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Research

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Managing Polycystic Ovary Syndrome
What Our Patients Are Telling Us Journal of Holistic Nursing
American Holistic Nurses Association
Volume XX Number X
Joan Crete, DNP, MSN, WHNP-BC March XXXX xx-xx
© 2011 AHNA
Pamela Adamshick, PhD, RN, PMHCNS-BC 10.1177/0898010111398660
Moravian College, Bethlehem, Pennsylvania http://jhn.sagepub.com

Women with polycystic ovary syndrome (PCOS) experience symptoms such as irregular menses, hirsut-
ism, and acne, and are at heightened risk for developing obesity, metabolic syndrome, diabetes mellitus,
infertility, and some cancers. Data also indicate an inverse correlation between PCOS and health-
related quality-of-life indicators and self-image. Purpose: The purpose of this study was to describe the
lived experience of women with PCOS in the management of their disorder and the meaning of that
experience for them. Design: This qualitative study was conducted using a phenomenological approach
based on the guidelines of Van Manen. Method: Individual, semistructured interviews were completed
with 10 participants who were diagnosed with PCOS and managed by a health care practitioner(s)
within the past 5 years. Data were analyzed using the process of hermeneutic phenomenological reflec-
tion. Findings: The four major themes that described women’s lived experience of managing PCOS
were frustration, confusion, searching, and gaining control. Conclusions: Women with PCOS face
many challenges in managing their disorder and desire to gain control, balance, and well-being through
a comprehensive treatment plan. The findings have implications for health care providers in addressing
quality of life issues and overall health outcomes.

Keywords:  women’s health; chronic disease; holistic care; quality of life; advanced nursing practice; women

Background pathophysiology of PCOS is less clear than the mani­

Polycystic ovary syndrome (PCOS) is the most com-
mon endocrine disorder in women of reproductive
age, with an estimated prevalence in the United States
between 10% and 25% depending on the definitions
used for diagnosis (Benjamins & Barratt, 2009; Jones,
Hall, Balen, & Ledger, 2008; Table 1). Women with
PCOS may present with complaints of infertility,
menstrual irregularities, hirsutism, acne, alopecia,
or obesity (Lifchez & Jasulaitis, 2009; Magnotti &
Futterweit, 2007; Snyder, 2006). Endocrine abnor-
malities include anovulation, hyperandrogenemia,
and insulin resistance and links the condition to
potential chronic diseases associated with metabolic
syndrome (Futterweit, 2007; Radosh, 2009; Setji, &
Brown, 2007; Stankiewicz & Norman, 2006). The
festations. There is agreement that a disruption in the
hypothalamic–pituitary–ovarian axis exists, which
creates a hyperandrogenemia state. This hormonal
imbalance is responsible for the reproductive and
metabolic abnormalities associated with the syndrome
(Futterweit, 2007; Noller & Paulk, 2006; Stankiewicz
& Norman, 2006).
Women with PCOS receive care in various set-
tings, with their specific symptom(s) and/or age direct-
ing them to the expertise of a primary care prac­titioner
or specialist. Initial management is aimed at addressing
Authors’ Note: Please address correspondence to Pamela
Adamshick, PhD, RN, PMHCNS-BC, Assistant Professor of
Nursing, Nursing Department, Moravian College, 1200 Main
Street, Bethlehem, PA 18018; email: adamshp@moravian.edu.

