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Gender dysphoria — a treatable condition in mainstream medicine

Sara-Jane Cromwell, CEO of Gender Identity Disorder Ireland, defines the condition of and treatments for gender identity disorder.

Gender identity disorder (GID)/gender dysphoria is a little known but much misunderstood congenital intersex condition, which is clinically diagnosable and treatable. The growing body of evidence points to GID being neurobiological in nature and has nothing whatever to do with fetishistic compulsions or lifestyle choice, with which it has been too long associated.

As a clinically diagnosable and treatable condition, there is a need for a much greater level of intervention from health service providers as a whole, and certain disciplines in particular; i.e. GPs, consultant psychiatrists, clinical psychologists, endocrinologists, counsellors and psychotherapists.

As of the time of writing, there is a dearth of healthcare professionals available for patients with GID. This means that many seeking diagnosis and/or follow-on treatment are left in a medical limbo.

The idea for this article came as the result of a conversation I had with my endocrinologist about two years ago. I had been telling him of my intentions to establish a new national support organisation for people with GID and that the organisation would be called Gender Identity Disorder Ireland (GIDI). I had also updated him on the developments towards the upcoming medical symposium on GID, which was subsequently held in the Mansion House, Dublin, last February.

Much to my amazement, he expressed his delight and appreciation for the fact that there would now be an organisation that called the condition by its proper name, and that a distinction was finally being made in the minds of the public — and the health services in particular — between this clinical condition and the various fetishistic compulsions and lifestyles to which GID has been too long and wrongly associated.

Great difficulties

My endocrinologist went on to explain the great difficulties he had in getting his colleagues to engage with patients diagnosed with GID. Their objections seemed to stem from their misperceptions regarding GID being a lifestyle issue rather than being medical in nature, and therefore felt the provision of hormone treatments to be inappropriate.

It is fair to say that taken on face value, this seems like an entirely appropriate and responsible position to take. However it has already been demonstrated that this position is based upon a misperception as to the true nature and aetiology of the condition. This situation is being remedied, especially in light of the recognition of the condition by both the HSE and the Department of Health and Children.

A lack of access to healthcare professionals and adequate medical care has created a vacuum into which a significant number of patients and others desperately seeking help have fallen. They find themselves in a state of distress and despair, with many feeling suicidal. Others become so desperate they resort to self-diagnosing and self-medicating. And this is just the beginning for those who find themselves in this situation.

These difficulties are very grave indeed and an immediate response is required from health service providers. The vacuum created by the lack of healthcare for GID patients is also the result of a wrong association being made between people diagnosed with GID and those who engage in sexual fetishes.

Amongst this latter group are extreme fantasists, who self medicate on hormones simply to satisfy a very strong fantasy to grow breasts. This creates an intolerable situation for genuine patients and it only serves to reinforce the negative cultural prejudices towards those who struggle with their condition.

I will give a brief definition and description of gender identity disorder along with an insight into the treatments used. However I shall not go into any exhaustive detail and instead I refer the reader to the IMJ article entitled ‘Gender Identity Disorder in Ireland’, published in May 2006.

This article is an excellent starting point for those who wish to bring themselves up to speed regarding the more technical aspects of the treatments provided.

I have included a copy of the actual treatment and referral pathways recommended to the HSE from the Working Group on Gender Identity Disorder (see Figure 2). This group was made up of representatives of the HSE, Department of Health and Children, the Equality Authority, Gender Identity Disorder Ireland and others. One of the goals of this group was to have GID brought into mainstream healthcare. The symposium held last February went a long way towards achieving this goal; it is hoped that articles such as this and those being published elsewhere will further this goal for the sake of all concerned.

Definition and description

GID is a congenital intersex condition which leaves the individual with a psychological gender identity at odds with their physical sex and gender indicators. One of the simplest ways of explaining it is that the person feels themselves to be a female when their body, and gonads in particular, indicate that they are male, e.g. male to female (MtF) and vice-versa.

Because of this, gender identity disorder was perceived as a mental disorder and was treated as such (see ICD-10 and the DSM IV)1,2. However, in recent times, the growing body of evidence indicates that the condition is neurobiological in nature and as such should no longer be classified as a mental disorder (IMJ, May, 2006)3. This is a welcome development and is long overdue.

There is now evidence that shows the problem to be located within the area of the brain known as the sexual dimorphic nucleus along the third ventricle of the hypothalamus and the bed nucleus of the striae terminalis (See Figure 1).
The numbers affected are thought to be 1:30,000 in male to female and 1:120,000 for female to male. However these figures need to be treated with caution as they are subject to change in light of greater awareness and the numbers presenting for diagnosis.

