Department
of English, Ohio University
Polycystic Ovarian Syndrome (PCOS) is the leading cause of female infertility
and one of the top reproductive endocrine disorders in the world.[1] It has been estimated that 6-10% of women have
PCOS.[2] Despite theses startling statistics, few people
outside of medical science know of its existence. PCOS is generally characterized by the appearance
of irregular menstruation, infertility, obesity, and excess levels of male
hormones.[3] It is often misdiagnosed, because the symptoms
are similar to those of other disorders that affect women, such as Cushing’s
Syndrome, Turner’s Syndrome, and congenital adrenal hyperplasia and not all
women with PCOS have all of the symptoms. Women are often diagnosed on the basis of family histories of diabetes,
hypertension, or infertility, and by the visible manifestations of the disorder,
such as excess body hair, severe acne, greasy scalp hair, and obesity.
The treatment options for PCOS are limited by the expertise of the
physician, the severity of symptoms, and the time period in which the patient
is diagnosed. Given the large number of variables involved in diagnosing and treating
PCOS, women with the syndrome do not always receive the best care possible
for their particular needs. In this
essay, I will investigate the ways in which cultural attitudes and technological
advances have impacted the treatment and diagnosis of PCOS and the role that
women diagnosed with the syndrome have played in that history.
Two Chicago doctors, Irving Stein and Michael Leventhal, first diagnosed PCOS
in the early 1930s and reported their findings in a 1935 article published
in the American Journal of Obstetrics and Gynecology.[4] They described seven women who were suffering
from infertility and amenorrhoea. After
x-raying their pelvic areas, they determined that these women had enlarged
ovaries that contained several cystic structures. Stein and Leventhal operated on the women to perform wedge resections,
a procedure in which a small triangular-shaped slice is cut out of the ovary,
which is then sewn back together. They
believed that wedge resections removed obstructions from the ovary, in this
case cysts, and allowed for normal ovarian function to resume. Indeed, the women resumed their cyclic menses
and five of them conceived. In 1945,
Stein published a follow up report in which he added excessive male-pattern
hair growth and obesity to the list of symptoms.[5] The future course of PCOS treatment and diagnosis
was firmly in place. Although other
symptoms of PCOS have been noted by women who have the syndrome, the four
main symptoms of PCOS established by Stein and Leventhal between 1935 and
1945, irregular menstruation, infertility, obesity, and hirsutism, continue
to be the focus of research and investigation.
In this essay I will explore the impact of cultural attitudes and technological
developments on the changes in the diagnosis and treatment of these symptoms
from 1935 to the present.
1935-1970: Wedge
Resections
In the years following the Stein-Leventhal
reports, the medical community made little progress in finding new treatments
for PCOS, then called Stein-Leventhal Syndrome. Doctors tried medical therapy
in the form of estrogen supplements and ovarian stimulants without much success. Wedge resections became the most popular form
of treatment. John Gruhn and Ralph
Kazer argue that doctors treating PCOS at this time were performing wedge
resections more than they should have in an effort to experiment and gain
experience with polycystic ovaries.[6] Although they are probably accurate in their
assessment, other factors also contributed to the persistent use of wedge
resections and the apparent disinterest in finding new methods of treatment
for PCOS. In the years following World
War II, reproduction became a national obsession and the childless, involuntary
as well as voluntary, faced pity and scorn because parenthood evidenced socially
sanctioned heterosexuality and patriotism.[7] Wedge resectioning provided short-term answers
to fertility problems; therefore, even though the procedure did not fix or
cure PCOS, it allowed women to fulfill their roles as mothers and wives when
those roles were strictly defined and inextricably linked to moral and social
expectations. This early emphasis
on infertility became both an important avenue of investigation for future
PCOS researchers and a source of frustration for PCOS patients who were not
treated for other symptoms of PCOS and were told to return to their physicians
only after they have decided that they want to conceive.
Although I polled a large
sample of women with PCOS, 955 total, I was unable to find even one woman
who had been treated specifically for PCOS during this early period.[8] Some women said that they new they had “female”
problems, but never learned from their doctors that they had PCOS.
They would not find out until much later that the doctor had diagnosed
them without telling them. Other women looked back their initial encounters
with doctors and recalled that the symptoms of PCOS were visible then, but
their doctors diagnosed only infertility and irregular menstruation. Sandy, a woman who did not find out that she
had PCOS until she had achieved menopause, wrote:
In the 1950s, no one talked about the problems that they
were having with menstruation and infertility, not even with our mothers.
I finally went to the doctor after I got married and couldn’t get pregnant.
He told me that infertility is not that uncommon and a simple operation
[wedge resection] would fix me right up.