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2   Journal of Holistic Nursing / Vol. XX, No. X, Month XXXX
Table 1. Diagnostic Criteria for Polycystic Ovary Syndrome
National Institutes of
Signs and Symptoms Health (Two Required)
Hyperandrogenism × ×
Oligoamenorrhea or × ×
amenorrhea
Polycystic ovaries by
ultrasound diagnosis
Source: The American College of Obstetricians and Gynecologists (2008, Bulletin 108).
acute problems and then to controlling and/or pre-
venting chronic complications (Benjamins & Barratt,
2009; Stankiewicz & Norman, 2006; Radosh, 2009).
Literature suggests PCOS diagnosis is difficult because
of the variation in presentation (Radosh, 2009; Teede,
Deeks, & Moran, 2010). This presents a challenge that
may delay diagnosis and management as suggested by
Snyder (2006).
The majority of PCOS articles and resources
support the importance of a clinical diagnosis and
medical management based on the patient’s symp-
toms and complaints. Lifchez and Jasulaitis (2009)
suggest the infertile woman presenting with acne,
hirsutism, menstrual irregularity, or obesity deserves
a work up of PCOS. The adolescent with a similar
presentation should raise concerns of PCOS as well
(Benjamins & Barratt, 2009). Additionally, American
College of Obstetrics and Gynecology (ACOG) guide-
line (2009) supports PCOS evaluation in all women
with hyperandrogenism, menstrual irregularity, and
polycystic ovaries. However, most of the troubling
effects of PCOS fall within the psychosocial realm.
This component of the condition has recently emerged
in the literature as the effects of PCOS on health-
related quality of life (HRQoL) and other mental
health issues are explored. Coffey, Bano, and Mason
(2006) and Jones et al. (2008) found diminished
HRQoL in women with PCOS. Other authors have
had similar findings that reflect increased anxiety
and depression as well as decreased sexual satisfac-
tion in this population (Deeks, Gibson-Helm, &
Teede, 2010; Hahn et al., 2005; Himelein & Thatcher,
2006).
Medical management specific to the clinical find-
ings and desired outcomes is consistent. The ACOG
2009 practice bulletin as well as practice guides
written by Stankiewicz and Norman (2006) and the
University of Texas nurse practitioners (National
Guidelines, 2006) agree that lifestyle chan­ges and
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Rotterdam Consensus Androgen Excess Society
Criteria (Two out of Three) (Hyperandrogenism Plus One Other)
×
×
× ×
medical intervention produce positive effects. Inter­
estingly, incorporation of psychosocial support is only
found in the University of Texas guidelines. As sug-
gested in the recent article by Teede et al. (2010),
inclusion of the psychological features of this condi-
tion should be an important piece of the management.
The significance of quality of life issues cannot be
ignored, yet the literature provides few studies that
explore the psychosocial aspects of living with PCOS
and coping with psychological distress. Snyder’s
(2006) phenomenological study described the mean-
ing for women of living with PCOS. The researcher
found the study participants shared a common feel-
ing of being different from other women and wanting
to be normal. Studies to date have neither examined
women’s experience of managing their PCOS nor
described the meaning of management of this chronic
syndrome in their lives. The current study addresses
this knowledge gap in the literature. Considering the
high prevalence and enormous physiologic and psy-
chosocial toll of PCOS, health care providers need
a better understanding of the meaning of PCOS
management in patients’ day-to-day functioning and
self-image.
Purpose
This qualitative study was conducted to ascertain the
lived experience of women with PCOS in managing
their disorder and to understand the meaning of that
experience for them. The study is important for patient
care in that it adds to the body of knowledge related to
PCOS management, providing insight into women’s
perspectives about their care and well-being. A pri-
mary aim of the study is to address the importance
of a holistic approach in the management of women
with PCOS resulting in an improved quality of life.
This holistic approach supplements the traditional
 Managing Polycystic Ovary Syndrome / Crete, Adamshick   3

Table 2.  Participants

Participant Age (Years) Ethnicity Level of Education Years of Diagnosis No. of Providers
 1 50 Caucasian College 12 2
 2 32 Native American College 7 1
 3 34 Caucasian High school 6 1
 4 20 Caucasian High school 5 2
 5 25 Caucasian College 7 1
 6 33 Latina College 11 6
 7 28 Latina High school 3 3
 8 35 Caucasian High school 5 1
 9 42 Caucasian High school 16 5
10 27 Caucasian college 2.5 1

medical model by identifying the psychosocial and symptom relief and/or PCOS management from one
emotional components of care for this population. to six different providers.

Method
Study Design
For the purpose of examining the meaning of women’s
experience in the management of PCOS, a phenom-
enological approach was suitable. Extracting the
essence of their experience through the interpreta-
tion of their sharing and perceptions allowed insight
into their experiences (Van Manen, 1990). Although
acknowledging each person’s unique process, this
insight recognized commonalities of the group’s exp­
eriences that were organized into themes.
Sample
A purposive, convenience sample was generated from
a pool of women who met the inclusion criteria: age
18 years or older, diagnosed with PCOS and man-
aged within the past 5 years, and able to speak and
understand English. A letter identifying the design
and purpose of the study was mailed by the research-
ers to gynecology offices associated with the hospital
network, and names were forwarded. These women
were invited to participate in the study. Participants
were interviewed in the order in which their affirma-
tive responses were received. The 10 who comprised
the study participants ranged in age from 20 to 50 years,
with ethnic backgrounds of one American Indian, two
Latino, and seven Caucasian (Table 2). The length
of time since diagnosis with PCOS for these women
varied between 2½ to 16 years at the time of enroll-
ment in the study. Participants had sought care for
Setting
The women were managed by various providers within
a large hospital network in the Mid-Atlantic region
of the United States. One of the researchers, the
women’s health nurse practitioner, initially contacted
each participant by phone to explain the study and
arrange a time for the interview. The personal inter-
views were conducted by the same nurse practitio-
ner in a private room in the hospital library or office
setting.
Protection of Human Participants
The hospital network institutional review board app­
roved the study. The study was explained fully and a
written consent was obtained prior to the interview.
The participant was given the opportunity to with-
draw at any time during the study and understood
that involvement in the study would not influence
her care management. In the taped interviews, the
participants were identified by number only.
Data Collection
Prior to engaging in participant interviews, the wom-
en’s health nurse practitioner, who conducted the
interviews, discussed her preconceived notions about
PCOS management with her coresearcher. This pro-
cess of becoming aware of assumptions was done to
bring these beliefs into the open so that both res­
earchers could be aware of them and the interviewer
could attempt to hold them in abeyance, a concept