Diagnosis and treatment

A diagnosis of GID is made by a clinical psychologist or consultant psychiatrist. Every diagnosis follows a number of evaluations during which all possible alternative explanations have been explored and ruled out.

Every initial diagnosis must be confirmed by at least another consultant psychiatrist or clinical psychologist. This is essential before hormone treatment commences. Once a diagnosis has been confirmed, a decision is made on whether to proceed with full gender reassignment.

At this stage, reference should be made to the Harry Benjamin International Gender Dysphoria Association Standards of Care (HBGDA)5¸ which is the internationally recognised standard of care for people with gender identity disorder. Once the decision has been made to proceed with gender reassignment, the patient is then referred on to an endocrinologist to commence hormone treatment.

However, treatment cannot commence where there are significant contra-indications, i.e. serious health concerns (e.g. potential pulmonary and vascular disease, liver problems etc) where the risk to the patient’s health runs a higher risk in the event of commencing hormone treatment. Other concerns are diabetes, smoking etc.

Full gender reassignment includes commencing hormone treatment and going through the Real Life Experience (Test) (RLE), which involves changing one’s social gender role. Once the Real Life Experience has reached the required period, the patient is then referred on for consideration for genital realignment surgery (GRS).
This surgery, along with some forms of corrective surgery, are typically carried out within the UK, or in some cases further abroad. Generally speaking, the results tend to be extremely positive with high levels of satisfaction amongst post-GRS patients.
It must be pointed out here that these positive results normally follow from the provision of the appropriate medical interventions throughout the reassignment process. Where there are no appropriate interventions in place, the outcomes can be considerably less successful and can even be life threatening.

Surgeries and treatments

As mentioned above, many people with GID opt for partial or complete gender realignment surgery. This can include the following surgeries:

Male gender realignment surgery
* Penectomy (removal of the penis);
* Orchidectomy (removal of testes);
* Clitoroplasty (construction of the clitoris);
* Breast augmentation (increased breast size);
* Rhinoplasty (reshaping the nose);
* Corrective surgeries, e.g. facial remodelling, hair transplants;
* Thyroid chondroplasty (shaving of the Adam’s apple);
* Crico-thyroid approximation and anterior commisure advancement.

Female realignment surgery

• Hysterectomy and ophorectomy (removal of uterus and ovaries);
• Bilateral mastectomy (breast removal);
• Phalloplasty (construction of a penis).

Before surgery can take place, the patient is referred to an endocrinologist to commence hormone treatment. Before hormone treatment can commence, however, numerous blood tests have to be taken in order to ensure that the patient is in sufficient good health to enable them commence the treatment.

These tests include existing hormone levels, liver function, lymphocytes, calcium etc.
The list is quite extensive and very necessary. Treatment starts gradually, building up oestrogens in the body, for male-to-female and testos-terone for female-to-male. Once the patient is adapting well to the new hormones, the dosage is increased to a level consistent to that of normal levels in biological females and males.

At some stage during of the treatment process, the male-to-female patient is placed on anti-androgens such as Androcur and Zoladex. Zoladex is administered by injection through the stomach. Anti-androgens reduce the presence of the male hormones and are used prior to genital realignment surgery.

They also affect the libido, which for some can be a high price to pay. However, patients who choose to proceed do so knowing the probable effects on their libido.
While on hormone treatment, the patient can go through many emotional swings, until their body adapts to the new hormones. There is also the potential for other side effects such as blood clots forming, which requires taking Aspirin on a daily basis.

Most traumatic aspect

What is by far the most traumatic aspect of treatment (including gender realignment surgery) for the patient is beginning their Real Life Experience (Test) (RLE)¸ in which they are required to change their social gender role for a period of at least two years (though this may vary in some cases).

It is this experience that often determines whether patients will transition successfully towards their new gender role and from there go on to live a normal, happy and functional life. Some patients opt not to complete their treatment and choose instead to settle for partial gender reassignment.

This option does cause some surprise and concern, but what it also does is point to the complexity that surrounds the treatment process and the wider influences which families, friends, work colleagues and communities can have on the decisions that are made by this patient group. The reality for patients going through the Real Life Experience is invariably negative for the most part. There are very few patients who can attest to having a trouble-free Real Life Experience.