Two years later, I gave birth to our first child, yet still felt sick
and didn’t have normal menses. The
doctor said that I shouldn’t worry about it, and that I should be grateful
that I was able to have a child.
Sandy’s story illuminates the medical community’s inability or unwillingness
to treat symptoms other than infertility. Menstrual irregularity, hirsutism, and obesity
seemed to be secondary issues in the treatment of PCOS, and were often not
treated at all. Until Keetel, Bradbury,
and Stoddard published their article, “Observations on the Polycystic Ovarian
Syndrome”[9] in 1957 there
was relative silence about the syndrome. Researchers published a few articles on PCOS
in the 1960s, but there were no new developments in the treatment of PCOS
until the early 1970s when a new technique was developed to aid in the study
of human hormones.
1970-1980:
Gonadotropin-releasing Hormones and Birth Control Pills
Solomon Berson and Rosalyn Yalow’s 1967
development of radioimmunoassay, to accurately measure hormone concentrations
at very small levels,[10]
would change the course of PCOS research.
The radioimminoassay technique gave scientists the ability to measure
gonadotropin-releasing hormones (GnRH), such as testosterone and estrogen,
more precisely and to determine their relationships to each other. PCOS researchers used that knowledge to assess
PCOS, which lead to a method of diagnosis in which levels of lutenizing hormone
(LH), a pituitary hormone that acts in the ovary to stimulate the ripening
of the follicle, are in a three-to- one ratio with levels of follicle stimulating
hormone (FSH), which stimulates the maturation of the follicle before it is
released into the fallopian tubes. Also, as a result of radioimmunoassay, women with PCOS were shown
to have high levels of estrogen and low levels of progesterone often accompanied
by high levels of male hormones known as androgens.[11] This understanding of the GnRH functions in
PCOS lead to what became and remains one of the most common methods of treatment,
birth control pills.
The use of birth control pills (bcps) to
treat PCOS is a complex story that is difficult to discuss without examining
the contemporary cultural attitudes about women’s bodies and women’s roles
in society during the 1970s. Bcp treatment
of PCOS impacted the characterization of all four classic symptoms of PCOS
and eventually slowed work on alternative methods of treatment. Doctors began prescribing bcps for PCOS patients
in the early to mid-1970s when estrogen levels in bcps were lowered to prevent
blood clots and hypertension. Doctors used bcps to suppress androgen production
and to balance estrogen and progesterone levels to control hirsutism, male
pattern hair growth, and other symptoms associated with androgen excess, and
to regulate the menstrual cycle. This
early use of bcps was not seen as a cure for PCOS, but as a way to relieve
its socially unacceptable characteristics.[12]
The bodies of PCOS women whose symptoms go
untreated defy societal expectations of womanhood and femininity. High levels of androgens can cause hirsutism,
male pattern hair growth on the face, chest, and abdomen, and the development
of cystic acne. The imbalance of LH
and FSH suppresses ovulation and elevated levels of estrogen promote irregular
menstruation. In addition, obesity
occurs as the elevated androgen levels prompt the production of excess insulin,
which is eventually stored as fat tissue. Not only does the physical appearance of women
with PCOS conflict with the concept of the ideal female body, but the bodily
functions associated with womanhood, regular menstruation and the ability
to reproduce, place women with PCOS outside the norm and prompt them to seek
treatment for these apparent aberrations.
Hirsutism and acne are the most visible symptoms
of PCOS and ones that women often find are the most difficult aspects to deal
with. Joan, a 30 year old woman with
PCOS, describes her battle with hirsutism:
By the time I was nineteen, I had a full beard that I
had to shave twice a day. would have a five o’clock shadow by lunchtime and
would sneak to the bathroom at work to shave it off.
I was a data entry supervisor and each time I would help one of my
employees with a computer problem, I feared that he or she would see the stubble
that marked my face and neck.
Although bcps did not eliminate all male-pattern hair growth in women
with PCOS, it did slow its re-growth rate. In addition, women who suffered from adult-onset acne, also showed
improvement after taking bcps. Acne
is particularly destructive for women with PCOS, because it not only affects
their appearance while the acne is present, it often leaves scars.
Rebecca, who had a relatively clear complexion until her mid-20s, writes
about the affects of adult-onset cystic acne on her emotional well-being:
The acne scarring has been the worst of the PCOS symptoms
for me. It’s not that I
didn’t know my skin looked bad, even with foundation and powder. But I went home crying one day
when someone came out and said to me how pretty I was but why
don’t you do something about your skin.
