dAISy Sept 2001

Nomination period is now open and closes at 5pm on the 10^th October 2001. If an election is needed for a particular position, voting will take place at the AGM. Postal ballots and proxy forms will be made available upon request to members who cannot attend the AGM. All postal ballots must be returned by 5 pm, Monday 12^th of November 2001.

Please note: This election is open to current members of the AIS Support Group Australia only as outlined in our rules of incorporation. Please contact the AISSG Australia for a membership form.

I urge as many of you as possible to nominate for any of the above positions and to actively participate in our support group.

AISSG Australia Membership Fees.

In order to increase membership in the last 18 months, the AIS Support Group Australia maintained the membership fee at an unsustainable $10 until August 2001. This resulted in individual members contributing considerable personal funds to keep the support group in operation.

From August 2001, the yearly membership fee is $20. As fees are now due from most members, membership forms have been circulated with this issue of dAISy. Please note that fees include the subscription to dAISy and access to our support, information and advocacy services including our national support group meetings.

National AISSG Australia Meeting in Brisbane.

The AIS Support Group Australia made a commitment last year to have two annual national meetings, with one of them being held out of Victoria. Brisbane was identified as having the greatest number of members, so we held a meeting/workshop there in May this year. The meeting was a huge success and signified the continuation of an important era in the life of the AIS Support Group Australia.

The participation was very good in terms of overall numbers, the different sub-groups represented (i.e. parents & affected people, various levels of androgen sensitivity, gender and age) and the ability of the group to openly discuss issues, concerns and experiences in a safe, confidential, friendly, supportive, sensitive and understanding environment. The diversity of attendees ensured that discussions of the widest possible number of issues took place. The support group hopes that such good attendance continues as this provides the best possible opportunity to ensure that members’ needs are represented. Most participants expressed their approval of the inclusive nature of the support group and the ease with which people felt able to openly contribute in discussions.

Following my introduction and brief outline of the history of the support group and our achievements, the meeting focused on members sharing personal stories about the way their lives have been affected by AIS or similar conditions. It was emphasised that there was no pressure for people to participate, although people willingly took the opportunity to share their experiences with others who can relate to their issues. Stories included details of:

· experiences with going to school and dealing with peers in childhood, adolescence and early childhood when you have AIS,

· feelings associated with not menstruating like other girls for females with AIS,

· feelings associated with having breasts and not having typical genitalia for boys with AIS,

· doctors refusing to put people in contact with others with AIS, even when asked by older adolescents and parents,

· difficulties in making choices for children with AIS - especially when the “big picture” isn’t explained and doctors place some urgency on making a decision regarding gonadectomies,

· the need for parents to learn of the support group as soon as a child is diagnosed as having AIS or a related intersex condition,

· the possible strain on the family and on the parent’s relationship when dealing with a child with AIS or a similar condition,

· lack of knowledge or research on the timing of gonadectomies and the relationship it has with bone mineral density and body image,

· lack of knowledge or research on hormone therapies for people with AIS and similar conditions (both oestrogen and testosterone therapy)

· the poor manner in which some parents are treated when a newborn is diagnosed with AIS or similar condition,

· lack of knowledge by the medical profession in general on AIS and other intersex conditions,

· parents telling family and friends that their young baby's sex was incorrectly determined at birth, and that they are in fact of the opposite sex,

· the expense of treatments like oestrogen, testosterone & Fosomax, and the inability to obtain DHT for males with AIS and

· thanks and praise for Garry Warne’s book on CAIS and a need for a booklet on PAIS.

There are a lot of issues within these stories that are more complex, but the points listed are the more common ones. Many people later commented how relaxed and comfortable they felt discussing their stories and experiences in front of a group of people who could understand their personal experiences. A comment from a woman with CAIS on the follow-up questionnaire was “it has been an excellent opportunity to share anecdotes and feelings in such a friendly environment”.

Two Directors of Paediatric Endocrinology attended the support group meeting and contributed enormously to the weekend. Dr Andrew Cotterill from the Mater Children’s Hospital (Brisbane) gave an excellent presentation on AIS, and answered many questions about genetics, timing of gonadectomies, management of children with CAIS and PAIS (for both males and females), hormone therapies (oestrogen and testosterone), bone mineral density and research. Dr Cotterill also spoke of the difficult “grey areas” in the clinical management of children with PAIS, and the importance of the role of the support group in the education of doctors and other medical professionals.