Accessing healthcare

As difficult as it is (and it is difficult) to find a qualified practitioner for the purpose of providing a diagnosis and referral, matters become even more difficult when it comes to accessing treatment from a local GP.

General practitioners play a vital role in the ongoing monitoring of patients throughout the reassignment process and they can make a very significant difference to the overall outcome of the treatment process.

It is especially difficult to find local endocrinologists who will provide the necessary hormone treatment and ongoing monitoring of this stage of the reassignment process, which is absolutely essential to enabling the patient to achieve the best possible outcome.

As things stand, the vast majority of those seeking diagnosis and treatment must travel to Dublin from most parts of the country. It also causes overload to those practitioners already overburdened with their existing caseloads.

Desperate for medical assistance

It should be unacceptable to all health service providers that any patient group should be so desperate for medical assistance that they would resort to self-diagnosis and self-medicating. The principle of ‘do no harm’ should of course be upheld where there is a risk of causing harm through inappropriate interventions. However, there is the risk of equal or even greater harm caused by not providing any form of intervention.

In fairness to healthcare professionals, there is an argument to be made insofar as GID has traditionally been associated with terms such as transsexualism, transgenderism, etc. These terms are rightly associated with fetishistic lifestyles and sexual compulsions, but emphatically not with gender identity disorder.

These terms were dropped by the ICD-10 and DSM-IV TSR in 1980 and 1996 respectively, precisely because they were considered to be no longer appropriate for this particular clinical condition. Their continued use should not be a basis or justification for not engaging with patients presenting with GID.

It should be clear however, even at this stage, that gender identity disorder is a clinically diagnosable intersex condition and that it has nothing whatever to do with the terms mentioned above. This should remove this particular barrier for healthcare professionals and enable them to engage with this patient group.

The author is aware of a number of cases involving self-diagnosis and self-medication, and cases in which patients have funded their own surgery abroad, without any local support at home when they return. There have been some horrific examples of why self-diagnosis and self-medicating is something that must be tackled by the availability of greater resources, and in particular a larger contingent of practitioners within the specific disciplines, and at local level.

For example, I can cite the case of one individual who travelled abroad to Thailand on holidays, and while there, came across a hospital that carried out genital realignment surgery. This patient decided to go through with it; she did this without any prior formal diagnosis, real-life experience or hormone treatment.

Support service

To make matters worse, this individual arrived back in this country, offering a support service to very vulnerable people desperately in need of help and willing to take it from anyone who offers it. This is an extreme example of the kind of reckless endangerment that occurs in the absence of appropriate medical interventions.

Another example to cite is of a patient, who though she was diagnosed with GID, opted to bypass the Real Life Experience and instead travelled abroad for surgery, but without informing any of her family, friends etc.

On her return, she could not understand why she was greeted with hostility and rejection and that there were no support systems in place. To make matters worse, she experienced some very serious medical complications which required hospitalisation and psychiatric care.

The patient very nearly died from the complications, which also presented the attending medical team with problems with which they had no previous experience of dealing.

Added to these types of cases are the many individuals who reach such a low point after waiting a long time to finally get diagnosed, and just as long to start their hormone treatment, that they purchase their hormones online and self-medicate.
Some of these patients become utterly disillusioned and subsequently fall out of the system altogether, and are effectively abandoned to their fate.

The primary reason identified for this was the lack of engagement from healthcare professionals. However there are reasons to be hopeful as the situation is begins to change.

Apart from organising the medical symposium already mentioned, the Working Group on GID also had the task of developing a suitable referral and treatment pathway for patients diagnosed with the condition. The diagram (right) is the pathway that has been presented for consideration by HSE management.

Developments

One of the most significant developments to occur in recent times is that the HSE and Department of Health and Children both recognise gender identity disorder as a clinically diagnosable and treatable condition.

The HSE also provides funding for surgeries and other related treatments carried out in the United Kingdom. They, along with the Department of Health and Children and the Equality Authority, co-sponsored the medical symposium held in the Mansion House in February 2008.

They have both made commitments to look at how best to put the appropriate resources in place and how best to provide more locally based services. Further, the Minister for Health and Children, Ms Mary Harney TD, gave her endorsement of this recognition and was also in attendance at the symposium.

In her opening address to the symposium, she made it clear that gender identity disorder is the preferred term for the condition and this is how it is to be known going forward. This is a genuine milestone for all those affected by GID and those concerned with providing healthcare to this patient group.

In the meantime, more articles like this need to be published in order to inform professionals on the ground, that they have nothing to fear by engaging with this patient group.

