Amy Hunter

More About Trans Healthcare: Sex Reassignment Surgery: When Things Go Wrong,

Filed By Amy Hunter | July 13, 2010 9:30 AM | comments

Filed in: Living, Transgender & Intersex
Tags: American Psychiatric Association, DSM IV, DSM V, SRS, Standards of Care, WPATH

A few weeks ago, I filed an article, both here at The Bilerico Project and in Australian on-line monthly, The Scavenger. Sex Reassignment Surgery: When Things Go Wrong, received great commentary on and off-site from Scavenger and Bilerico readers.

The comments have continued to come in; a trans support group in Brisbane, Australia wrote my editor for permission to re-print the article. I have received phone calls, personal letters and e-mails from advocates, other women experiencing difficulties, and organizations that have a stake in the trans healthcare debate.

I am grateful for the well wishes sent by readers, but what heartens me most is the enhanced dialogue about trans healthcare that has transpired since the piece first posted.

Amid the response were ideas that merit closer attention.

After the jump, some points to ponder.

Why Doesn't WPATH Do More?

The World Professional Association for Transgender Health (WPATH) has done little to promote better training of surgeons and documentation of skills and procedures. WPATH, one would suppose, is the logical standard-bearer of such issues.

It is easy to bash an organization that we perceive to be ineffectual. It is also not difficult to ask an organization to do for you, what we may ultimately need to do for ourselves. Conversely, I see little evidence of WPATH's willingness to take strong positions on issues that are not inherently academic. I personally know a psychologist who resigned her membership in WPATH, precisely because she felt the organization to be elitist, academic, and that the internal debate was about things of little consequence to the transperson who still suffers.

The preamble and mission statement from WPATH's website;

The World Professional Association for Transgender Health (WPATH), formerly known as the Harry Benjamin International Gender Dysphoria Association, (HBIGDA), is a professional organization devoted to the understanding and treatment of gender identity disorders.

WPATH Mission Statement:

"As an international multidisciplinary professional Association the mission of WPATH is to promote evidence based care, education, research, advocacy, public policy and respect in transgender health."

"Hmmm...Ok. If you say so", is my reaction. While having an organization is all well and good, if it is incapable of true advocacy--What is the point?

WorldPATH, as the inheritor of Harry Benjamin's legacy, is the de facto keeper of ethical standards for trans healthcare and the body proclaiming itself responsible for furthering education and respect across medical disciplines.

So, my question becomes:

Do we, the transgender, transsexual and allied communities need a grassroots movement to push this body to promulgate truly patient-centered policy?

Transpeople Are Misrepresented in Medical Education

One reader offered the following in a letter;

Better basic-orientation training is needed in medical schools, which still teach about transsexualism as if it were an extremely rare sexualized paraphilic mental illness, creating fear and loathing in the minds of young doctors that they fall back on when encountering a trans patient in an emergency. This is clearly a factor in the unwillingness of most doctors to treat trans clients.

While not yet incontrovertible, empirical evidence is mounting that transpeople are naturally occurring in every population. Like being gay, there most likely is no "trans gene" but rather, in utero development of the brain brings about our special nature.

It is time to rid medical texts and psychology curricula of teaching abnormal psychology about transpeople. A naturally occurring segment of the population should no longer stand for pathology as a descriptor.

Hence my question:

Is it not time to force the American Psychiatric Association to do away with pathological diagnoses relating to transpeople from the Diagnostic and Statistical Manual of Mental Disorders (DSM)?

To my amusement, upon checking WPATH's website, I found this press release:

FOR IMMEDIATE RELEASE

May 26, 2010

The World Professional Association for Transgender Health has prepared and released a statement urging the de-psychopathologisation of gender variance worldwide. The statement is as follows:

The WPATH Board of Directors strongly urges the de-psychopathologisation of gender variance worldwide. The expression of gender characteristics, including identities, that are not stereotypically associated with one's assigned sex at birth is a common and culturally-diverse human phenomenon which should not be judged as inherently pathological or negative. The psychopathologlisation of gender characteristics and identities reinforces or can prompt stigma, making prejudice and discrimination more likely, rendering transgender and transsexual people more vulnerable to social and legal marginalisation and exclusion, and increasing risks to mental and physical well-being. WPATH urges governmental and medical professional organizations to review their policies and practices to eliminate stigma toward gender-variant people."

The above is an obvious jab at the American Psychiatric Association and the proposed revisions to the DSM-V.

