormone/anti- androgen treatment may affect carbohydrate metabolism), thyroid function, blood clotting time and prolactin. The necessity or otherwise of checking serum prolactin has been debated recently - some elevation of prolactin is to be expected under aggressive oestrogen treatment and would not necessarily indicate a problem, conversely there have been reports of pituitary prolactinoma in a few TS patients, which would be detectable by an excessively high serum prolactin level that fails to drop when oestrogens are temporarily discontinued. Some practitioners also recommend monitoring the levels of sex hormones in the blood, particularly testosterone for pre-op male-to-female subjects. It is debatable whether this is necessary if the patient reports satisfactory physical development, however if the hormone treatment is producing poor results and it is proposed to prescribe an unusually high dosage of hormones or anti-androgens, then such a test might be indicated. Likewise, if prescribing anti-androgens to an agonadal subject (post-op or post-orchidectomy) is contemplated, such a test is indicated - it is normally considered unwise to administer anti-androgens to a post-op subject. When sex hormone levels are measured, it must be borne in mind that anti-androgens that work as receptor antagonists may skew the results, since the body's response to a given serum androgen level will be depressed relative to a normal subject, even though the measured androgen level may not be much below normal. Normal testosterone levels are typically considered to be 300-1000 ng/dl for a male, 5-85 ng/dl for a female. It should also be borne in mind that serum oestrogen levels may be misleading. With an effective dose of oestrogen being administered, there is little reason to perform this test; and the normal test for serum oestradiol is insensitive to ethinyloestradiol and certain other forms of oestrogen anyway, which may cause misleading results. Gender Reassignment Surgery Techniques, precise details of post-operative care and results obtained vary enormously from surgeon to surgeon. Patients should be advised to exercise care in their choice of surgeon, as results obtained seem to vary from very poor (looking most unlike natural female genitals, and having little sensation) to excellent (indistinguishable from natural female genitals without an internal examination, and having full sexual sensation). Unfortunately, complications are not uncommon with GRS, and some surgeons have a very much better success rate than others. Patients would be well advised to choose a surgeon who has extensive experience of this type of surgery, and publishes statistics of results obtained and patient satisfaction, rather than relying on the surgeon's own claims. It is best to talk to patients who have actually had GRS performed by various surgeons, and to obtain pictures of typical results, before choosing a surgeon. Consultant Psychiatrists and Counsellors specialising in transsexual issues will usually be able to offer advice on choice of surgeon, and may have access to pictures of results; there are also relevant resources available on the Internet. Contrary to what has been written in some (now outdated) guides to gender reassignment, modern, sophisticated male-to-female surgery is available in Britain. Most surgeons will issue their patients with detailed pre-op preparation instructions. The main requirement is to withdraw hormones (and anti-androgens if applicable) some weeks (typically 6- 8) before surgery. Patients may also require various items to be prescribed prior to their GRS for use in the early post-op period; typical requirements include Betadine Vaginal Gel. Betadine VC (douche), and KY Jelly. At the time of writing, availability of GRS on the NHS is very limited, and varies from region to region. Some patients have succeeded in obtaining it by vigorously challenging their Health Authority's refusal to fund, in court if need be. Courts have ruled that a blanket refusal to fund gender reassignment is unlawful and cases must be considered on their merits. In some cases patients have received useful assistance from Community Health Councils and the TS rights campaigning group Press for Change are also involved in the funding debate. Further details are available in the booklet Sex Reassignment Surgery – A patient’s Guide available from The Gender Trust (£2.50). Care of Post-Operative Patients
As with any agonadal subject, some form of hormone replacement must be undertaken for life, if major problems such as osteoporosis are to be avoided. A post-op TS patient will require some form of oestrogen, which may be administered orally or by skin patches (or, much less commonly, by depot injections). Topical oestrogens (such as vaginal creams) are insufficient on their own for agonadal subjects, but may be useful as an adjunct to oral HRT. Progestrogens are not necessary for physical health in a post-op TS, but many post- ops find them beneficial psychologically, and if the patient is still feminising then the usual benefits of progestrogen therapy (particularly in breast size and texture) will be obtained. Routine blood tests should be continued indefinitely. Many penile (or peno-scrotal) inversion vaginoplasty patients report significant benefits from using a vaginal oestrogen cream (e.g. Ortho-Dienoestrol). Benefits include a moister vagina, better sensitivity, and less soreness. Nightly application should certainly suffice, and many patients require less frequent application. Patients should be advised to douche (with plain warm water or very dilute vinegar) to remove the cream base, which is heavy and tends to remain in the vagina long after the oestrogen has been absorbed. Extensive surgery in the genital area inevitably brings a considerable risk of post-operative infection; anecdotal reports from post-op subjects suggest that more than 50% of patients experience at least one post-operative infection, although most are easily treated with antibiotics. The patient should have been made aware by the surgeon of the need for scrupulous hygiene, and should also have been told of the warning signs of an infection (pain and swelling, fever, discharge from suture lines etc). When an infection is present or suspected, normal practice is treatment with antibiotics. Augmentin or ciprofloxacin are commonly-used broad-spectrum antibiotics in such cases, usually accompanied by metronidazole to eliminate the possibility of infection by anaerobes. Patients who have undergone vaginoplasty will probably also require certain routine prescriptions either on a short-term basis or indefinitely, to enable them to maintain the proper regime of hygiene and dilation. Typical requirements include