Conclusions

This article has attempted to address a number of the key issues surrounding the current difficulties for patients with GID gaining access to appropriate healthcare. It gives a definition and description of its nature, diagnosis and treatment options. It addressed the issue of the reluctance of many within the health service generally to engage with this particular patient group.

It identified that one of the principle reasons for this was a general lack of information and awareness about the condition and the wrongful associations between it and a number of fetishistic lifestyles, along with the confusion and difficulties caused by using inappropriate terminology.

It also addressed some of the key concerns which healthcare providers have and the reassurances to be had from the HSE’s and Department of Health and Children’s recognition of the condition.

The article looks at how a vacuum has been created into which numbers of this patient group find themselves unable to cope, with some resorting to taking extreme measures rather than continue living their lives in the wrong gender roles, e.g. self-diagnosis, self-medication and seeking surgery abroad without local supports being in place on their return, thus demonstrating that it is imperative for healthcare professionals to engage with this patient group as a matter of urgency.

It looks at some of the current landmark developments that are taking place in this area and the steps that are being taken in order to identify as many local resources as possible and to bring them together under an agreed and identifiable referral and treatment pathway.

However, it has to be pointed out that this is going to take time; but, there is absolutely no reason or justification as to why health service providers cannot even now provide their services to this patient group on a more proactive basis.

Finally, gender identity disorder is a clinically diagnosable and treatable condition and as such belongs within mainstream medicine and healthcare provision. Those presenting for diagnosis and treatment deserve to be treated with the same dignity and respect as that afforded to any other patient group provided for within our health service.

Gender identity disorder (GID)/gender dysphoria is a little known but much misunderstood congenital intersex condition, which is clinically diagnosable and treatable. The growing body of evidence points to GID being neurobiological in nature and has nothing whatever to do with fetishistic compulsions or lifestyle choice, with which it has been too long associated.

1. World Health Organization 1992: International classification of Diseases-10 Edition.
2. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.
3. Dr Cillian De Gascun: Gender Identity Disorder in Ireland, Irish Medical Journal, May, 2006.
4. A Sex Difference in the Human Brain and its Relation to Trans-sexuality, J.-N. Zhou, M.A. Hofman, L.J. Gooren and D.F. Swaab.
5. The Harry Benjamin Gender Dysphoria Association’s Standards of Care for Gender Identity Disorders, sixth Version, February, 2001.
6. Dr Cillian De Gascun: Gender Identity Disorder in Ireland, Irish Medical Journal, May, 2006.

Sara-Jane Cromwell is the founder and CEO of Gender Identity Disorder Ireland.

Posted in Mental Health & CNS on 30 March 2009
Tags: surgery

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abortion, accupuncture, ACE inhibitors, acne, ADHD, alcohol, allergies, Alzheimer's, anaemia, anaethesia, anorexia, antibiotics, antidepressants, antihistamine, anxiety, appetite control, arthritis, ASCOT, aspirin, asthma, atherosclerosis, autism, autoantibodies, back pain, beta carotene, beta-blockers, bipolar disorder, birth, bleeding, blindness, blood pressure, body dysmorphic disorder, body mass, breast cancer, breast feeding, bronchitis, Caesarean section, calcium, cancer, carcinogens, carcinoma, cardiac syncope, cardiolgy, cataracts, cervical cancer, chemotherapy, child psychiatry, children, cholesterol, clinical trial, clopidogrel, Clostridium difficile, cognitive behavioural therapy, colectomy, colic, colorectal cancer, complementary and alternative therapies, contraception, COPD, coronary care, coronary stents, Crohn's, cystic fibrosis, defibrillator, dementia, depression, dermatology, diabetes management, diet, disability, DNA, Down's syndrome, eating disorders, echinacea, ECT, eczema, elderly people, endoscopy, epilepsy, erectile dysfunction, euthanasia, exercise, fat, fertility, fitness, flu pandemic, fluoxetine, folic acid, food labelling, fracture, fragile X syndrome, general surgery, genetics, gerontology, GIK infusion therapy, GORD, gout, haemodialysis, hearing, heart attack, heart disease, heart failure, heart health, hepatitis, HIV, hospital care, HPV, HRT, hyperglycaemia, hypertension, hypoglycaemia, IBD, ICU, incontinence, infant, infant mortality, infection, inflammatory bowel disease, influenza, invasive candidiasis, IQ, Irish Heart Foundation, irritable bowel syndrome, keyhole surgery, kidney disease, laser, learning difficulties, leukaemia, liver disease, lumbar disk herniation, lung cancer, lung disease, lymph nodes, macular degeneration, macular oedema, magnetic resonance imaging (MRI), malaria, malnutrition, Marfan syndrome, media, medical ethics, medical research, medication, meningitis, mental illness, metabolic syndrome, migraine, miscarriage, mortality rate, MRSA, multiple sclerosis (MS), NCHDs, nephrology, neurology, OAB, obesity, obstetrics, occupational health, ocular medicine, omega-3, opthalmology, oral cancer, organ transplantation, orthopaedics, osteoporosis, otolaryngology, ovarian cancer, paediatrics, pain management, pancreatic cancer, panic, Parkinson’s disease, patient safety, patient-physician communication, personality disorders, physiotherapy, plastic surgery, polio, practice, pre-eclampsia, pregnancy, preventative health care, probiotics, prostate cancer, psoriasis, psychiatric admission, psychiatry, psychotherapy, PTSD, public health, quality of life, radiology, radiotherapy, rectal cancer, reproductive health, research, resuscitation, rheumatoid arthritis, rheumatology, rhinitis, salt, SARS, schizophrenia, screening, seizures, self harm, sexual abuse, sexual health, sexually transmitted infections, SGA, sinusitis, skin cancer, sleep disorders, smoking, smoking ban, spinal injury, sports medicine, statins, stress, stroke, substance abuse, suicide, supplement, surgery, syncope, technology, teenagers, testosterone, thoracic surgery, thrombosis, thyroid cancer, tonsillectomy, tonsillitis, Tourette's syndrome, toxicology, travel medicine, tuberculosis, tumour angiogenesis, type 1 diabetes, type 2 diabetes, ulcer, ulcerative colitis, urinary incontinence, vaccine, vitamins, weight, WHO, women's health, World Health Assembly