Dr Jennifer Batch from the Royal Children’s Hospital (Brisbane) attended the meeting on the Sunday and provided the perfect opportunity for people to ask questions arising from the first day of the meeting. The discussion topics were similar to those discussed on the Saturday, but did focus more on hormone therapy, bone mineral density and surgical intervention.

The contributions of these doctors were much appreciated by all who attended, with several people commenting that it was the first time doctors provided answers to the more difficult questions.

Andie Hider (the Secretary of the AIS Support Group Australia), is the official intersex community representative on the Royal Children’s Hospital Melbourne bioethics study. She gave a brief outline of the intended purpose of both the ethical and genetic aspects of the study and then Tony and Andie invited discussion about ethical concerns with the following points being raised by members present:

· Can explain things better, with written material, videos, contact with the support group

· “Trump Card” issue with surgical intervention being used to silence some legitimate concerns raised by parents about the intended treatment regime.

· The speed at which a decision is asked for and the fact that parents felt “pushed” in a certain direction as opposed to having options presented

· Speaking about people in the third person and overheard conversations between doctors/nurses about the person concerned.

· Difficulties with pharmacists requesting information as to why a young woman was taking oestrogen, scripts not being filled, comments about “your mother will have to sign for this herself”

· Language in reports and medical records. For example – “F” (female in quotation marks)

· Medical Students being present in the examination room (this issue was discussed at length by all present and agreed that the best approach is that medical students be outside of the consultation room when the regular clinician asks parents and young people for permission for medical students to be present during consultations and/or examinations and that they should be told that they have the right to say no. As a result of the discussion of this issue, the AIS Support Group Australia has adopted this suggestion as our official position about this type of request.)

The feedback from all participants was very positive. Several have indicated that they will attend the next meeting in Melbourne, and it is important that as many other parents as possible be given the opportunity to attend meetings. To this end, several members from Queensland are going to try to raise money so that they can help parents who are unable to attend meetings due to financial constraints. It is encouraging to see members taking such initiatives that will allow the support group to continue to grow to support, represent and be inclusive of as many people as possible.

Several older members speculated about how their lives would have differed had they been able to access a support group when they were younger. The general consensus was that the role of the support group is a very important one in learning, understanding and coming to terms with AIS. This sentiment was reinforced by comments from the evaluation questionnaire like “the meeting was well presented, informative and helped in my self-discovery” (written by a woman with CAIS).

It was also agreed by all present that parents should have access to the support group as soon as possible, which reiterates the established policies of the AIS Support Group Australia.

The contributions of Drs Cotterill and Batch were very informative, honest and well received. The support group is genuinely interested in working with the medical profession to provide world’s best practice in the treatment of children (and families) with AIS. This was clearly seen at this meeting. The meeting was a good opportunity for the AIS Support Group Australia to continue to work and liaise with and educate leaders within the medical community to improve their understanding and treatment of people with AIS and similar intersex conditions and their parents. The doctors themselves acknowledged the importance, strength and inclusiveness of our support group.

A Sex Therapist may have been of benefit to several members who raised issues relating to difficulties with sexual intimacy. The support group will invite a sex therapist to the next meeting for those interested in a “get down and dirty” sexual issues session.

The AIS Support Group Australia is well positioned to continue to provide support and information to people with AIS and similar conditions, as well as liaising with the medical profession about our needs and treatment. Our membership is continuing to increase, primarily due to our website and newsletter “dAISy”, and it is hoped that more doctors will provide the contact details of the AIS Support Group Australia to the people in their care.

I would like to personally thank all of those who attended the meeting (including those who came from interstate and overseas), Phoebe for her work in bringing it all together and Drs Cotterill and Batch for their valuable contributions. I am very much looking forward to our November meeting.

Recommended Clinicians…

The AISSG Australia receives requests from anxious people (with various intersex conditions or their parents) seeking recommended clinicians from all over the world. The most recent requests have included people from the US, Philippines, India and Spain. These people are generally seeking sympathetic, understanding and knowledgeable Endocrinologists, Gynaecologists or Urologists, but often they just need a medical professional that is willing to help.

Consequently, the AIS Support Group Australia is seeking doctors who are willing to be included in our recommended clinicians database from anywhere in the world. If you are a doctor and would like to be included in our database, please contact the AISSG Australia with your contact details, location, and area of expertise.

If support group members and supporters have a doctor they would also like included in this database, please ask your doctor for approval before giving us their contact details.

Lost and Found!