Clearly, these two physical manifestations
alone impact the way society views women with PCOS, as more masculine or less
feminine, but PCOS is often also accompanied by anotehr social stigma--obesity. In the 1970s and 1980s, doctors knew little
about the relationship between obesity and PCOS. Although most researchers at the time attributed the obesity to
abnormal hormone levels, they never established a direct link between PCOS
and obesity. The medical community argued, however, that obesity was responsible
for other health problems, so doctors urged obese women to lose weight to
alleviate their PCOS symptoms. However, since the relationship between obesity
and PCOS was not clear, it was difficult for patients and doctors to understand
how women with PCOS could achieve weight loss.
Obesity was and is a complex issue in American
culture. Understanding the cultural
implications of obesity requires an examination of gender roles and medical
discourse. In Women’s Health: Psychological
and Social Perspectives (1998),[13]
Christina Lee argues that these expectations are the result of the concept
of “normative discontent,” which she
describes as “the notion that it is normal for Western women to be unhappy
with their bodies, [which] has been accepted as a natural facet of femaleness;
in fact, not being concerned about one’s body shape is seen as unfeminine
and somewhat odd” (136). Shelly, who
has had trouble controlling her weight since puberty, writes about the role
that her body size has played in her life:
I am so tired of trying to defend my weight to doctors
who insist that I am overweight because I am lazy or I eat too
much. It appalls me to think that these doctors who
are treating me for PCOS do not understand its role in my weight
problems. I feel so ugly
and stupid when I leave my doctors appointments, which only gets worse when
some jerk on the bus “moos” at me on my way home.
I hate being fat, because I feel inadequate and not very
feminine and yet I feel so powerless against the weight gain.
Despite their usefulness as basic hormone regulators, bcps did little
if anything to diminish obesity, and in fact, many women actually gained weight
on bcps.
Women with PCOS commonly
feel less than feminine or unwomanly, and their feelings are complicated further
by irregular menstruation and infertility, two biological functions that have
long been the definitive markers of womanhood. Women with PCOS either do not menstruate at
all (amenorrhoea),menstruate sporadically (oligomenorrhea), or menstruate
continuously (dysfunctional uterine bleeding).[14] Regular menstruation signifies health and normalcy,
and any deviation from that regularity indicates difference, abnormality,
and deficiency. Not only are women
with PCOS seen as lacking some essential feminine quality because of their
irregular menstrual cycles, they have a different relationship with menstruation
than most women do. Women have been
trying for many years to release themselves from “the curse” of menstruation,[15] while PCOS
women look forward to menstruating partly because of the social implications
of not having a regular period, but also because it signifies that their bodies
are functioning somewhat normally and they may even be ovulating. Also, research indicates that pelvic inflammatory
disease and reproductive cancers can result from the build up of the lining
of the uterus when it is not regularly discarded.[16] Therefore, the absence of menstruation in women
with PCOS symbolizes a great deal more than just lack of societal conformity,
but rather a fear of deteriorating health and well being. Vanessa, a young woman who has struggled with
regulating her menstrual cycle for about six years, wrote:
I never know what to expect from month to month. While my friends have regular 30-day cycles,
my cycles span from 45-120 days. No,
I don’t miss the blood itself, but I do miss knowing that my body is working
right and that I am getting rid of all of that build up regularly. It is just so frustrating sometimes never knowing
when or where it is going to happen.
Bcps have been used effectively for regulating menstruation, but like
with the other major symptoms of PCOS, they only mask the real causes of PCOS,
which have never been fully defined.
The lack of regular menstruation
is also a problem in terms of fertility, because women use the regularity
of their menses as an indication that they are not pregnant. Women who do not menstruate regularly do not
have any know whether they have conceived or not or whether they have ovulated.[17] In age when prenatal care is emphasized, these
women feel anxious and the possibility of unknown pregnancy.
Also, the miscarriage rate for women with PCOS is about 60%.[18] If pregnancy is detected early enough, drug
therapy can be used to sustain it. Therefore,
the pressure of not knowing when they are pregnant further complicates the
issues of infertility that most PCOS women face. Annovulation occurs in a large number of women
with PCOS, but many of them are not even aware of it until they try to conceive.
Although there are many reproductive aids
available to women with PCOS, such as chlomiphene citrate, metformin, IVF,
GIFT, and others, infertility is difficult to deal with given the status of
parenthood in the U.S. Jennifer, a
36 year old woman who has been trying to conceive for about 10 years, has
tried everything to conceive:
I have taken drugs, have had my tubes filled with dyes,
even had my ovaries cut open and sewn back together, and I am
still not able to get pregnant. I
guess my next step is in-vitro fertilization.