Why not call out the APA specifically?

Misapplication of Standards of Care by Institutions and Psychologists

This is an all too familiar tale of woe and one with which I have personal experience.

Self-determination is a long-running debate among transpeople, psychologists, psychiatrists and physicians. I do not advocate removing "best practices" guidelines from decision-making attendant to hormone and surgical processes, but when these practices are applied with little regard for the unique needs of the individual, the outcomes can be less than helpful.

One Size Does not Fit All

I have disdain, verging on contempt, for "cookie-cutter" therapeutic policy. In 2007, I felt compelled to withdraw from the gender program at a large American university.

Excerpts from a letter to that institution explain why...

I have...become increasingly uncomfortable with treatment policies as administered by University of Michigan Health System-Comprehensive Gender Services. This feeling extends beyond my personal disillusionment to include an over-arching concern for the broader trans community and the effect on its members of policy-based treatment determinations.

  • Applied Wisely, WPATH Standards of Care Are a Good Thing

I personally believe that the latest Standards of Care (SoCv6) as set forth by the World Professional Association for Transgender Health (WPATH) are necessary to protect both clients and providers from making hasty or rash decisions with regard to treatment options. However, the broadly conservative interpretation and rigid manner in which CGS applies these as a matter of policy does not allow for the primary client-therapist relationship to first; Interpret suitability and readiness and subsequently; drive the application of treatment options on an individual basis.

  • Bureaucrats Should Not Be Making Your Decisions

Program administration had the 'official' date of my acceptance into the CGS program wrong leading to some big headaches.

This bureaucratic mix-up delayed the initiation of hormone therapy for me by as much as three months...The cascade action of this delay has in effect, placed the timing of the surgical phase of my therapy to, at a minimum, five months later than was strictly necessary.

  • People Not Well Versed in Trans Issues Need to Leave Decision Making to Those Who Are

At the time I was 'enrolled' in this program, a gay, white, male person with no education about transsexualism was the chief administrator. He, obviously, had not a whit of understanding of what it is like to be transsexual.

I requested that CGS rectify this (date mix-up) error. A program administrator met my request with what I felt to be a cavalier and callous attitude. He asked me why, "a couple of months were such a big deal" then, added gratuitously, "after all, you've waited this long already."

First: Without question, any CGS representative, no matter whom, simply should never treat a client in a way that may lead her or him to believe that their concerns are unwarranted.

  • Policy Undercuts the Individual

Second: Although made in an off-hand fashion, such a comment reveals an attitude that I believe permeates healthcare for transpersons, that, Policy outweighs the participatory role of the client when charting a course to successful treatment of Gender Identity Disorder and substantial relief of gender dysphoria in the individual. The potential ramifications of this institutional arrogance are much wider than they may seem with only a passing glance.

  • Imposition of Arbitrary Standards

WPATH Standards of Care call for one year living in your non-birth sex/gender before SRS. Often, programs and providers impose seemingly arbitrary 'rules' of their own.

I made inquiries to a program administrator about a pre-surgical consultation with the program surgeon. I was informed even a pre-surgical consultation would not be possible until I had completed eighteen months of real life experience.

  • Providers Need to Understand, It's Not Just About You

...my spouse and I discussed our desire as a couple, to pursue timely completion of (my) surgical treatment phase. This would enable us as a couple, to move forward with all aspects of our relationship, and allow for consolidation of my remaining physical gender inconsistencies into my newer role.

If I were to adhere to this UMHS-CGS imposed time line, inclusive of the "official" date I entered RLE, I would encounter substantial delay of my surgery. This is, in my opinion, far too long to ask either my spouse or me to "stick it out".

  • "Cookie-Cutter" Approach Is Not Good For All Transsexuals

I do not dispute the viability of SoCv6 as the basis for a sound therapeutic model. Nor do I desire preferential treatment and as such, wish to be exempt from meeting best practice standards for suitability, readiness and eligibility. I do however; question whether the abrogation of SoCv6 guidelines with additional time requirements by UMHS-CGS represents the most efficacious protocol for all cases.

  • Not Everyone Survives

Statistics on suicide place transpeople in the highest-risk group of any population. Unemployment and homelessness are epidemic in LGBT populations and particularly among adolescents. The average age that an LGBT youth becomes homeless is 13.5 years-old. How can a disadvantaged youth or adult get proper assistance if the 'system' seems stacked against them?