«Previous article | Next article»

Gender dysphoria — a treatable condition in mainstream medicine

Sara-Jane Cromwell, CEO of Gender Identity Disorder Ireland, defines the condition of and treatments for gender identity disorder.

Gender identity disorder (GID)/gender dysphoria is a little known but much misunderstood congenital intersex condition, which is clinically diagnosable and treatable. The growing body of evidence points to GID being neurobiological in nature and has nothing whatever to do with fetishistic compulsions or lifestyle choice, with which it has been too long associated.

As a clinically diagnosable and treatable condition, there is a need for a much greater level of intervention from health service providers as a whole, and certain disciplines in particular; i.e. GPs, consultant psychiatrists, clinical psychologists, endocrinologists, counsellors and psychotherapists.

As of the time of writing, there is a dearth of healthcare professionals available for patients with GID. This means that many seeking diagnosis and/or follow-on treatment are left in a medical limbo.

The idea for this article came as the result of a conversation I had with my endocrinologist about two years ago. I had been telling him of my intentions to establish a new national support organisation for people with GID and that the organisation would be called Gender Identity Disorder Ireland (GIDI). I had also updated him on the developments towards the upcoming medical symposium on GID, which was subsequently held in the Mansion House, Dublin, last February.

Much to my amazement, he expressed his delight and appreciation for the fact that there would now be an organisation that called the condition by its proper name, and that a distinction was finally being made in the minds of the public — and the health services in particular — between this clinical condition and the various fetishistic compulsions and lifestyles to which GID has been too long and wrongly associated.

Great difficulties

My endocrinologist went on to explain the great difficulties he had in getting his colleagues to engage with patients diagnosed with GID. Their objections seemed to stem from their misperceptions regarding GID being a lifestyle issue rather than being medical in nature, and therefore felt the provision of hormone treatments to be inappropriate.

It is fair to say that taken on face value, this seems like an entirely appropriate and responsible position to take. However it has already been demonstrated that this position is based upon a misperception as to the true nature and aetiology of the condition. This situation is being remedied, especially in light of the recognition of the condition by both the HSE and the Department of Health and Children.

A lack of access to healthcare professionals and adequate medical care has created a vacuum into which a significant number of patients and others desperately seeking help have fallen. They find themselves in a state of distress and despair, with many feeling suicidal. Others become so desperate they resort to self-diagnosing and self-medicating. And this is just the beginning for those who find themselves in this situation.

These difficulties are very grave indeed and an immediate response is required from health service providers. The vacuum created by the lack of healthcare for GID patients is also the result of a wrong association being made between people diagnosed with GID and those who engage in sexual fetishes.