Betadine Vaginal Gel (usually short-term), Betadine VC (douche), and KY Jelly. Conflicting advice is often heard on the subject of douching for inversion vaginoplasty patients. Frequent douching with Betadine solution (as well as using Betadine gel) is certainly advisable during the recovery period, but it is probably best to discontinue it in the longer term, unless the patient develops a vaginal infection, as prolonged use of such preparations will prevent the normal population of vaginal flora from developing. To maintain cleanliness, occasional douching with plain warm water is quite sufficient; some patients report benefit from using spirit vinegar diluted about 10:1 with warm water as this helps to maintain the correct pH in the vagina, and can bring relief from itching and discomfort. Like any other woman, a post-op transsexual patient may occasionally suffer from a variety of genito-urinary infections, of which the most common seems to be candidiasis (thrush). Any such infections are treated in the same manner as for a normal female patient. Patients should be made aware that they have essentially the same risk of contracting an STD (including HIV) as any other woman, and should practise 'safe sex'. Due to the complexity of GRS, post-surgical complications are relatively frequent. The majority are relatively minor and appear immediately after surgery, and would normally be dealt with by the GRS team before the patient leaves hospital. For penile (or peno-scrotal) inversion vaginoplasty, there is some risk of a partial or complete prolapse of the vaginal lining. The risk appears to rise with the proportion of scrotal tissue used to line the vagina, but is also affected by the patient's general health and particularly her age and weight: an elderly, overweight subject will be at much greater risk than a young fit person. Vaginal prolapses in TS subjects seem to occur in two distinct populations: in 'early prolapse' the prolapse generally occurs 1-3 months post-op, and is caused by the vaginal lining failing to attach itself firmly to the pelvic floor muscles as healing proceeds; once the absorbable sutures used inside the vagina break up, the lining prolapses. 'Late prolapse' is seen more often in long term post-op subjects, typically 3 years or more post-op, and the underlying cause is less clear. Any significant prolapse will require surgical repair; the technique required is somewhat different to that used in natural-born women and the patient should be referred to a surgeon experienced with post-op transsexual patients - preferably the surgeon who originally performed the GRS. After any form of vaginoplasty, a fistula may form, most commonly between the vagina and rectum. This would require surgical correction. Problems of the urethra may also occur; typically, excessive scar tissue formation causing difficulty in urinating. Such cases can sometimes be resolved by stretching the urethra with stents, more severe cases may require surgical revision. In general, post-GRS complications should be referred to an
experienced GRS surgeon, as techniques applicable to natural-born women are frequently unsuitable for transsexual patients. A very large variety of problems have been seen in colovaginoplasty patients, and expert advice should generally be sought in such cases. One common problem for such patients is painful spasm of the grafted piece of colon during or after intercourse. Some success has been reported using loperamide in such cases, although very often the problem seems to persist. In addition to routine blood tests, other screening procedures are routinely offered to women of appropriate age groups, most notably checks for breast and cervical cancer. In general, it is appropriate to treat a post-op TS in the same way as a natural-born woman of the same age group, in terms of routine health checks. Breast cancer is a risk for transsexual women, and they should be screened in the usual way and advised on self examination. There is some debate regarding cervical screening: in general, it appears that the opinion in the UK is that it is not necessary for a post-op TS, while in the USA it is standard practice. The argument against screening is that a post-op TS does not possess normal cervical tissue, her vagina is closed at the apex by a piece of penile or scrotal material (or grafted skin) for an inversion vaginoplasty patient, or colonic tissue for a colovaginoplasty patient; and that these tissues do not exhibit the same behaviour as cervical tissue. Adherents of screening for transsexual individuals argue that even though the tissues are not the same, there is theoretically some risk of cancer developing, and a smear test could detect such cancers at an early stage. The present authors are not aware of any clinical data regarding the incidence of such cancers or the efficacy of a smear test in diagnosing them. Periodic health checks which include an assessment of the patient's weight may require a little caution. A typical transsexual person who developed as a phenotypic male to adulthood will usually have a 'male skeleton', a much larger bone structure than would be typical of a woman of the same height; therefore a weight that might be considered excessive on a natural-born woman may be acceptable on a transsexual woman, if such a weight would be acceptable for a male. It would also be appropriate to mention psychological health issues. All the while the legal system and society in general continues to discriminate against transsexual people, it is inevitable that some will suffer stress-related problems, depressive disorders, etc. as a result. Such patients should be treated with understanding; because a patient presents with stress or depression after gender reassignment does not mean that she was not truly TS, or should not have been reassigned. Counselling and/or psychotherapy are generally preferable to psychoactive medications unless there is a documented physiological basis for the problem. This information sheet is based on the paper ‘Gender dysphoria: A Medical Overview’ published by The Looking Glass Society in 1998. This information sheet is distributed by the Gender Trust, with thanks to The Looking Glass Society, and is intended as a basis for information only. The Gender Trust does not accept responsibility for the accuracy of any information contained in this sheet. For further information on Gender Dysphoria and the work of The Gender Trust, contact: The Gender Trust, PO Box 3192, Brighton BN1 3WR. Tel: 01243 234024 The Gender Trust is a UK charity which specifically helps anyone who is affected by gender identity issues including partners, families, employers and professionals.
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