When I set off for Brisbane to attend the May meeting it was still dark as I boarded first a bus, then the train to Melbourne and Skybus to the airport. I must have been in a bit of a dither as somewhere in the departure area I lost my very special multifocal tinted spectacles. As I took my window seat on the 'plane I discovered the loss and weaved my way to the steward at the entrance to tell them that if they were found I would pick them up in Lost Property on the way back. Vain hope! Spending two days without being able to read was fairly daunting so on my way to the motel I found a pharmacy and bought some readymade "readers".

What's all this got to do with the events that followed I can hear you say?

Well, I suppose it has all got to do with 'seeing' in a broader
sense. Walking each day (for those bones you know!) I get a chance to reflect on how much help all my friends in this marvellous organisation of ours have given me. After each meeting of the group I become aware of how important it is to have a safe space just like this in which to sort oneself out. All those negative questions regarding difference that one has harboured over a lifetime can be brought out into the open and put into their proper perspective. That word again!

So as I look back to 1996 when I first became aware that there was actually a name and a reason for my condition I know how much I have grown in self-confidence, always a step at a time; it's an ongoing process. And so I say a huge 'thankyou' to all those in the medical profession that have informed me, and to my friends who have confided in me and allowed me to tell my story. To the marvellously open and friendly people in Brisbane my grateful thanks and especially to Phoebe for organising it. What fantastic lunches we had! Without Tony and Andie without whose hard work nothing would happen, much gratitude.

If you are someone who is hesitating about attending an AISSGA meeting I can only say be courageous and come to the meeting in November.

By the way I never found my 'specs,but I did find something far more valuable - friends and a real sense of who I am.

Good Afternoon, Good Evening and Goodnight

Those of you who profess (or admit) to being movie aficionados, may recognise the title of this article as being from the Truman Show. They are our heroes final words as he departs the make believe world in which he has lived his entire life thus far, to face the unknown of the real world. Whilst I would seldom turn to the wisdom of Hollywood to provide the answers to life’s questions (although Peter Sellers ironic performance in “Being There” is a classic example of doing just that), I did see similarities between Mr Truman’s identification of the lie he had been living and his eventual liberation and the lives of many of us that will read this.

Expectations and the pressures they impose upon us, can lead us to play dangerous games with ourselves and others. If we really examine our lives, we have each of us done something because it was expected of us, sometimes with no more apparent damage than feeling slightly pressured but sometimes with much more dire circumstances. We have lived up to expectations as people with intersex conditions, as parents of children or adults with intersex conditions and as members of the specialist medical profession. Like Mr Truman of the Truman Show, we have all at some stage “performed for the cameras”.

I “performed for the cameras” for a great many years of my life. Some of these performances did little or no harm to me, but on balance the overall effect has been to eventually lead me to bang my fists against that painted backdrop that I once believed to be the horizon, eventually to find the door to the real world on the other side. As Mr Truman prepares to leave his artificial world, he is told he is the inspiration for millions of people and that the person who has orchestrated his existence to this point, knows him better than he knows himself. There are many out there that would make such claims of each of us, they know us better than we know ourselves or that we provide some reassurance for others because of the lies we live. They are, of course, very wrong both in their assumptions and their expectations. The life we each make for ourselves, must be of our own choosing where we can possibly do this. Where we do otherwise, we are performing for the cameras of someone else and even if in doing so we think we will help them, in the end they too suffer for it. The longer we do this the more we all suffer.

Sometimes it hurts to walk through the door to the real world, often there is a price to be paid. Standing looking at the little sign that reads “Exit”, it can feel as though we could never ever walk through to the other side, that rather than a single step we are trying to cross a vast canyon. What we need is a bridge. For me, that bridge is the people that make up our support group. They have provided a way into the real world not only for me, but for my family and friends as well. In “performing for the cameras” I had unwittingly hurt my family and friends, perhaps not at the time but certainly later when they realised that I had been suffering in silence in an attempt to somehow spare them any pain. My bridge has been the knowledge that others have done the same, that they too sought to protect others or a way of life by the sort of brilliant performances that would put the best actor’s performance to shame. There is no audience like real life to test our appearance on stage. In the end it is still just a great show nothing more, the real personality of our actor a mystery behind their award winning performance. In the end the curtain must fall and does.

One of the greatest gifts I have ever received, was the chance to share in the lives of others who have been through much that I have, particularly someone whose life has been almost a mirror image of mine. We each played our part on a different side of the mirror, until one day the mirror shattered and we found ourselves standing face to face our performances fine for all but each other, one actor recognising another for who and what they were. Our lives as actors slowly drew to a close.