Amongst this latter group are extreme fantasists, who self medicate on hormones simply to satisfy a very strong fantasy to grow breasts. This creates an intolerable situation for genuine patients and it only serves to reinforce the negative cultural prejudices towards those who struggle with their condition.

I will give a brief definition and description of gender identity disorder along with an insight into the treatments used. However I shall not go into any exhaustive detail and instead I refer the reader to the IMJ article entitled ‘Gender Identity Disorder in Ireland’, published in May 2006.

This article is an excellent starting point for those who wish to bring themselves up to speed regarding the more technical aspects of the treatments provided.

I have included a copy of the actual treatment and referral pathways recommended to the HSE from the Working Group on Gender Identity Disorder (see Figure 2). This group was made up of representatives of the HSE, Department of Health and Children, the Equality Authority, Gender Identity Disorder Ireland and others. One of the goals of this group was to have GID brought into mainstream healthcare. The symposium held last February went a long way towards achieving this goal; it is hoped that articles such as this and those being published elsewhere will further this goal for the sake of all concerned.

Definition and description

GID is a congenital intersex condition which leaves the individual with a psychological gender identity at odds with their physical sex and gender indicators. One of the simplest ways of explaining it is that the person feels themselves to be a female when their body, and gonads in particular, indicate that they are male, e.g. male to female (MtF) and vice-versa.

Because of this, gender identity disorder was perceived as a mental disorder and was treated as such (see ICD-10 and the DSM IV)1,2. However, in recent times, the growing body of evidence indicates that the condition is neurobiological in nature and as such should no longer be classified as a mental disorder (IMJ, May, 2006)3. This is a welcome development and is long overdue.

There is now evidence that shows the problem to be located within the area of the brain known as the sexual dimorphic nucleus along the third ventricle of the hypothalamus and the bed nucleus of the striae terminalis (See Figure 1).
The numbers affected are thought to be 1:30,000 in male to female and 1:120,000 for female to male. However these figures need to be treated with caution as they are subject to change in light of greater awareness and the numbers presenting for diagnosis.

Diagnosis and treatment

A diagnosis of GID is made by a clinical psychologist or consultant psychiatrist. Every diagnosis follows a number of evaluations during which all possible alternative explanations have been explored and ruled out.

Every initial diagnosis must be confirmed by at least another consultant psychiatrist or clinical psychologist. This is essential before hormone treatment commences. Once a diagnosis has been confirmed, a decision is made on whether to proceed with full gender reassignment.

At this stage, reference should be made to the Harry Benjamin International Gender Dysphoria Association Standards of Care (HBGDA)5¸ which is the internationally recognised standard of care for people with gender identity disorder. Once the decision has been made to proceed with gender reassignment, the patient is then referred on to an endocrinologist to commence hormone treatment.

However, treatment cannot commence where there are significant contra-indications, i.e. serious health concerns (e.g. potential pulmonary and vascular disease, liver problems etc) where the risk to the patient’s health runs a higher risk in the event of commencing hormone treatment. Other concerns are diabetes, smoking etc.

Full gender reassignment includes commencing hormone treatment and going through the Real Life Experience (Test) (RLE), which involves changing one’s social gender role. Once the Real Life Experience has reached the required period, the patient is then referred on for consideration for genital realignment surgery (GRS).
This surgery, along with some forms of corrective surgery, are typically carried out within the UK, or in some cases further abroad. Generally speaking, the results tend to be extremely positive with high levels of satisfaction amongst post-GRS patients.
It must be pointed out here that these positive results normally follow from the provision of the appropriate medical interventions throughout the reassignment process. Where there are no appropriate interventions in place, the outcomes can be considerably less successful and can even be life threatening.

Surgeries and treatments

As mentioned above, many people with GID opt for partial or complete gender realignment surgery. This can include the following surgeries:

Male gender realignment surgery
* Penectomy (removal of the penis);
* Orchidectomy (removal of testes);
* Clitoroplasty (construction of the clitoris);
* Breast augmentation (increased breast size);
* Rhinoplasty (reshaping the nose);
* Corrective surgeries, e.g. facial remodelling, hair transplants;
* Thyroid chondroplasty (shaving of the Adam’s apple);
* Crico-thyroid approximation and anterior commisure advancement.

Female realignment surgery

• Hysterectomy and ophorectomy (removal of uterus and ovaries);
• Bilateral mastectomy (breast removal);
• Phalloplasty (construction of a penis).

