An
Additional Monologue
www.mrkh.org
Sojourner, 2001 Vol.26, No7
(March-The Women’s Health edition)
The Missing Vagina Monologue
esther
morris
Copyright October, 2000
Curious to learn what women were talking
about I read the "Vagina Monologues". I wasn't
curious about the play. I was curious about vaginas. I am a woman who was born
without one. That monologue was shared
from a father's perspective so I would like to give you my own.. This could be the Missing Vagina Monologue, or
the Monologue of Missing Vaginas. Either way it’s a
monologue that deserves more attention…
Mayer-Rokitansky-Kuster-Hauser Syndrome is a condition that
involves congenital absence of the vagina, fallopian tubes, cervix and/or
uterus. Some women have
uterine remnants, or horns. External genitalia are normal. Chromosome karyotype is 46XX(normal female).
The incidence rate is approximately one in 5000. Other symptoms involved to
varying degrees are kidney abnormalities, skeletal problems and hearing loss.
The cause is somewhat unclear, but the Syndrome occurs sometime during the
4th-6th week of fetal development. There is not much research
on the whole body, it's mostly about creating vaginas for "normal
sexual function". My main concern is not how the Syndrome develops, but how
women are transformed because of it.
This is the part that
makes me so crazy. It's hard to talk about because too
many people are uninformed about MRKH. And those of us
who have it don't have the heart to take that on. We retreat to fight the daily
battles of our anomaly, and the health issues that go along with it. It's a lot of work to keep up with because none of the
doctors I've worked with have been able to connect my symptoms to the Syndrome.
Could I have avoided years of disability had I known I had a condition that was
not suited for my chosen profession? Could I have avoided hearing aids had I
known I had MRKH, and that hearing loss was part of it? These are things I will
never know but always have to live with.
Trauma. It spirals, touching down at different times in my
life. In a scary way I hope it never ends. True, the
conflict and shame I would be well rid of, but the
presence of mind keeps me holding on, ever hoping to grasp or accept my origin
of being. Wishing I could have had choices… The chance to desire change on my
own - embracing opportunity rather than fleeing who I was and fearing who I was
supposed to be. Too much focus on making me right when
I was quite content with myself, thank you very much.
My life completely changed when I was 13 and
sent home from camp with abdominal pain. When I was examined
they discovered an imperforate hymen prohibiting the flow of menstrual fluid. I
had my 1st surgery then, to open my hymen so I could
bleed. But they found that nothing was there. I had no
vagina, just a dimple, and they could detect no uterus. I had secondary sex
characteristics, body hair and breasts, so they guessed I had ovaries but no
one knew where. The medical profession has known about MRKH since 1838, but I
was diagnosed with "congenital absence of vagina" because that's what they cared about. My abdominal pain was quickly forgotten. I was suddenly and shamefully
different. Puberty was over for me. I went from selling Girl Scout Cookies to
correcting my sexual dysfunction in one afternoon.
My doctors talked to my parents about vaginal
reconstruction so I could have a normal sex life with my husband. What husband? And why couldn't he
adjust as he would for any other "birth defect"? My parents did the
right thing. They took me down the only path available, the path of
"corrective" surgery. But I was staggering
from the loss of my fertility, the dream of having children. I received
sympathy and even pity about that, but the most pressing concern was to create
my vagina ASAP.
I spent the next few years going to
specialists, having tests to confirm my gender, being probed by curious doctors
and interns with multiple instruments in multiple holes at multiple times. There were no women doctors involved in any of my treatment.
My chromosomes were counted and discussed in front of me.
"Got to run that test again just to make sure."
There were not enough other signs to determine gender for these guys. They examined my breasts, labia, clitoris, and dimple
with blind eyes.
Not seeing what they wanted, they saw a
narrow version of normal, and I wasn't it. I was too
young to know I had the right to ask questions. Or the
right to slow the process down to fit my own state of mind. I had major doubts
about what was going on, and what was being done to
me. But I was not yet capable of wondering who was
having the biggest problem with my body. Was it me or
the people treating me? Frightened in a cloth hospital gown I did what I was told. And my relationship with
my body ended. Suddenly I had no right to have it in the state it was in. Like an android on an assembly line, I had no concept of
feeling that this body was mine. There was so much focus on the woman I should
be that I lost all knowledge of the girl that I was.
