Esther Morris Leidolf
(Journal of Gay and Lesbian Psychotherapy 2006, July; 10(2)73-88)
coedited
by Vernon Rosario and Jack Drescher
Please read the Missing
Vagina Monologue, published in Sojourner 2001 available at www.mrkh.org
ABSTRACT. The author, a
middle-aged woman, was originally diagnosed with sexual dysfunction--also known
as "Congenital Absence of Vagina"--at age thirteen. Since that time, she underwent four
exploratory and corrective surgeries, without ever receiving a correct
diagnosis of the syndrome that explained her condition. The author describes personal experiences
with the medical profession and her emotional response to the diagnosis and
treatment. The author made contact with
a MRKH Internet support group and conducted a survey of its members. This paper discusses the qualitative results
of this survey, confirming the need for awareness of atypical reproductive
issues. This paper concludes with
recommendations on the medical and psychological treatment of MRKH.
KEYWORDS. Congenital
absence of vagina, corrective surgery, genital surgery, intersex,
Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH), McIndoe, Mullerian agenesis,
vagina, vaginal agenesis, vaginal dilation, vaginal treatment
Writing this Missing Vagina Monologue is the first
time I ever looked at my medical history from beginning to the present. It is the first time I have ever considered
this experience in terms of my life. My
MRKH has always been treated as a physical issue, to be dealt with medically
and surgically. In the process, my
feelings have been fragmented by procedures, opinions and missing or measured
body parts. The more I learn, the more I
realize what I need is to UNlearn what I have been taught.
Society and medicine experience the intersex
population as a freakish and unacceptable physical phenomenon. Our bodies are perceived to need "correction." However, it is not intersex conditions
themselves that are harmful. It is the
way society treats people with intersex conditions that causes harm. Some conditions are discovered at birth and
others later in life. Some people are
informed of their physical histories or syndromes, but most of us are not. Some infants are considered to have a medical
emergency that must be "corrected" before leaving the hospital. As infants, no one asks them for their
consent. Other people become convinced
later in life that altering their bodies will make them "normal." Usually the focus of treatment is genital
appearance, or definitions of sexual function rather than medical need. However, when bodies are dissected to correct
physical "flaws," emotional attachments are also cut.
Occasionally there are medical needs that require
intervention, sometimes even surgery.
But the standard medical practice of "normalizing" surgeries
must be questioned. Corrective
procedures are meant to prevent emotional trauma for patients, or parents who
may not be able to bond with an atypical child.
Before we can prevent the trauma, we must examine what provokes it. The silence around atypical genital and
reproductive development contributes greatly to the problem. The real phenomenon is the prevalence of
genital and reproductive variation.
Doctors will admit that there is a wide range of variation, but their
standard for what is acceptable has been determined by the values with which
they are comfortable--rather than the variations in genital appearance that
actually exist. Excluding the variables
of differentiation tips the scale in a way that promotes medical and social
values and overrides human realities.
Variations are so quickly "disappeared"
that we do not get a chance to know about them, or how they might mature. We lose the opportunity to get comfortable
with our options. There is entirely too
much stigma around genital body parts.
We teach our children to respect the differences in others, yet adults
create a state of emergency over the size and shape of genitals. When I talk to people about intersex they are
stunned by what they did not know. Their
ignorance is genuine and their concerns hopeful. They see the benefit that intersex awareness
can liberate everyone from rigid standards.
History reminds us that social values can change with awareness. Homosexuality is no longer listed in the Diagnostic and Statistical Manual of Mental
Disorders. It is time to realize
that intersex cannot be "cured" either. Cosmetic treatment will never change who we
really are it only prevents others from seeing us.
Most of us want to love our bodies but everything
we are taught forbids us to do so.
Living in bodies that raise all these questions puts too much
responsibility on the patient. Knowing
that people so rarely talk about genital or reproductive development makes it
even harder to be scrutinized in the medical environment. We leave the ordeal of the doctor’s office
and return to the world of hushing our experience because, "Sshhh, it makes
people uncomfortable." We are
isolated without emotional support because we are not supposed to talk about
ourselves. This is a result of limiting
awareness. If people were told how
common intersex conditions are, there might not be such panic around personal
discovery.
Upon reflection, my own emotional development was
interrupted when my doctor told me I was infertile and labeled me with "sexual
dysfunction." I was medicalized out
of experiencing puberty. My first
experience with vaginal penetration was under anesthesia. My first vaginal encounter was a piece of
plastic prescribed as postoperative therapy.
All the attention to prepare me for sexual intercourse was done prior to
my having any interest in a sex-partner.