Before surgery can take place, the patient is referred to an endocrinologist to commence hormone treatment. Before hormone treatment can commence, however, numerous blood tests have to be taken in order to ensure that the patient is in sufficient good health to enable them commence the treatment.

These tests include existing hormone levels, liver function, lymphocytes, calcium etc.
The list is quite extensive and very necessary. Treatment starts gradually, building up oestrogens in the body, for male-to-female and testos-terone for female-to-male. Once the patient is adapting well to the new hormones, the dosage is increased to a level consistent to that of normal levels in biological females and males.

At some stage during of the treatment process, the male-to-female patient is placed on anti-androgens such as Androcur and Zoladex. Zoladex is administered by injection through the stomach. Anti-androgens reduce the presence of the male hormones and are used prior to genital realignment surgery.

They also affect the libido, which for some can be a high price to pay. However, patients who choose to proceed do so knowing the probable effects on their libido.
While on hormone treatment, the patient can go through many emotional swings, until their body adapts to the new hormones. There is also the potential for other side effects such as blood clots forming, which requires taking Aspirin on a daily basis.

Most traumatic aspect

What is by far the most traumatic aspect of treatment (including gender realignment surgery) for the patient is beginning their Real Life Experience (Test) (RLE)¸ in which they are required to change their social gender role for a period of at least two years (though this may vary in some cases).

It is this experience that often determines whether patients will transition successfully towards their new gender role and from there go on to live a normal, happy and functional life. Some patients opt not to complete their treatment and choose instead to settle for partial gender reassignment.

This option does cause some surprise and concern, but what it also does is point to the complexity that surrounds the treatment process and the wider influences which families, friends, work colleagues and communities can have on the decisions that are made by this patient group. The reality for patients going through the Real Life Experience is invariably negative for the most part. There are very few patients who can attest to having a trouble-free Real Life Experience.

Accessing healthcare

As difficult as it is (and it is difficult) to find a qualified practitioner for the purpose of providing a diagnosis and referral, matters become even more difficult when it comes to accessing treatment from a local GP.

General practitioners play a vital role in the ongoing monitoring of patients throughout the reassignment process and they can make a very significant difference to the overall outcome of the treatment process.

It is especially difficult to find local endocrinologists who will provide the necessary hormone treatment and ongoing monitoring of this stage of the reassignment process, which is absolutely essential to enabling the patient to achieve the best possible outcome.

As things stand, the vast majority of those seeking diagnosis and treatment must travel to Dublin from most parts of the country. It also causes overload to those practitioners already overburdened with their existing caseloads.

Desperate for medical assistance

It should be unacceptable to all health service providers that any patient group should be so desperate for medical assistance that they would resort to self-diagnosis and self-medicating. The principle of ‘do no harm’ should of course be upheld where there is a risk of causing harm through inappropriate interventions. However, there is the risk of equal or even greater harm caused by not providing any form of intervention.

In fairness to healthcare professionals, there is an argument to be made insofar as GID has traditionally been associated with terms such as transsexualism, transgenderism, etc. These terms are rightly associated with fetishistic lifestyles and sexual compulsions, but emphatically not with gender identity disorder.

These terms were dropped by the ICD-10 and DSM-IV TSR in 1980 and 1996 respectively, precisely because they were considered to be no longer appropriate for this particular clinical condition. Their continued use should not be a basis or justification for not engaging with patients presenting with GID.

It should be clear however, even at this stage, that gender identity disorder is a clinically diagnosable intersex condition and that it has nothing whatever to do with the terms mentioned above. This should remove this particular barrier for healthcare professionals and enable them to engage with this patient group.

The author is aware of a number of cases involving self-diagnosis and self-medication, and cases in which patients have funded their own surgery abroad, without any local support at home when they return. There have been some horrific examples of why self-diagnosis and self-medicating is something that must be tackled by the availability of greater resources, and in particular a larger contingent of practitioners within the specific disciplines, and at local level.

For example, I can cite the case of one individual who travelled abroad to Thailand on holidays, and while there, came across a hospital that carried out genital realignment surgery. This patient decided to go through with it; she did this without any prior formal diagnosis, real-life experience or hormone treatment.

Support service

To make matters worse, this individual arrived back in this country, offering a support service to very vulnerable people desperately in need of help and willing to take it from anyone who offers it. This is an extreme example of the kind of reckless endangerment that occurs in the absence of appropriate medical interventions.

Another example to cite is of a patient, who though she was diagnosed with GID, opted to bypass the Real Life Experience and instead travelled abroad for surgery, but without informing any of her family, friends etc.