As for our careers as actors, well, we will still remember them through our own memories and those of our family and friends and the lessons we have all learned. For now though, good afternoon, good evening and goodnight, a new life in the real world awaits.

Graham’s Pain.

Foster Care.

By Tony Briffa

As some of you may know, I have been a foster parent for the last 4 years and have a 9-year-old child currently in my full-time care. A few support group members have asked for more information on foster care, so I thought I would include some information in dAISy.

Foster care is not like adoption; its main aim is to reunite children with their families. It is therefore very important for these children to have regular contact with their own biological families. Foster families need to be able to share the children with their biological families and help them understand why they are unable to live at home. Ways children and their families can keep in contact include telephone calls and letters.

It is important for children in care to have their parents play a continuing role in their lives. This is especially important in working toward the time when the child returns home and the family is reunited. One of the foster carer's roles as part of the team is to help maintain contact between children and their parents.

Training
Training of foster carers is essential so issues and concerns affecting the child, the family and the carers are shared and understood by all members of the team. Training is usually provided by the Foster Care organisation the carer goes through.

Support for Carers
Always remember that there is a lot of support offered in sharing the care of the child. This involves the foster care agency, and sometimes the Department of Human Services and the biological family. Carers are not expected to know all the answers about foster care, which is why ongoing support is necessary for all foster carers.

Types of foster care
There are many different categories to describe the types of foster care. They include:

· Temporary foster care
You may hear the words 'temporary care' used instead of short or long term care because of the difficulty of putting a time on some placements.

· Long term foster care
Can be up to two years or longer. Some children may find themselves in foster care longer than this. Children can be placed back with their family even after very long periods in care.

All sorts of people in many different types of relationships can be foster parents. Both 'traditional' and 'non traditional' families may foster with great success. Families may be:

One essential quality for all foster carers however, is to be willing to help and care for children and to be able to move on when the child goes back to their biological family.

All family members are involved in fostering and it is important to think about your values and what feels right for you and your family.

I won’t dare suggest that foster care is for everyone, or that it is easy work, but it can be very rewarding. The most difficult experiences I have had have involved children returning to their families, or not having the legal rights as a “normal” parent. Having said that, it has given my family and I an opportunity to help a child and their family, and has given me the opportunity to be a parent; something I am not able to do naturally.

· Foster Care Association of WA Inc: (08) 9388 1911, or 1800 641 911, email admin@fcawa.com.au

Exposing (My) Intersexness – Full Monty

When I recently returned briefly to Australia, I was idly looking through the persynal in Sydney’s lesbian magazine (as you do) and saw an ad that seemed to be calling to me.

I’m XY of course, but I figured I was about as close as this womyn was likely to get in Sydney. And why XX? So I wrote to her and asked. It turned out that she was trying to express a desire for an intersex womyn, assigned and socialised female, lesbian identified (that’s me!).

We met, and during my time in Sydney PJ and I became (non-erotic) friends. We had some great discussions about gender and sexuality, and she helped me access a number of (mostly academic) resources on queer theory / gender / sexuality. She also came with me (the night we first met) to Girlesque, Sydney’s fortnightly lesbian strip-club.

My feminist politics had me in doubt about the healthiness and political positivity of a lesbian strip club, and I made no effort to go to either the one in London, or in San Francisco. Some friends talked about the impoverishedness of lesbian culture and lesbian imagery (particularly overtly sexual images made by ‘ourselves’), and of freeing our (o/re)pressed sexual expression. I was still uncomfortable with the idea of sexual objectification, and of mixing sex and money. But I was convinced to go see for myself.

The experience was mixed for me. I very much enjoyed: the spontaneous strip of two excited ‘straight’, ‘normal’-looking dykes; a funny and awkward performance by an obvious amateur (cellulite included and highlighted); and a performance by an older ex-pro stripper. And I was fascinated by the tension and conflict that developed at the end of the night between the MC and an audience member. I was also more than uncomfortable seeing the stereotypically ‘attractive’ professional seeming strippers (including co-option and exoticisation of Indigenous American culture/imagery) and left to sit in the front bar during most of those.

Somehow, from that experience, I decided I wanted to do an act at Girlesque, theoretically to deconstruct and expose some of the underlying issues I considered to be important- commodifying sexuality; objectification, and how glamour aids that; privileging of certain body types, particularly hetero-patriarchal glorified ones.