My personal struggle as a transsexual has taken forty-three years to near its culmination. While my story is by no means exceptional, its outcomes sadly are. Unfortunately, many others do not survive unscathed, if at all, to get to where I am today--on the verge of living as completely as possible in the solution to what has been a life-long crisis.

  • My Road has Been Difficult-and I Had it All

I am fortunate to be in good emotional, mental and physical health, and have access to excellent counseling and support groups. These, along with unwavering support from my spouse, family, friends and co-workers have allowed for better than average outcomes...

I facilitate a local support group for transgender persons, their families, and significant others. I make myself available as a public speaker and panel participant to educational institutions and community groups. My spouse and I are openly and without apology, willing to share our experience and hope with anyone in need of understanding and information.

With all this at my disposal, I have at times still felt a near overwhelming desire for my struggle to conclude--to "get on with it", if you will. Whether or not to go back has never been the question. The question has always been how to move forward on a reasonable course and within a reasonable frame of time. Again, sadly, some others in the trans community are not able to access the level of resources and support available to me. Often, a perceived roadblock or temporary setback will seem an insurmountable obstacle. It is here that many will turn to less than credible solutions to their desperateness. The outcomes of these scenarios are, in even my limited observation, usually unfavorable.


  • Compassion is Key

I urge UMHS to conduct a review of its policies attendant to the treatment and care for individuals suffering from Gender Identity Disorder. Moreover, this review should carefully consider whether those policies are honestly inclusive of the client as a partner in their own treatment, and most importantly, motivated by a true spirit of compassion.

Respectfully,
Amy L. Hunter

I did not receive a reply, or indeed, an acknowledgment of any kind from the University of Michigan--its Health System administration, or the Comprehensive Gender Services program administrators.

Withdrawing from the CGS program was not simple petulance on my part. The U of M affiliated psychologist I was seeing at the time had already written her surgical readiness letter and referred me for the required second opinion. Ironically, the administration of Comprehensive Gender Services at U of M would not have accepted my psychologists' clearance for surgery--by their administrative timetable, I had not been in the program long enough.

Many transgender and transsexual people already have a difficult road to accessing healthcare. Bureaucratic roadblocks and "one size fits all" approaches to therapeutic options increases the numbers of us left out, or worse--pushed out of the system.

Being transsexual is a complex dynamic. Those who suffer with gender dysphoria should be able to seek timely and effective remedies for their distress. This can only happen if the client is included as a full partner in the decision making process, unhampered by administrators and providers who fail to accurately understand the consequences of policy-centric rather than patient centered care.

Transpeople must not be afraid to challenge our care providers and the programs which mean to serve us. As difficult as it can be, we must be our own best advocates.
Insist on full partnership with your doctors and therapists.

A Cautionary Tale: Sex Reassignment Surgery: When Things Go Wrong

If you read the above titled piece, you know my personal story and the potential consequences one can suffer from mishandled healthcare decisions. As of this writing, there is yet another chapter to add to this story.

Just a few days ago, I underwent more corrective surgery at the University of Minnesota Medical Center in Minneapolis, Minnesota. After consultation, a team of surgeons there undertook an effort to repair the damage done from multiple fistulas and subsequent attempts to repair them. Unfortunately, the harm done during these previous attempts appears to be mostly beyond the skill of doctors to remedy.

Ill-advised procedures and post-operative infection have left my body without viable tissue capable of accepting healthy, new grafts. There is likely no possibility of ever reconstructing my vagina and it is doubtful whether I will regain control of bowel function, the muscles controlling them having been destroyed by an unnecessary incision.

I am angry -- nearly beyond words at the arrogance of the institutions and doctors to whom I entrusted my well-being. Yet, I am angry with myself also. Ultimately, I must bear the responsibility of not listening to myself, to my body, and to the warnings in the back of my mind when my doctors insisted and I knew they were wrong.

The anger will lessen with time. What I pray never fade are lessons hard won and the conviction that I have a responsibility to pass them on.

Our doctors are supposed to be professionals, but they too, are only human. In the final analysis, it is up to us to make prudent choices about our bodies and our health.

Listen to yourself and your body. Trust yourself and your instincts. Question if it doesn't make sense. Stop if you disagree.

Most importantly, never allow yourself to be treated as "less than".

Crossposted from The Scavenger, July 12, 2010.


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Amy - first, thank you for all you have shared. Often I've been told how brave or strong I am but reading what you have related in The Scavenger and above, I truly find myself in a state of admiration for you.