All this was done to prevent emotional trauma, and make me feel "normal." In fact, it did just the opposite. I never had a chance to want a vagina, I
simply had to have one.
My trauma started with the value judgment
overriding my sense of myself. It was
about denying adequate health care because an "adequate vagina" was
more important. It was about discovering
that all my physical differences were part of a syndrome that nobody previously
told me about.
My
personal privacy was first violated in the hospital the night after my McIndoe
Surgery. I was awakened by the touch of
someone spreading my thighs; and looked down to discover a light under my
sheets. When I objected, he replied, "I
didn’t think you’d mind." When I
asked if he was the resident who was working with my doctor he explained he was
a podiatrist who was, "Just curious."
Considering the amount of time I have spent with
doctors, I marvel at the fact that my sister was the one who told me about
MRKH. Most of our doctors have only read
one or two pages about atypical development in medical school. When differences become evident, we are not
told of the frequency, we are told how to "correct" them. We are rarely told what to expect after
treatment. We are not told to explore
our own desires; we are told what is "normal" and how we "should
be." Most importantly we are not
told that we are viable just the way we are.
Patients and families are forced into irreversible decisions while in a
state of panic without complete information.
Society and medicine focus on procedures to correct intersex conditions,
not advice for living with them.
People have to know the values of correction to
determine if they want to adopt them. It
seems fair to ask some questions. Why is
a woman’s sexual function defined by her relationship to a penis rather then
her own sexual body? Are women without
vaginas "dysfunctional," or do other people become dysfunctional when
their expectation of a vagina has let them down? Why are we suddenly different when we learn
about our anatomy as though who we were before never mattered? And why are young women making drastic and
permanent decisions about their sexual bodies before they become sexually
active?
Before making any decisions, patients and
clinicians should be aware of not only what is in medical articles or
textbooks, but about what can be learned from the personal experiences of
adults in our community:
• Medical
procedures are irreversible. Research on
long-term results is inadequate because adults are "lost to follow-up."
• Terms such as "abnormal", "disorder"
and "dysfunction" reinforce
negative stigmas that can contribute to negative sense of self.
• Scarred or
removed organs and nerves do not feel pleasure, but they often experience
pain.
• Rearranging
tissue can cause lifelong malfunctions and/or infections.
• Neovaginas
have been punctured during intercourse.
• Society and medicine limit us to two
chromosome types when there are at least five different chromosome
variations. In reality 1:1600 people
have chromosomes other than XX or XY (Blackless, et al., 2000).
• Increased
social inclusion and exposure would help to prevent emotional trauma without
creating scar tissue.
• Many women,
and their partners, have satisfying sex lives without vaginal penetration.
• "Corrective"
procedures should be presented as a final option, not the first.
• Patients
will eventually learn about their medical history or syndrome, and inevitably
resent being lied to and having to find out on their own.
• No one
should determine gender, or define sexual function for another person without
their direct participation and informed consent.
• Patients
need time to make their own decisions about their bodies.
It has been argued by the doctors that the reason
for "corrective" treatment
is to prevent emotional trauma. Yet the mental health profession has been left
out of our care. Becoming part of an
active community is the first experience I found that has offered me any
validation. I was left to think that I
had failed drastically because my neovagina did not make me feel "normal." Yet I never received any emotional care for
my fears or anger, the loss of who I was, or the loss of my natural body. Once deemed a "medical success," my
feelings became irrelevant. Since
success meant transforming into someone I am not, I have avoided success from
that moment on.
There is a great disparity in the information
available to medical and mental health providers. The medical database, PUBMED, turned up
one-hundred-fifty-six articles on MRKH while a search in the PsycInfo database
found only four, the most recent being 1986 (Lewis and Money 1986,
Money, Schwartz, and Lewis 1984, Raboch, and Horeisi 1982, Tucker 1941).
Support groups are the best resource for
information and emotional support.
Patients usually find them on their own, or long after treatment. Some groups are offered in
hospitals--gatherings that are organized by patients--and also on-line. Some groups are closely moderated while
others are not. The common theme is that
without each other we would be doomed to a life of ignorance, isolation and
shame. These groups are where the
experts are found. They are the
survivors, the researchers, and provide the follow-up so desperately
needed. Support groups offer patients and
families a chance to hear from adults with real life experiences. This is what the survivors have taught
us:
• People lose ownership of their bodies when
they are subjected to treatment without options, knowledge or consent.
• Patients need emotional care before physical
treatment.
• Squeezing an individual with an atypical
anatomy into standardized categories can undermine identity and self
esteem.