Once I was officially determined female my reconstruction was arranged. Then I could adopt
children and life would be just fine. In 1972 I had my
2nd and 3rd surgeries. I was 15˝. That summer I took a "trip" for
three weeks to avoid explaining why I had to go to the hospital. I missed
family weddings and graduations for my McIndoe
surgery. "…a slight dimple was present where the vagina was expected to
be. A transverse incision was made. By means of sharp
and blunt dissection a very adequate vagina was developed…
a split thickness skin graft was obtained from the left buttocks and attached
to the mold… The Balsa mold was then inserted into the
cavity… The skin graft that extended was attached to
the vaginal introitus… The vagina was
closed… All sponges were accounted for."
After my surgery I
was sent to recover in the maternity ward. For 17 days
I shared a room with countless women having babies. I had no visitors since I
was on a "trip" and no one knew to come visit me. It was me and my mom, and a lovely nurse named Donna who would wake
me in the morning sitting quietly by my bed holding my hand. I later realized
that she was protecting me from nightly visitors wanting to satisfy their
curiosity as I slept. My cousin worked in the hospital and visited often, but
my reason for being there was never discussed.
Two weeks later I
had Phase Two- my 3rd surgery, to have the mold and stitches removed. Then I was told about postoperative therapy to keep my vagina functional.
A functional vagina is "a vagina that will be able to accept a normal size
penis". I was given vaginal dilators for
postoperative therapy, and brief instruction to insert one and wear it every
night. The problem was solved, for everyone but me. I was left out of the experience. The whole shebang was over.
I never had a chance to deal with any of it. I had two follow-up visits with my
surgeon and never saw him again. I was another surgical success.
Why was my gender challenged in the first
place, then confirmed like something I didn't already
know? Why was my body taken away and rearranged like a
sexual Action Figure by men with knives? What was the need to feminize my body,
which actually neutered my soul? I wasn't able to see
what all the fuss was about. All the excitement just reinforced my despair. I
was living within this anomaly and feeling terribly wrong for the fact that I didn't really care that I was born without a vagina.
I was introduced to
anger two years later when I started having sex. After all that trouble I discovered that a penis would respond to anything.
I felt abused in the most intangible way, a victim of
arrogance and assumption. I couldn't identify it then;
I became an instant survivor. And I was told that I
would never meet another woman like me. Big time isolation.
Divide and conquer? Well I don't know, but one in 5000
is NOT that RARE. I just didn't know that then. I
denied my depression. Like the Hunchback in the
Tidbits of emotion overwhelmed me in very big
ways. I was learning that normal was merely a concept for people who couldn't cope with anything different. I alienated myself
from peers who would rightfully complain of menstrual cramps and NO I don't have a tampon! I mastered the stoic, intellectual
method of coping and strapped myself in. It was going to be a bumpy ride.
As I grew older I
realized I was faced with many questions. How will I experience menopause? How
do I monitor the health of my ovaries? How many ovaries do I have and where are
they hiding? What about pap smears? I was tracking my
cycle with notes on the calendar so I could attempt regular breast exams. I was
tired of all this and really pissed that I had to ask
all the questions. I was caught in this funky body
with no place to go. And I was having other physical
problems that needed attention now too.
I finally had another medical work-up done in
my early thirties. Technology had changed and they found one ovary. (Two years later they found the other one.) The report I got back from
the specialist restated what my doctors said twenty years earlier, but with a
fancier name: Mullerian/Vaginal Agenesis. He also noted that my vagina had
shrunk. I was recommended for annual ultrasounds to
monitor for ovarian cancer. I religiously compared my test results from year to
year. In 1997 I noticed a change in the report and
called my doctor about it. I was referred for
follow-up and another round of tests. They thought I had an ovarian cyst.
After a laparoscopy to remove the cyst the
surgeon told me that the procedure didn't work. But he confirmed my suspicion that he would find my uterus.
Imagine my surprise when he told me he found two. A full
sized uterus on the left ovary and a uterine remnant on the right. So why do my body parts suddenly appear, or have they been there
undetected all these years? Could my neovagina have been connected to a uterus enabling
me to have children? Was this the cause of the crippling pain
I have lived with since I can remember? I thought this was taken care of
decades ago; so why are things acting up now?
Ironically, my 5th surgery was for two hysterectomies;
and back to the
Every time I get depressed about this I take some little action. Fifteen years ago I got my hospital records and read about my surgery. I
have also gotten medical records from every doctor I have ever seen. My sister
sent me an article and in the year 2000, I learned about MRKH for the very
first time. I got a copy of my latest work-up from eight years before and saw
Mayer-Rokitansky-Kuster-Hauser Syndrome written there
too. The report my specialist sent me had left that diagnosis out. But he was quick to point out that my vagina had shrunk.
Apparently, vaginal function was all he thought I needed to know. Apparently,
other parts of the Syndrome were not of concern. I was
disabled with back problems at the time, but the connection was never
discussed.