I just get so frustrated that my friends have been able to get
pregnant without thinking about it. I
will keep trying until there are no options left.
Birth control pills were effective forms
of treatment for women with PCOS who did not want to conceive. They helped reduce hirsutism and acne and assisted in regulating
menstruation; however, bcps only masked the symptoms of a much larger health
problem. In fact, some women who used
bcps for the sole reason of preventing birth discovered that they had PCOS
after they stopped using bcps when they started trying to conceive.
In addition, some women with PCOS reported that their symptoms became
worse after they stopped taking bcps.[19] Researchers are beginning
to think that long-term use of bcps might inhibit the body’s ability to produce
GnRH once bcps are discontinued.
Many health care providers still prescribebcps
for the treatment of PCOS. Women are often given no other options for treatment and are
not made aware of the long-term risks of PCOS, such as diabetes, heart disease,
and reproductive cancers.[20] More disturbing, however, is the overwhelming
number of women who are given bcps when they were first diagnosed with PCOS
and were told not to be concerned about PCOS until they wanted to conceive.
Sixty percent of the women I interviewed were diagnosed with PCOS before
1985. Of those women, 98% were given bcps as their only method of treatment.
Of the forty percent who were diagnosed with PCOS after 1985, 85% were
given bcps as their only method of treatment.
Bcps can be a helpful tool in treating PCOS if used with other forms
of therapy, but alone they seem to be destructive in the long term. Despite
the advancements in PCOS research since the mid-1980s, it seems clear that
women are still being defined in terms of their main biological function--reproduction.
1980-1990:
Hyperandrogenism and Chlomiphene Citrate
During the 1980s understanding
of hyperandrogenism and its relationship to PCOS improved. Hyperandrogenism, a condition characterized
by excess male hormones, was first thought to manifest itself physically as
hirsutism and/or cystic acne.[21] Later, male-pattern baldness, skin tags, and
acanthosis nigricans, brown velvety patches of skin, were added to the list
of hyperandrogenic symptoms.[22] In the 1990s, antiandrogens such as prednisone,
ketoconazole, cyproterone acetate, spironolactone, flutamide, and fenastride
were discovered to be effective treatments for hyperandrogenism because they
suppressed androgen production.[23]
Unlike bcps, which helped stabilize female hormones, antiandrogens blocked
the overproduction of male hormones, thereby taking the approach to PCOS in
an entirely different direction. Whether
researchers in this decade were prompted to research hyperandrogenism in PCOS
because of patient concerns about their appearance or because of a continued
interest in hormone function, the discovery of the possibilities of these
antiandrogens added a new dimension to the study of PCOS and reinvigorated
the interest in PCOS in the medical community.
The other significant
development in the treatment of PCOS during this decade is the use of chlomiphene
citrate in the treatment of infertility. PCOS researchers turned to Chlomid, the brand name for chlomiphene
citrate, to treat infertility for several reasons: an increase in the number of women trying to
conceive and the commodity culture of the 1980s, the publication of research
demonstrating the dangers in using wedge resections to restore ovulation,
and Chlomid’s high success rate and prenatal safety as evidenced in other
incidences of infertility. In addition,
the 1980s witnessed the beginning of the pharmaceutical boom in which medical
practitioners turned to treating illnesses with drugs instead of surgery.
As the Cold War era came
to a close, the women who had put off parenthood to pursue careers in the
1970s were ready to conceive and the media warned working women that if they
waited too long, they might not be able to conceive.[24] In Barren in the Promised Land (1995),
Elaine Tyler May argues that the rise in couples seeking parenthood is the
result of the American ethos in which the work ethic and consumer ethic gave
Americans the illusion of control over every aspect of their lives. She asserts that “reproduction is linked to
both the consumer and producer ethic.
Children are both a reward for hard work and one of the few products
that can still be created by the labor of one’s own body.”[25] Women with PCOS no doubt felt these urges as
well and as a result approaches to infertility in PCOS patients changed dramatically.
The entitlement to parenthood that some Americans
felt during this time revealed itself in the seemingly rabid quest for conception
that lead to the improvements of preexisting fertility treatments, such as
in-vitro fertilization. Fertility
treatments are commodities just like shoes and books, so the race to offer
the best product lead to the dismissal of some methods of treatment and the
introduction of others. Wedge resection,
the most common way of treating infertility in PCOS, met with a great deal
of disfavor during this time. Several
articles were published questioning the effectiveness of the surgery and illuminating
the serious health risks that accompanied the technique, including pelvic
adhesions and fallopian tube scarring. [26] As wedge resection waned in popularity, a
drug therapy approach using Chlomid replaced it.