• Being lied to, or misinformed about one’s
medical history can irrevocably destroy one’s ability to trust doctors and
parents. It can compromise these
relationships beyond repair.
• Children may find it difficult to discern
sexual abuse from a uncomfortable examinations or painful genital treatments in
a professional environment. The same may
be true for parents who are instructed to dilate children after early vaginal
surgeries as well.
• Medical examinations and procedures can be
subjectively experienced as "sexual abuse." Patients with unusual presentations are often
put on display as teaching tools for medical students, interns, and residents.
Doctors need to feel as often as they
touch.
• Daily reminders that one does not fit into
social or medical standards are emotionally exhausting. When one is treated as a threat to the
culture, the burden may feel overwhelming.
Patients need help in carrying that burden.
• The need for surgical "correction"
is often more important to other people than it is to the patient. A heightened focus on genital appearance or
sexual function can overemphasize the importance they have in an individual’s
life.
• Most people with intersex conditions have
undergone more procedures by their teens than other people do in a
lifetime. A history of pain or genital
surgeries can lead patients to ignore important warning symptoms of other
health related matters. Patients need
support to pursue all their health needs.
• Sexual self worth can be damaged by
professional interventions and opinions.
A focus on "correction" can leave a patient feeling
dysfunctional, abnormal, inadequate, too big or too small; or totally
disinterested.
• Some patients are forced into a world of "little
lies" to cover up their medical histories.
As a result, they are denied access to emotional support and may feel
cheated out of a sense of wellness. They
may also struggle with the conflict of lying.
• Families are affected by the medical
treatment of members with atypical development.
Parents need support to decide how to care for their children and accept
atypical anatomy. Children need support
to decide what is best for them.
Partners need support to help them deal with the way intersex treatments
affect their relationships.
• It can be painful and difficult to "break
in" and educate new physicians, especially when the patients medical
histories are not been completely explained to them. Mental health clinicians must learn as much
as they can about intersex conditions and treatment. Given the medical secrecy surrounding
intersex, they may not be able to rely on their patients/clients for basic
information.
• Coming out is the greatest gift we can give ourselves. I now have the support of friends, family,
therapist, doctors, medical allies, church, college professors, boss and
coworkers, and an entire community.
Patients need support to determine when and where to come out; and how
to make that feel safe. It took me
thirty years do that on my own.
References
Blackless,
M., Anthony C., Amanda D., Fausto-Sterling A., Lauzanne, K. & Lee, E.
(2000), How sexually dimorphic are we?
Review and synthesis. American Journal of Human Biology,
12:151-166. Available from http://www3.interscience.wiley.com/cgi-bin/issuetoc?ID=69504032
Carmil,
D., Bar-David, E., David, A. & Serr, D. M. (1975), Congenital absence of
the vagina: clinical and physiologic aspects.
Obstetrics and Gynecology,
46:407-409.
Ensler,
E. (1998), The Vagina Monologues.
Foley,
S. & George W.M. (1992), Care and counseling of the patient with vaginal
agenesis. The Female Patient 17 (October):73-80. http://www.isna.org/articles/foley-morley.html
Kaplan, E.H. (1968), Congenital absence of
vagina: Psychiatric aspects of diagnosis
and management.
Kutile,
M.M. & Weijenborg, P. (2000), The effect of a group programme on women with
the Mayer-Rokitansky-Kuster-Hauser syndrome.
British Journal Obstetrics &
Gynecology, 107:365-368.
Lewis, V.G. & Money, J. (1986), Sexological theory, H-Y antigen,
chromosomes, gonads, and cyclicity: Two
syndromes compared. Arch. Sex. Behav., 15:467-474.
Money,
J., Schwartz, M. & Lewis, V.G.
(1984), Adult erotosexual status and fetal hormonal masculinization and
demasculinization: 46,XX congenital
virilizing adrenal hyperplasia and 46,XY androgen-insensitivity syndrome
compared. Psychoneuroendocrinology, 9:405-414.
Raboch,
J. & Horejsi, J. (1982), Sexual life of women with the Kuestner-Rokitansky
syndrome. Arch. Sex. Behav., 11:215-220.
Tucker,
B.R. (1941), The relation of the hypothalamus to neuropsychiatry. Southern
Med. J., 34:724-730.
Internet Resources
Information
on MRKH: www.mrkh.org
MRKH
Survey: http://mrkhorg.HOMESTEAD.com/files/home/SummarySurvey.htm
Information about intersex, in
general, can be found at the Intersex Society of North America online library
(which includes videos and books): www.isna.org.
Care and counseling of a patient
with vaginal agenesis: http://www.isna.org/articles/foley-morley.html