Guided by a possible diagnosis, I went to the
medical library to research articles on MRKH. I was in my forties and finally
had something to call this other than bizarre. That is when I discovered the
other symptoms associated with the Syndrome. The connection to years of
disability and hearing problems made me numb. If I had known
I was predisposed to disabilities I would have made more appropriate decisions
about my life. But what a joy to confirm that I hadn't
brought them on myself. The most important discovery I made was to learn that
there are many variations of gender. This revealed how we are
forced into incredibly rigid standards. Even though I was
labeled female, I feel more like an it at times. To ignore most
of the possible genders is to ignore diversity altogether. Those who don't fit the traditional male-female dichotomy may seem
few, but maybe not if we allowed ourselves to see them; to respect diversity. A
whole new perspective was growing from very old
emotions.
Reading the articles on MRKH made it
painfully clear that this wasn't just about bodies,
and that the "corrective" approach to genitals should not immediately
be assumed. Emotional and sexual counseling would have provided me with a more
permanent and accepting solution. If I wanted surgery later in life then I
could work toward that. I feel abnormal because I had to be
fixed, not for the truth about my body. I feel different because of my surgeries,
not because of my vaginal dimple. Being born without a vagina was not my
problem. Having to get one was the real problem. It's
not that my vagina has shrunk that alarms me now; it's the fact that we judge
vaginas (genitals) at all. People don’t fail to meet
the definition of normal gender, but the confines of the definitions fail to
meet the people. Even with the benefit of normal female chromosomes
I feel oppressed by this. Too many people are turned
into "freaks" when we refuse to see them as they are. But our genitals are also our privates and they are not to
be discussed. Or different. Wishing
again to have had choices…
I am an adult now and I DO have choices. I no
longer choose to trust without question. I no longer choose to believe without information.
I am an adult now and I have a library card! I have researched the various
surgeries and dilation treatments used to create vaginas. Surgery is used for a
person with no vagina-or when dilator treatment doesn't
work. Dilator treatment is less risky, but still very invasive and just as
emotional. The basic method is to apply enough pressure with the different
sized dilators to indent your tissue enough to achieve an "acceptable
depth". It takes anywhere from two to eighteen months depending on how
often you can do it. I gave up using my dilators after the first few years.
Even after my surgery it was painful. And it wasn't stretching anything. It felt emotionally
self-defeating for me to continue. So I gave them
names, and hid them in the attic.
Various body parts can be
transplanted for "normal sexual function". The bowel and
intestine have been used to make vaginas, though not
so much anymore. I read one case where an actual vagina was
transplanted from the patient's mother. My mother's used vagina?! And regardless of the procedure
or the treatment you have, you still have to keep your vagina functional with
dilators if you don't have regular intercourse. Now who benefits most from
that?
There are a few studies on the psychosocial
development of women born with vaginal agenesis. The doctors more or less
credit themselves for making us feel normal again. But
they are the ones who lock us out with their categories of normal and abnormal.
Those of us who don't fit in are reshaped until we do.
One doctor wrote how an "angry, withdrawn, muscular girl" was transformed into "a woman responsive in coitus and
eager to adopt children". I can assure you that she worked much harder
than he did.
Five months ago I
found an online support group for women with MRKH. Having believed that I was
the only woman I would ever know with this experience, I was totally
overwhelmed. The case studies I had been reading about became real women who
finally humanized this experience for me. Some of their stories seemed so traumatic
that it challenged me to recognize that their trauma was also mine. What a
wealth of information when compared to medical journals. These women taught me
more about treatment and courage in a week than any stack of articles or any
doctor ever could. Our dysfunction has been treated.
Our success rates have been tallied. Then we are sent out on our own to make peace with it all. I felt
driven to read between the lines, so I asked some questions of my own.
I compiled a survey of questions and emailed it
to the group. When twenty-one women answered my survey
I realized this experience could not be captured in a questionnaire. We each
have our personal experience with this and cope in our own valid ways. I got
most of my information from the question: "What Else Would You Like To
Say?" There is so much more to this than "normal sexual
function". So much more to the women I am listening to now.
Every woman who answered my survey wanted her
doctor to be informed of MRKH. Of the twenty-one women
who responded only four of their doctors had heard of
MRKH before the initial pelvic exam. Two of those four "hardly knew
anything". The rest of our doctors were "shocked" or
"excited" about treating us. One woman's doctor "…ran
into his office to look a few things up." Other women were
referred to specialists without explanation. Most of us never knew we
had a Syndrome until years after our vaginal procedures.