Chlomid was first introduced as a fertility
drug in 1964, and its reputation as a safe and effective treatment increased
in the 1970s. By the mid-1980s, it
was the most common fertility treatment for women with PCOS, and it remains
the first line of treatment today. Chlomid
is effective in PCOS patients because it improves the LH/FSH ratio.[27] Ovulation can be induced in 80% of women with
PCOS, of whom about one half successively conceive.[28] If Chlomid fails to induce ovulation, then
it is often combined with other drugs that eliminate other variables impeding
ovulation.[29] Doctors occasionally turn to wedge resection
if women fail to conceive any other way.
1990-2000:
Obesity and Insulin Resistance
Although obesity was
a part of the original diagnostic criteria for PCOS established by Stein and
Leventhal, it remained the only one of the four classic symptoms to go untreated
until the 1990s. It is estimated
that between 30 and 50% of women with PCOS are obese,[30] yet doctors
and researchers failed to address the issue scientifically. Enough research existed on the dangers of obesity
for researchers to conclude that obesity exacerbated the other aspects of
PCOS; therefore, weight loss became the first line of treatment for women
with PCOS, but the treatment was placed entirely in the hands of the patients.
If they did not lose weight, then they were only hurting themselves
and making their PCOS symptoms worse. The
connection between PCOS and obesity was not explored fully until this decade
and women with PCOS were treated like any other obese patient who was urged
to follow the diet and exercise programs popular at the time.
Unfortunately, women with PCOS had a great deal of trouble losing weight
on the low fat, high carbohydrate diets supported by the leading medical authorities
in the 1980s and 1990s. As a result
they were subject to criticism by their health care providers and some were
even verbally abused for their inability to lose weight. Tina, a 30-year-old woman who was diagnosed
with PCOS in 1989, recalls a session she had with her gynecologist:
The day my doctor diagnosed me with PCOS was both liberating
and humiliating. I was
overjoyed to finally find the reason behind all of my crazy health problems
and at the same time my doctor had nothing more than criticism
for me. After giving me a three-month supply
of birth control pills, he told me to be sure and lose weight before
I came back to see him. When I told
him that I was following a strict low calorie, low fat diet and
exercising three times a day to just maintain my weight, he snickered and
shook his head as if he didn’t believe me.
I asked if he could recommend another method of losing
weight and he said, “I think you just need to put down the junk food,
turn offyour TV, and get off your ass.” I remember those words exactly, because they
hurt so much. I could
barely hold back the tears until I got to the parking lot and cried
for a half hour. I hated my body and I hated my doctor for making
me feel so bad about myself.
Of course, not all doctors treat their obese patients with the same disdain
as Tina described, but many doctors have little respect for their obese patients
who to them seem out of control and lazy. Roberta Pollack Seid discusses this attitude in Never Too Thin:
Why Women Are at War with Their Bodies (1989):
“Doctors treat their overweight patients in patronizing and often cruel
ways, regarding them as recalcitrant patients who won’t follow orders.”[31] Further support that fat phobia is a problem
in the medical community is the large number of medical-based Web sites that
offer listings of fat-friendly
doctors.
Doctors’ attitudes toward
obesity are most likely shaped by cultural perspectives of body types, which
are complicated by gender roles. Obese
men do not suffer the same kind of abuse that obese women must face.[32] Large men are often described as strong, manly,
capable and protective, while large women are depicted as lazy, out of control,
grotesque, and unfeminine. Contributing
to these stereotypes are culturally accepted theories about weight loss.
The “mechanical model of weight,” first introduced in the technology-driven
culture of the 1960s, has become the predominant way of looking at obesity. Through the development of scientific formulas,
such as the number of calories in a gram of fat or the minutes of exercise
needed to burn off a pound, weight loss seems as simple as basic arithmetic.[33] Women who failed to lose weight or even maintain
their thinness seemed to defy social norms and cultural expectations about
gender roles. Women are supposed to
be in control of their bodies, are not supposed to enjoy eating, and are certainly
not supposed to appear deviant from the ideal female body type.[34] When women deviate from these cultural expectations,
they face consequences, such as public ridicule and unfair treatment by health
care providers.