I booked myself in for the first available which was about a month ahead, and just before I was due to fly out on my way for some genderpirate-style Central American travelling.

I planned a seams-and-all, self-reflective, spoken word piece: basically talking about myself, my feelings and my experiences of my body while taking off my every-day clothes. With my medically treated intersex body and experiences, the idea turned into a ‘coming-out’ piece.

I have come a long way since my adolescent shame about my body, particularly my ‘telling’ abdominal scar (from an exploratory operation at 10 months old and my testectomy at 10 y.o.). And I’ve also come a way towards pride, particularly since finding out the truths about my body and its stories. But I am affected by that unwanted gift of the sense that there’s something fundamentally wrong with me and my body. There isn’t. And my mind pushes me forward on the journey towards feeling that- more deeply and subconsciously.

Still, during the weeks before, I wondered at my own bravada and chutzpah, telling myself it was possible to drop out before it actually happened. But by then I’d told enough people to feel responsible in case they turned up.

I should mention that I’m fairly accustomed to performing and am generally a self-confident speaker. Actually, the night before in the very same venue, I was involved in two separate musical performances.

Anyway, I did it. Eventually the time came, I hadn’t backed out or freaked out. I got up on stage in my shorts and shirt, picked up the microphone, paused as I had planned…

“I could talk about my body as a text, something that can be read and interpreted…” I started with three semi-prepared sentences, which I’d hoped would help to focus the attention (the audience’s and mine).

“…But I’m not going to, because unlike a text, my body has feelings…” I started talking about myself, improvising (my name, my age etc.) and undoing my shirt buttons, perfunctorily and non-seductively. I felt surprisingly calm. The room was quiet.

I soon started waffling with unpreparedness about this or that- some other scars, the shape of my breasts and how an old girlfriend had painted them in a portrait, my hairless underarms. I was down to my underpants (my favourites), sensing I was waffling. I paused.

“I’m not a professional stripper (in case you didn’t realise)”.
Ripple of laughter. I think by then I was already running my finger along my abdominal scar. I took off my underpants and I started talking about my operations and my chromosomes.

“When I was born, my mother thought she had a beautiful, healthy baby girl. Then when I was six months old, a nurse decided my clitoris looked a bit large, and they sent me to the doctors for tests…”

I would have preferred not to focus so much on my medicalisation, but because of my nervousness and time limit that’s mostly what I ended up talking about.

“…I’m an intersex persyn, which is someone not either clearly female, or clearly male…”

I wanted to finish without losing the flow, but I hadn’t thought ahead to this point. I faltered…

“So I don’t know if it’s appropriate for me to perform at a lesbian strip club.”

They clapped, I picked up my clothes, got dressed in the dressing room and went to the front bar for some space and a beer.

As I ordered, the tears started. I sat and cried for about fifteen minutes, interrupted once by compliments from an audience member, and once by a badly timed, well-intentioned ex-girlfriend. Some of you might be able to imagine some of the complex reasons for my tears

· mourning many things (that I am different, that I spent so long not realising how/why, that I had/have to work so hard to just to feel okay about myself, for all the time I’ve been twisted in knots unneccessarily)

· fear (of what might happen now, with my friends, with the lesbian community- potential friends, lovers etc; or even for what might not happen).

I got numerous compliments, congratulations and thanks that night (and an offer to go out dancing: I wasn’t up to it, and took the womyn’s phone number instead). How much was sympathy, guilt or supportiveness is impossible to know, and actually isn’t that important to me. I did it, not perfect, not painless, but it was another big step in empowerment and shifting the pattern of shame, guilt and self-doubt.

Removal of the Gonads to Prevent Neoplasia in Patients with Gonadal Dysgenesis and AIS.

Streak gonads (the small, elongated and relatively undifferentiated gonads found in gonadal dysgenesis) commonly undergo malignant change. Gonadoblastoma ( a pre-malignant condition) occurs in 55% of gonads in partial XY gonadal dysgenesis and in 30–66% of gonads of females with complete XY gonadal dysgenesis. I have seen a child who had gonadoblastoma present on both sides at birth. In a gonadoblastoma, discrete nests of germ cells are found mixed with sex cord derivatives, with prominent focal calcification. When invasive changes are also seen, the tumour is called a dysgerminoma and this is a true cancer that can kill. The better-differentiated testis in partial XY GD is also very prone to dysgerminoma (= seminoma); it is here that intratubular germ cell neoplasia (IGCN; carcinoma-in-situ) has been described as a premalignant stage in the development of a dysgerminoma. ICGN is characterised by prominent filling of seminiferous tubules (the tubes in which sperm are normally made) with large characteristic cells. There is no question at all that streak gonads should be excised without delay and hormone replacement therapy commenced when the person reaches the age when puberty would be appropriate (for example, at age 11—12 years). A putative gonadoblastoma gene locus has been mapped to a small region on the long arm of the Y chromosome. Other studies suggest the possibility of multiple susceptibility loci on the Y chromosome.