On her return, she could not understand why she was greeted with hostility and rejection and that there were no support systems in place. To make matters worse, she experienced some very serious medical complications which required hospitalisation and psychiatric care.

The patient very nearly died from the complications, which also presented the attending medical team with problems with which they had no previous experience of dealing.

Added to these types of cases are the many individuals who reach such a low point after waiting a long time to finally get diagnosed, and just as long to start their hormone treatment, that they purchase their hormones online and self-medicate.
Some of these patients become utterly disillusioned and subsequently fall out of the system altogether, and are effectively abandoned to their fate.

The primary reason identified for this was the lack of engagement from healthcare professionals. However there are reasons to be hopeful as the situation is begins to change.

Apart from organising the medical symposium already mentioned, the Working Group on GID also had the task of developing a suitable referral and treatment pathway for patients diagnosed with the condition. The diagram (right) is the pathway that has been presented for consideration by HSE management.

Developments

One of the most significant developments to occur in recent times is that the HSE and Department of Health and Children both recognise gender identity disorder as a clinically diagnosable and treatable condition.

The HSE also provides funding for surgeries and other related treatments carried out in the United Kingdom. They, along with the Department of Health and Children and the Equality Authority, co-sponsored the medical symposium held in the Mansion House in February 2008.

They have both made commitments to look at how best to put the appropriate resources in place and how best to provide more locally based services. Further, the Minister for Health and Children, Ms Mary Harney TD, gave her endorsement of this recognition and was also in attendance at the symposium.

In her opening address to the symposium, she made it clear that gender identity disorder is the preferred term for the condition and this is how it is to be known going forward. This is a genuine milestone for all those affected by GID and those concerned with providing healthcare to this patient group.

In the meantime, more articles like this need to be published in order to inform professionals on the ground, that they have nothing to fear by engaging with this patient group.

Conclusions

This article has attempted to address a number of the key issues surrounding the current difficulties for patients with GID gaining access to appropriate healthcare. It gives a definition and description of its nature, diagnosis and treatment options. It addressed the issue of the reluctance of many within the health service generally to engage with this particular patient group.

It identified that one of the principle reasons for this was a general lack of information and awareness about the condition and the wrongful associations between it and a number of fetishistic lifestyles, along with the confusion and difficulties caused by using inappropriate terminology.

It also addressed some of the key concerns which healthcare providers have and the reassurances to be had from the HSE’s and Department of Health and Children’s recognition of the condition.

The article looks at how a vacuum has been created into which numbers of this patient group find themselves unable to cope, with some resorting to taking extreme measures rather than continue living their lives in the wrong gender roles, e.g. self-diagnosis, self-medication and seeking surgery abroad without local supports being in place on their return, thus demonstrating that it is imperative for healthcare professionals to engage with this patient group as a matter of urgency.

It looks at some of the current landmark developments that are taking place in this area and the steps that are being taken in order to identify as many local resources as possible and to bring them together under an agreed and identifiable referral and treatment pathway.

However, it has to be pointed out that this is going to take time; but, there is absolutely no reason or justification as to why health service providers cannot even now provide their services to this patient group on a more proactive basis.

Finally, gender identity disorder is a clinically diagnosable and treatable condition and as such belongs within mainstream medicine and healthcare provision. Those presenting for diagnosis and treatment deserve to be treated with the same dignity and respect as that afforded to any other patient group provided for within our health service.

Gender identity disorder (GID)/gender dysphoria is a little known but much misunderstood congenital intersex condition, which is clinically diagnosable and treatable. The growing body of evidence points to GID being neurobiological in nature and has nothing whatever to do with fetishistic compulsions or lifestyle choice, with which it has been too long associated.

1. World Health Organization 1992: International classification of Diseases-10 Edition.
2. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.
3. Dr Cillian De Gascun: Gender Identity Disorder in Ireland, Irish Medical Journal, May, 2006.
4. A Sex Difference in the Human Brain and its Relation to Trans-sexuality, J.-N. Zhou, M.A. Hofman, L.J. Gooren and D.F. Swaab.
5. The Harry Benjamin Gender Dysphoria Association’s Standards of Care for Gender Identity Disorders, sixth Version, February, 2001.
6. Dr Cillian De Gascun: Gender Identity Disorder in Ireland, Irish Medical Journal, May, 2006.

Sara-Jane Cromwell is the founder and CEO of Gender Identity Disorder Ireland.

Posted in Mental Health & CNS on 30 March 2009
Tags: surgery