There is so much of what you have stated with which I identify. My own general practitioner who was willing to write scripts for me, did so based upon MY research and declined the opportunity to be enlightened any more than necessary. My file in his office contains a "standing order" for blood work which I filled out so that I could "make an appointment for blood work" any time I deemed necessary! Obtaining his training at the U of MN, he remarked he had "seen" the condition during his training. He agreed to write my scripts after an endocrinologist at U of MN had no intention of correcting the dreadfully inadequate dosages he prescribed saying "what's your hurry?" Sound a bit familiar?

As for WPATH which is here in Minneapolis, I once sent correspondence regarding some of my concerns and didn't even receive a "form letter" in reply. I was truly left wondering if they ever talk to any of us for whom they endeavor to advocate.

Amy - first, thank you for all you have shared. Often I've been told how brave or strong I am but reading what you have related in The Scavenger and above, I truly find myself in a state of admiration for you.

There is so much of what you have stated with which I identify. My own general practitioner who was willing to write scripts for me, did so based upon MY research and declined the opportunity to be enlightened any more than necessary. My file in his office contains a "standing order" for blood work which I filled out so that I could "make an appointment for blood work" any time I deemed necessary! Obtaining his training at the U of MN, he remarked he had "seen" the condition during his training. He agreed to write my scripts after an endocrinologist at U of MN had no intention of correcting the dreadfully inadequate dosages he prescribed saying "what's your hurry?" Sound a bit familiar?

As for WPATH which is here in Minneapolis, I once sent correspondence regarding some of my concerns and didn't even receive a "form letter" in reply. I was truly left wondering if they ever talk to any of us for whom they endeavor to advocate.

My thoughts are with you; be well!

Surgeries for transition will not develop fully , and become perfected , until the various procedures are included as continuing surgical education, peer reviewed, and commented upon by surgeons at large, rather than remaining rather hidden as a niche surgical practice, developed, practiced, reviewed, and commented upon by a tiny handful of surgeons. Surgical fellowships in transitional surgery will also need to be established, and to become a subspecialty, as each significant surgery subspecialty already exists. Until this happens, transitional surgeries will have a higher rate of problematic outcomes.

Amy Hunter Amy Hunter | July 13, 2010 5:58 PM

Thanks for you comment Shay.

"...had seen the condition..."
Kinda says it in a nutshell doesn't it?

I cannot help but think it will take a truly "transroots" movement to dislodge people like Zucker and Blanchard from the APA and also establish an organization which is not intrinsically self-serving and academic such as WPATH.

I would like to mention that my experience at UoMN was great. I did not have any contact with the Gender Program. My consults and subsequent attempted corrective surgery was done through the Colon and Rectal and Reconstructive Plastic Surgery departments. I also had testing done through the Pelvic Floor Clinic.

Both Cindy (my spouse) and I feel as if we were treated with dignity and respect. The doctors and staff took time to talk and include us in all decisions. The information they offered was realistic, complete and accompanied by well considered opinion.

Your brave story telling will help others who follow in your footsteps. Be brave, my friend, and realize that you have a whole family here who will support you no matter what.

Dear Amy,

I do not have words to adequately to express my sorrow at what has been your so very unfortunate experience. I can only say that your open and heartfelt expressions and observations MUST serve as a massive motivator to TAKE BACK the POWER OVER OUR OWN LIVES AND OUR OWN BODIES.

You are "spot on" when you describe how these "gate keepers", those who are entrusted with the ultimate responsibility of the Hippocratic oath acting as uncaring neo-academic "know it all's". IMHO THEY KNOW NOTHING of what it means to live and experience what we have suffered through.

How can a man "know" what it means to be a woman, to bear a child, to feel, and love, and be loved as a woman. Sure there may be parallels but there is a clear difference.

I think that if one is to find even the glimmer of hope that any good can come of your misfortune IMHO it would have to be that your experience serve as the catalyst of what you called a "trans-root" movement to wrest the POWER away from the bigots and power hungry academic gender theorists at WPATH and put it where it belongs, in the hands of those of US who have "walked the walk" and "lived the life".

I for one am ready. I am 62 years old. I have lived the American Dream as a happy, healthy and fully functional and integrated woman in the mainstream of society , for forty of those years. I stand angry and outraged at the injustices, such as this one in Texas, http://www.chron.com/disp/story.mpl/metropolitan/7114026.html), perpetrated on all women by men, "who would be queens".