Assumptions about obesity
dramatically affect women with PCOS, because they often have other symptoms
that also make them appear abnormal, such as hirsutism and acne. Despite these attitudes, or perhaps because
of them, obese women were blamed for aggravating the affects of PCOS. Research began to appear in the 1980s that
implicated obesity as the cause of many PCOS-related health problems, but
instead of trying to find a cause for the obesity in the way that causes for
irregular menstruation, hyperandrogenism, and infertility were pursued, obesity
became a cause in and of itself.[35]
By the late 1980s and
early 1990s, a condition known as insulin resistance attracted the attention
of PCOS researchers. Although some
studies involving insulin resistance and PCOS were published in the early
1980s, mostly by Andrea Dunaif and Walter Futterweit,[36]
the role of insulin resistance in increasing androgen levels did not become
a community-wide interest until research pointed to a connection between acanthosis
nigricans, hyperandrogenism, and insulin resistance.[37] Even though this connection was supported by
a great number of researchers, insulin resistance remained untreated largely
because obesity was thought to be the cause of insulin resistance.
The debate about the
relationship between insulin resistance and obesity gained more interest in
the mid to late 1990s as several studies demonstrated that obesity, at least
in women with PCOS, was independent of insulin resistance.[38] It was determined that women with PCOS are,
as a group, insulin resistant. Even
so, many doctors still believed that obesity caused insulin resistance and
continued to treat their obese patients by urging them to lose weight. Other health care providers, however, seriously
examined the condition of insulin resistance and began experimenting with
insulin resistant treatments, such as drug therapy normally prescribed for
diabetic patients. For example, metformin
hydrochloride (brand name Glucophage) gained support as an insulin regulator.
In the last few years of the 1990s, studies
have demonstrated that women with PCOS who take metformin to control insulin
production not only lost weight, but other symptoms such as hirsutism, irregular
menstruation, and even anovulation were greatly improved.[39] These results seem to suggest that insulin
resistance may be the cause of PCOS; however, the cause of insulin resistance
is still to be determined. Not all doctors have accepted the insulin resistance
theory and even those who have are reluctant to treat it. Of the women I interviewed for this article
only 10% were taking an insulin regulator to control PCOS and the majority
of those women had to persuade their doctors to prescribe it for them. Whether the reluctance of the medical community
to treat insulin resistance with such drugs is the result of a what-and-see
attitude in which doctors give new theories time to be thoroughly analyzed
before they try them or as the result of the still strongly-held belief that
obesity is the result of high fat, high calorie diets and lack of willpower,
most doctors are still treating PCOS in much the same way as they did in the
1980s.
Polycystic Ovarian Syndrome
is a complex health problem that affects 6-10% of all women. In the 65 years since it was first defined,
the diagnosis and treatment methods have changed dramatically according to
cultural assumptions and technological advances. Infertility has always been a major concern for doctors treating
PCOS patients. Hyperandrogenism and
irregular menstruation, as they relate to women’s body images, have also been
important sites of investigation for researchers. While the causes of obesity in women with PCOS were not explored
until the last fifteen years, this symptom of the classic four is finally
be given attention.
The future for PCOS patients
and health care providers seems provocative. As more studies are done concerning the role of insulin resistance
and PCOS, new treatments are sure to develop. Also, there has been a renewed interest in
surgical procedures used to treat infertility in PCOS. The advent of the laser as a surgical tool
has decreased some of the risks associated with earlier surgical techniques.
However, the most significant development in the treatment of PCOS,
at least for the beginning of the new century, is the role of the electronic
discourse communities. Chat rooms, e-mail lists, and discussion boards
all provide forums for PCOS patients to discuss treatment options, causes,
symptoms and other issues related to their personal experiences of dealing
with PCOS. In the last few years,
the interaction in these communities has grown exponentially and continues
to increase as more women are introduced to computer technology. The sharing of knowledge in these forums gives
women the information necessary to better understand PCOS, thereby encouraging
them to seek the best possible treatments for their particular set of symptoms.
Women are educating themselves in the language of the medical community
in ways that were impossible in prior decades.
As a result, women are more in control of the kind of health care they
receive. Although it is impossible to predict the course
that PCOS research will take in the coming years, it is certain that women
with PCOS will be part of it.
[1] Novak’s Gynecology. 12th ed. Ed. Jonathan S. Berek. Baltimore: Williams and Wikins, 1996.
[2] S.L. Tan, Howard S. Jacobs, and Machelle M. Seibel. Infertility: Your Questions Answered. Carol Publishing, 1995. 90.
[3] Novak’s Gynecology, pg. 839.
[4] “Amenorrhea Associated with Bilateral Ovaries.” 29: 181-91.
[5] “Bilateral Ovaries.” 50: 385-96.
[6] See the brief history of PCOS in their book, Hormonal Regulation of the Menstrual Cycle: The Evolution of Concepts. New York: Plenum, 1989. 164-71.
[7] See Elain Tyler May’s groundbreaking book, Barren in the Promised Land: Childless Americans and the Pursuit of Happiness. New York: Basic Books, 1995.