Provided the uterus is structurally normal, there is no reason why an XY female with complete GD should not be offered the opportunity of a pregnancy using ovum donation and in vitro fertilization, even if her own gonads have been removed. One XY woman has had two successful pregnancies this way, but required Caesarean section because of failed cervical dilatation in labour.

If the patient with XY gonadal dysgenesis is growing up male, the temptation will be to ignore the risk of cancer and leave the testes in place. It is then essential that there be a protocol of clinical examinations and specialized tests to prevent cancer. This would involve (1) removing streak gonads at the time of diagnosis, (2) surgically removing a small sample of testicular tissue ( a biopsy) during childhood and again after the onset of puberty for examination under the microscope by a skilled pathologist. Apart from that, the patient would need to see a doctor every 6 months for an examination of the testes. Ultrasound is a useful adjunct to palpation of the testis. It needs to be clearly understood that there is always a significant risk of cancer for boys with gonadal dysgenesis whose testes have been retained and that follow up is for life.

In CAIS, lifetime risk of seminoma (invasive cancer) is estimated to be 9% but the risk before puberty is negligible. Bilateral orchidectomy is widely recommended before the age of 20. There are two schools of thought about the timing of orchidectomy. According to one, it is safe to leave the testes in until after breast development has been completed. The other school contends that removal of the testes in early childhood is better because the parents can be reassured that there is no longer any risk of malignancy, and there is no need to involve the girl in the uncomfortable decision about having her gonads removed. The evidence is equivocal. In the opinion of the author, it is preferable to defer removal of the testes until after puberty, because the girl can then participate in the important decision about her own body. This assumes that she has been fully informed about all aspects of the diagnosis well before this time, and that she has access to skilled counselling. This is a relatively new policy for us in Melbourne and some girls with CAIS have had their testes removed as small children.

There are some other practicalities to consider if the testes are to be left in until after puberty. Usually the testes are located in a superficial and exposed position in the girl’s groin area, where they may be easily knocked during sport or other physical activities. This is less of a problem for men because the testes hang lower in the scrotum and are not able to be compressed against the abdominal wall. It is not safe to surgically relocate the testes to a position inside the abdomen because there, they cannot be observed for the development of lumps that could be cancer.

My Mother Groan’d, my father wept;

Into the dangerous world I leapt,

Helpless, naked, piping loud,

Like a fiend hid in a cloud.

Struggling in my father’s hands,

Striving against my swadling-bands,

Bound and weary, I thought best

To sulk upon my mother’s breast.

When I saw that rage was vain,

And to sulk would nothing gain,

Turning many a trick and wile

I began to soothe and smile.

And I sooth’d day after day,

Till upon the ground I stray;

And I smil’d night after night,

Seeking only for delight.

- “Infant Sorrow” by William Blake.

Timing of Gonadectomies in People with AIS..

It is very frustrating - and interesting - to read medical papers about the timing of gonadectomies in people with AIS. Clinicians tend to concentrate solely on those with Complete AIS with total ambivalence to those of us with some response to androgens; moreover, they assume that the gender identity of everyone with AIS is female and that the risk of cancer is too great to justify retaining the testes.

Several months ago when we started compiling this issue of dAISy, the AIS Support Group Australia invited a number of medical professionals to write openly about the various arguments on the timing of gonadectomies in people with AIS and similar intersex conditions. Of all the clinicians invited, only Garry Warne was kind enough to submit an article. The rest pretty much looked to Garry for his expertise about this controversial issue. Whilst I am very grateful to Garry for his contribution, his article focused only on those with CAIS and Gonadal Dysgenesis. The problem it seems is that there really is no one willing to stand up and give their opinion on what should happen for those in the grey zone - PAIS.