Many women are true success stories with
supportive doctors and positive experiences. Yet even then
there is something missing. Most of us feel that our lack of body parts
threatens our identity. We get that message loud and clear and for some that
scars the most. We battle frequent depression. We hate being told how lucky we
are by people who don't have a clue. We are saddest
about infertility but there is no procedure to give us wombs.
The women in the group are passionate about
helping other women, and for the need to educate doctors. One woman's doctor
gave her a vaginal dilator and compared it to a shoe stretcher. He then told
her she could become a nun. A young girl's doctor told her
that "some species respond to overpopulation by producing
sterile females". Some doctors only ask about the sexual pleasure of
husbands and boyfriends with no regard to the patient. Some women have needed
additional surgeries because their skin grafts grew hair inside their vaginas.
The reports on how to avoid colostomies during bowel transplants tell me there
have been too many slips in the operating room.
In regard to treatment, twelve of the fifteen who completed
treatment felt it was required to be sexually active, normal or loved. The rest
of the women felt correction was somewhat required, but they added that they
wanted it. Some women question the importance of intercourse. "What's the
point? I'll never get pregnant… We share pleasure in
many other ways…"
Of the women with medical procedures-all were told by their doctors that their procedures were
successful; but not all of those women agreed. One woman had two surgeries
before being happy with the result. And two women
tried different procedures before finding treatments they could live with. For
some women intercourse is too painful or not possible at all. Only three of the
twenty-one women were told there were alternative
sexual practices besides vaginal penetration. And one
woman was cornered by her doctor and told "…how men like oral sex and
different positions". Three women were given treatment options but most of
us didn't know options were available. One woman had a
medical procedure to prepare her for self-dilation. She added, "I
didn't know about the slit".
Most of the women were worried that their
vaginas would not feel normal to their sex partners. Primarily the partners didn't notice. But one woman was
called a "freak" and one woman was asked why her vagina was
"so shallow". Another woman was bluntly
asked, "Can't you fix that thing?" Until that moment she thought she had.
I have read a lot about the "medical
challenge" of treating women with vaginal agenesis but I think the
challenge is broader than that. We challenge the role presented to women and
that makes people very nervous. We challenge the concept of normal for gender
and sexual activity, and that makes people fanatic. Indeed
we are atypical but we are women all the same, with test results to prove it.
Most of us don't realize we pose any threat at all. We
start out our lives as normal little girls. Then suddenly something suggests
that maybe we're not. The foundation
of our identities crumble when we don't measure up. We are literally molded to fit societal values. We accommodate
sexual standards to phenomenal extremes with a determination never dreamed
possible. We are faced with questions of our most
vulnerable selves during our most formative years. But
how can you follow your heart to the answer when the process has ripped out
your heart?
I come out about my surgery in carefully
selected ways. I have seen the response of too many twisted faces telling me
that they have never heard of such a thing. They show me pity. They tell their
friends this great gossip and strangers ask intrusive questions on the street
corner. One medical practitioner told me I was "just too weird".
I have been physically assaulted by women who presumed I was transgender and too
active in the women's community. I have been asked if
this is what made me a lesbian, by lesbians who were born with vaginas.
Questions have haunted me for too many years
because I couldn't find the words. Knowing other MRKH
women has finally allowed me a voice. But I don’t want
it to stop there. My condition seems extreme only because it's
unheard of. Many of the women I surveyed want MRKH to become more public. The
hope of opening the door to our secret lives in most of us. We exist in a
conundrum because our knowledge is powerful but hidden in embarrassment and
shame. The approach to our treatment is very extreme
but effects all women in subtler ways. Advances in medicine offer men Viagra,
but women still get the knife. Scar tissue does not enhance sexual pleasure.
I want people to understand that doing the
right thing often does more harm than good. The standard of normal that we aim
for is imaginary. We alter women's bodies when attitudes need adjusting.
Correcting our genitals tells us they are wrong. Different is not wrong.
Different is different. Women shouldn't have to endure
emotional and physical pain to perform one sexual act when so many options are
available. I understand why we do that as much as I resent it. I resent it
because of the price we pay for society’s lack of creative thinking.
Identity shouldn't
be centered around body parts; missing, constructed, or removed. Women with
MRKH should be treated as women with a Syndrome rather than
isolated by our sexual dysfunction/disorders. My
"absence of vagina" posed less of a threat to my health than the
parts of the Syndrome that disabled me. Then why is a vagina all I was given to cope with a much greater loss?
The complete survey, article, and links to
resources can be found at www.mrkh.org
or Email: info@mrkh.org
Read Beyond the
Monologue
Journal of Gay and Lesbian Psychotherapy, 2006, 10(2) 73-88