[8] All quotes and paraphrases from women with PCOS are the result of a series of surveys that I administered via an PCOS-focused e-mail list. Of the 955 list members, 125 responded. I have changed their names and some specific details of their stories to protect their anonymity.
[9] The article appeared in the American Journal of Obstetrics and Gynecology, 73 (1957): 954-62.
[10] See Berson and Yalow’s “Radioimmunoassays of Peptide Hormones in Plasma.” New England Journal of Medicine 277 (1967): 640-47.
[11] See Berger et. al. “Gonadotropin Levels and Secretory Patterns in Patients with Typical and Atypical Polycystic Ovarian Disease.” American Journal of Obstetrics and Gynecology 117 (1975): 619-26.
[12] See Iris S. Litt. Taking Our Pulse: The Health of American Women. Stanford, CA: Stanford UP, 1997.
[13] Lee, Christina. Women’s Health: Psychological and Social Perspectives. Behavior and Health Ser. Ed. Christina Eiser and Jan Wallander. London: SAGE, 1998. In addition to Lee’s book, see Steiner-Adair, C. “The Politics of Prevention.” Feminist Perspectives on Eating Disorders. Ed. P. Fallon, M.A. Katzman, and S.C. Wooley. New York: Guilford P, 1994. 381-94.
[14] Tan et. al., pg. 90.
[15] See Janice Delaney, Mare Jane Lupton, and Emily Toth’s historical investigation of menstruation in The Cure: A Cultural History of Menstruation. Rev. ed. Chicago: U of Illinois P, 1988. There are a number of well-written, interesting books on the subject of menstruation: Blood Magic: The Anthropology of Menstruation. Edited by Thomas Buckley and Alma Gottlieb. Berkley: U of California P, 1988; Blood Relations: Menstruation and the Origins of Culture. By Chris Knight. London: Yale UP, 1991; Blood Stories: Menarche and the Politics of the Female Body in Conetmporary U.S. Society. By Janet Lee and Jennifer Sasser-Coen. New York: Routledge, 1996; Her Blood is Gold: Celebrating the Power of Menstruation. By Lara Owen. San Francisco: Harper, 1993; Culture, Society, and Menstruation. By Virginia L. Oleson and Nancy Fugate Woods. New York: Hemisphere, 1986; The Curse: Confronting the Last Unmentionable Taboo: Menstruation. By Karen Houppert. New York: Farrar, Straus, and Giroux, 1999.
[16] See Jafari et. al. “Endometrial Adenocarcinoma and the Stein-Leventhal Syndrome.” Obestric Gynecology 51 (1978): 97-100. Also, the development of adult-onset adrenal hyperplasia, an increase in the number of cells due to the overproduction of androgens, has been linked to cancer. See Spritzer et. al. “Cyprooterone Acetate Versus Hydrocortisone Treatment in Late-Onset Adrenal Hyperplasia. Journal of Endocrinology and Metabolism 70 (1990): 642-46.
[17] Because of fluctuating hormone levels, ovulation predictor kits are generally not effective tools for women with PCOS.
[18] Tan et. al., pg. 92. See also Sagle et. al. “Recurrent Early Miscarriage and Polycystic Ovaries.” British Medical Journal 297 (1988): 1027-028.
[19] Although I failed to find any published support of this idea, several of the women I interview said that their symptoms got worse immediately after they quit taking the birth control pills to start fertility treatments. Also, a couple of doctors that I spoke to felt that birth control pills might inhibit the body’s production of hormones so that when birth control therapy ended, the body was unable to resume its own production.
[20] It has been demonstrated that insulin resistance, if left untreated, develops into diabetes. See note 16, for more information about cancers and PCOS. Several recent studies have indicated that women with PCOS are at high risk for heart disease. For more information, see Birdsall, G.A., et. al. “Associations Between Polycystic Ovaries and Extent of Cornary Artery Disease in Women Having Cardiac Catheterization.” Annals of Internal Medicine 126 (1997): 32-35 and White, H. D., et. al. “Association of Polycystic Ovaries With Coronary-Artery Disease.” Circulation 90 (1994): 128-30.
[21] See Marynick S.F. et. al. “Androgen Excess in Cystic Acne.” New England Journal of Medicine 308 (1983): 981-84 and Reingold, S.B. et. al. “The Relationship of Mild Hirsutism or Acne in Women to Androgens.” Archives of Dermatology 123 (1987): 209-12.
[22] See Barieri, R.I. and K.J. Ryan. “Hyperandrogenism, Insulin Resistance, and Acanthosis Nigricans Syndrome: A Common Endocrinopathy with Distinct Pathophysiologic Features.” American Journal of Obstetrics and Gynecology 147 (1983): 90-101.