Any thorough discussion on the timing of gonadectomies in people with AIS should include:

The risk of gonadal cancer in AIS with internal testes (not all those with AIS have their testes located internally) is only 9% post puberty. Before that time, the risks are negligible. For those post puberty, a yearly blood test can determine how the testes are performing and whether or not they are developing a cancer. We have women in the Support Group who have "slipped through the net" as children and adolescents and have decided to keep their testes. They receive annual blood tests and are happy with their treatment. (They also happen to have a very understanding and progressive doctor). There is also anecdotal evidence that suggests the peak bone mineral density in these women has been higher for longer than those who have gonadectomies closely following puberty.

One also wonders what the urgency for surgery is when the risk of cancer is only 9% after puberty? Why are parents being convinced to approve gonadectomies without understanding the full picture? I have heard time and time again from parents telling me that they agreed to their child’s gonadectomy because they were told the "gonads were cancerous". I will briefly talk about the legal implications at the end of this article, but the human rights implication is an obvious issue for both the parents and the young child with AIS.

I have heard an argument put forward by some medical professionals that gonadectomies are required in the event of a misdiagnosis. One well known endocrinologist even said that gonadectomies in children with AIS is necessary because the patient may actually have gonadal dysgenesis in which case the risk of cancer is much higher. This is quite simply not good enough. There are tests available to ensure that a child does not have dysgenic testes. As those most often called upon to diagnose and comment about intersex conditions, endocrinologists should have no doubt as to their patient’s diagnosis. Wider education of the general medical community should also reinforce the need for referral to an appropriate specialist to ensure accurate diagnosis of intersex conditions. All avenues possible should be pursued to ensure that the child does not have an increased risk of gonadal cancer. Given an accurate diagnosis of CAIS or PAIS, we know the risk is no greater than 9% after puberty. To most, this does not warrant the early removal of gonadectomies, but the issue should be one of fully informed consent regardless of the risk.

There is irrefutable proof to support the need of sex hormones to develop and maintain one’s bone mineral density and that the period of early adolescence is vital for life-long healthy bones. Once a gonadectomy is performed, the child no longer has the ability to produce their own sex hormones like other children, making them dependant on hormone treatment for the rest of their lives. Teenagers in particular have great difficulties in complying with hormone therapy, which usually involves daily oestrogen tablets for girls and fortnightly testosterone injections for boys. For girls with complete AIS or who have little response to androgens, any gonadectomy performed pre-puberty has robbed from them the opportunity of naturally developing their own feminine figure, breasts etc without the use of hormone therapy.

For girls with more sensitivity to androgens, retaining their testes may result in some masculinisation like facial hair and a deeper voice. It may also cause feminising effects. These effects will occur during puberty. This may cause great concern to those who identify as female, and highlights the need for open communication and trust between the parents, the endocrinologist and the child. It is hoped that any clinical management of a child with AIS will include counselling and this is of particular importance during adolescence. If a child is clearly concerned with any masculinising effects, then an endocrinologist should take steps to stop these changes occurring. The child should be told everything about their condition that will enable them make a fully informed decision on their future treatment. All options should be explained to the adolescent and their parents including hormone treatments and gonadectomy.

It is vital that boys with AIS retain their testes unless there is some medical need to have them removed. Removal of the testes in boys is essentially castration rather than a gonadectomy. Boys with AIS will go through hardship if they experience gynaemastia and little virilisation, but fully informed consent and psychological support for treatments like chest reconstruction is vital. The use of Dihydrotestosterone (DHT), which cannot be aromatised into oestrogen, should also be explored along with annual blood tests checking the condition of the testes.

The most controversial and difficult issue when dealing with gonadectomies (and people with intersex conditions in general) is the child’s true gender. Gender should be based purely on the child’s identity of themselves which they will usually know by the time they are 12, but often occurs even earlier. The simple fact is that no one can determine the gender of a child with AIS (or other intersex conditions) other than the child themselves. Doctors can make an educated guess based on experience, but many mistakes have happened all over the world including here in Australia. Some of the doctors involved are renowned as experts in the field, but like anyone else they are not infallible. Given that doctors cannot determine a child’s gender, why are they still potentially castrating little boys with AIS?

I know many people with AIS that deeply regret having ever had gonadectomies. Most identify as female, but some also identify as male or intersex. The one thing most of these people feel is violation of their human rights and their right to self integrity. These people were not asked whether they want to have their testes removed. They were never told what the implications were. Many weren’t even told that the gonads that were removed were in fact testes. In some cases, these surgeries have negatively impacted on the relationship between the child and their parents, but for the most part parents weren’t even told what they were "consenting" to.