[23] See Couch, R.M. et. al. “Kinetic analysis of Human Adrenal Steroidogenesis by Ketoconazole.” Journal of Clinical Endocrinology and Metabolism 65 (1987): 551-55; Givens, J.R. “Treatment of Hirsutism with Spironolactone.” Fertility and Sterility 43 (1985): 841-43; Miller, J., et. al. “Antiandrogen Treatment in Women with Acne: A Controlled Trial.” British Journal of Dermatology 114 (1986): 705-16; Miller, J. and H.S. Jacobs. “Treatment of Hirsutism and Acne with Cyproterone Acetate.” Clinical Endocrinology and Metabolism 15 (1986): 373-89; Rittmaster R.S. and Givner M.L. “Effect of Daily and Alternate Day Low Dose Prednisone on Serum Cortisol and Adrenal Androgens in Hirsute Women.” Journal of Clinical Endocrinology and Metabolism 67 (1988): 400-03.
[24] Faludi, Susan. Backlash: The Undeclared War Against American Women. New York: Crown, 1991. pg. 24-27.
[25] May, Elaine Tyler. Barren in the Promised Land: Americans in the Pursuit of Happiness. New York: Basic Books, 1995. p. 212.
[26] See Gruhn and Kazer, pg. 171.
[27] See Kerin, J. F., et. al. “Evidence for a Hypothalamic Site of Action of Clomiphene Citrate in Women.” Journal of Clinical Endocrinology and Metabolism 61 (1985): 265-68.
[28] See Gysler, M., et. al. “A Decade’s Experience with an Individual Clomiphene Treatment Regimen Including Its Effect on the Postcoital Test.” Fertility and Sterility 37 (1982): 161-67; Hammond, M. G., et. al. “Factors Affecting the Pregnancy Rate in Clomiphene Citrate Induction of Ovulation.” Obstetric Gynecology 62 (1983): 196-202.
[29] See Lobo, R. a., et. al. “Clomiphene and Dexamethasone in Women Unresponsive to Clomiphene Alone.” Obstetric Gynecology 60 (1982): 497-501.
[30] Tan, et. al., pg. 92.
[31] Seid, Roberta Pollack. Never to Thin: Why Women Are at War with Their Bodies. New York: Prentice Hall, 1989. p. 23.
[32] Mitchell, Jean. “’Going for the Burn’ and ‘Pumping Iron’: What’s Healthy About the Current Fitness Boom?” Fed Up and Hungry, pg. 156-74.
[33] Seid, pg. 12-15.
[34] Fursland, Annie. “Eve was Framed: Food and Sex and Women’s Shame.” Fed Up and Hungry: Women, Oppression and Food. Ed. Marilyn Lawrence. New York: Peter Bedrick Books, 1987. 15-26.
[35] See Bates, G.W. and N.S. Whitworth. “Effect of Body Weight Reduction on Plasma Androgens in Massively Obese Women.” Journal of Endocrinology 14 (1981): 113-18; Pasquali, R. et. al. “Clinical and Hormonal Characteristics of Obese Amenorrheic Hyperandrogenic Women Before and After Weight Loss.” Journal of Endocrinology and Metabolism 68 (1989): 173-79; and Kopeman, P.G., et. al. “The Effect of Loss on Sex Steroid Secretion and Binding in Massively Obese Women.” Fertility and Sterility 38 91982): 406-09.
[36] Dunaif, Andrea, et. al. “Characterization of Groups of Hyperandrogenic Women with Acanthosis Nigricans, Impaired Glucose Tolerance and/or Hyperinsulinemia.” Journal of Clinical Endocrinology and Metabolism 65 (1987): 499-507; Futterweit, Walter and J. L. Mechanick. ‘Polycystic Ovarian Disease: Etiology, Diagnosis, and Treatment.” Comp Therapy 14 (1988): 12-20.
[37] Barberi, R. L. and K. J. Ryan. “Hyperandrogenism, Insulin resistance and Acanthosis Nigricans Syndrome: A Common Endocrinopathy with Distinct Pathophysiologic Features.” Am J Obstet Gynecol 147 (1983): 90-101.
[38] Dunaif, Andrea et. al. “Profound and Peripheral Insulin Resistance, Independent of Obesity, in Polycystic Ovarian Syndrome.” Diabetes 38 (1989): 1165-74.
[39] Ehrmann, D. A., et. al. “Effects of Metformin on Insulin Secreation, Insulin Action, and Ovarian Steroidogensesis in Women with Polycytic Ovarian Syndrome.” J of Clinical Endocrinol Metab 82 (1997): 524-30.