I am at a loss to understand why the medical community continues to remove the healthy testes of children with AIS given all that I have described in this article. Doctors have heard the horror stories of those that are not satisfied with the way they were treated, but they continue to focus on those that are happy. They refuse to address the issue of gonadectomies in children with Partial AIS by constantly arguing in support of gonadectomies in children with Complete AIS (an argument that is still flawed at best).

Another issue that might be considered are the potential legal implications of removing healthy organs without a person’s consent. It is one thing to ask parents to make a decision on behalf of their child when they fully understand all of the current and future implications, quite another to consent when they are not aware of many of the points raised in this article. One specialist recently commented to a member of the support group, that she was surprised no parents of an intersex child had yet sued the medical profession upon later learning of the implications of a decision they had been asked to make on behalf of their child, without fully understanding what they were doing. Whilst she did not believe legal action would necessarily help resolve any of these issues, she still felt it was a matter of concern.

I have endeavoured to include all of the positive and negative sides of the argument for the timing of gonadectomies and I can’t think of any other reasons supporting the early removal of testes in children with AIS. Basically, the arguments for early gonadectomies are:

· the child may later be lost to follow up allowing a person with a potentially high cancer risk to not seek medical treatment

· the risk of gonadal cancer post puberty is only 9% which can be monitored for by yearly blood tests and other means as explained in Prof. Warne's article on Gonadal Dysgenesis,

· bone mineral density benefits of retaining testes (including the removal of the risk of non-compliance with hormone therapies),

· body image benefits of retaining testes (especially in girls with low sensitivity to androgens and boys with AIS),

· removal of the risk of castrating males with AIS (as one cannot determine the gender of the child, the removal of the testes may potentially equate to the castration of a male child).

In my particular case, I was born with descended testes that didn’t even have the 9% risk of cancer post puberty. They were very healthy and because my body did respond to androgens I was born with a smaller than average penis, nevertheless doctors still decided to surgically and hormonally make me look like a female. They also tried very hard to make me identify as a female by lying to me for years and preventing me from having the testosterone treatment I need. None of these efforts did anything to change my own feeling of who I was nor influenced my self identity.

I urge doctors to think about the issues in this article very carefully and hope that we can work together to establish better treatment guidelines for people with AIS and similar intersex conditions and their families.

I invite any endocrinologist to reply to the concerns raised in this article, and promise it will be published in its entirety without editorial changes.

Royal Children's Hospital Melbourne Bio-Ethics Study Update

Most of our support group members would be aware that the Royal Children's Hospital (RCH) Melbourne, has undertaken a bio-ethics study which involves a long term follow up of children born with intersex conditions who have received surgical alteration of the genitalia as part of their treatment. The study is also examining ethical issues of general concern to those with intersex conditions and involves a genetic research component.

At our Brisbane meeting earlier this year, I gave a brief outline of the study to date and Tony and I asked members for their points of view about treatment practices they believed appropriate or otherwise based on their own experience having been the subject of such treatment. As always, secrecy and lack of information featured highly amongst members concerns, but the list of ethical issues raised and discussed at this meeting was both varied and substantial. The resulting list of concerns has since been given to the co-ordinator of the RCH bio-ethics study and other medical groups considered appropriate. In response to concerns raised about the genetic research component of the bio-ethics study, we have invited Dr Andrew Sinclair to write an article for the newsletter that addresses these concerns.

The AIS Support Group Australia and other support groups for those with intersex conditions have been involved at a consultative level with formulating direction of the study and such things as initial approach to former patients. This last point is of particular concern, as many patients approached will have been treated when standard practice was to withhold the truth from the patient about their condition. It is obviously of paramount importance to establish just how much a person knows of their treatment history and condition prior to approaching them to take part in the study.

Much work to be done between members of the support group and the RCH study co-ordinator is to balance what can at times be competing interests. AIS Support Group Australia members and members of other support groups have voiced concerns regarding both the direction of the study and potential outcomes. Of particular concern is that former patients should be approached and interviewed by medical professionals not previously involved in their treatment. Those patients established to have been told little or nothing about their condition, would then be advised of the true nature of their condition in an environment with the appropriate support. Initially this was established to be the best approach, but we have since been told that “doctors with an aspect of care for patients to make the initial approach and be available to answer any questions that might be asked”. We are particularly concerned about this development as it effectively places a large degree of control over who will and will not get a say in the study in the hands of those about whom comments as to the appropriateness of treatment will be made. It will also mean that patients will be aware their clinician has been involved in the process which might make them reluctant to voice any concerns about thei

President’s Welcome!

Elections and AGM.