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4   Journal of Holistic Nursing / Vol. XX, No. X, Month XXXX
referred to as bracketing assumptions (Husserl, 1970).
During data analysis, the coresearcher, who is not a
women’s health practitioner, provided a balanced
perspective to any assumptions about the manage-
ment of PCOS. She often questioned, refuted, and
clarified ideas and discussion points to help reduce
bias or assumptions as analytical decisions were made.
The audio-taped interviews averaged an hour in
length and were conducted in one uninterrupted
meeting. The participants were encouraged to share
their experiences through a semistructured inter-
view process. The opening question was framed as
“What is your experience in terms of diagnosis and
management of your PCOS?” Open-ended probes
were used to explore topics regarding when and how
the diagnosis of PCOS was made, recommendations
by providers, and participants’ feelings about the
overall management of their condition. The tapes
were transcribed verbatim by a hospital network tran-
scriptionist who was paid an hourly rate.
At the conclusion of each interview, the inter-
viewer summarized and then verified main points from
the interview with the participant. The nurse practi-
tioner who conducted the interview compared the
tapes with the written transcripts for accuracy. The
written transcripts were then returned to the par-
ticipants with a letter requesting review for correc-
tions or comments. A second mailing with a complete
list of the core themes was sent later in the research
process. None of the participants refuted the themes
as presented to them in the correspondence.
Data Analysis
The process of hermeneutic phenomenological ref­
lection as described by Van Manen (1990) was used
to analyze the data. Through this reflection the
essential meaning of the lived experience of women’s
mana­gement of PCOS and its meaning for them can
be grasped. Data collection was concurrent with
data analysis and continued until there was replica-
tion of the emerging themes and no new themes
were identified. Data saturation was achieved after
interviews with 10 participants. Transcripts of inter-
views were sent to the research team members imme­
diately on completion of each interview. Three res­earch
team members (the two authors and a women’s
health nurse practitioner) read through interview
transcripts several times to allow for reflection on
the whole of the data. Each team member indepen-
dently highligh­ted particular phrases and sections
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that represented “structures of the experience” (Van
Manen, 1990, p. 79). After this individual process,
the researchers met several times and collectively
examined their highlighted sections to identify inci-
dental themes of the phenomenon. Incidental themes
were descriptive of the phenomenon, but not neces-
sarily unique to the experience of women’s manage-
ment of PCOS symptoms. Through team discourse,
groupings were formed of structures reflecting the
experience, similar incidental themes were clustered
together, and ideas for essential themes were identi-
fied. Final themes were determined based on their
quality of being essential to describe the phenome-
non, and without which the experience of manage-
ment of PCOS symptoms would be incomplete (Van
Manen, 1990).
The researchers followed hermeneutic principles
in explanation and interpretation of the themes. In
what Heidegger (1962) calls the circle in under-
standing, our shared human practices allow us to
understand and be involved in something. The pro-
cess allowed for a perspective of the phenomenon,
placing the participants in the context of their envi-
ronment and permitting an understanding of the
experience for the participants. The meaning of the
experience of achieving management of PCOS
for women with the disorder emerged through this
process.
Sandelowski’s (1986) framework is applied to
demonstrate the rigor of the study. Four criteria
that reveal trustworthiness in a qualitative study are
credibility, fittingness, auditability, and confirmabil-
ity. Credibility, or truthfulness, for this study was
achieved by individual review by each team mem-
ber, return of data transcripts and the suggested
themes to the participants for validation, and inclu-
sion of direct quotations from participants in the
formal written summary. Fittingness was achieved
by the discussion of similarity of the study findings
with other literature on women’s symptoms of PCOS
and their management. Auditability was achieved by
documenting the process of inquiry, showing the
initial problem identification and the decisions
made for a purposeful exploration of the topic
through a phenomenological method. The res­
earchers maintained an audit trail of the findings,
illustrating the identification of structures of the exp­
erience, their clustering, and eventual incorporation
into themes. Confirmability was achieved when the
criteria of credibility, fittingness, and auditability were
demonstrated.

Findings
The women’s stories of their experience of manage-
ment of PCOS depicted a process of feeling frustrated
about their care management, along with a prevailing
sense of confusion, then trying to understand their
health situation, which included phases of searching
for answers and attempting to gain control. The
major themes that emerged to describe the women’s
lived experience of management of PCOS were frus-
tration, confusion, searching, and gaining control.
Theme 1: Frustration
Frustration was a dominant theme of this study. All
participants voiced this as part of their lived experience
of managing PCOS. One area of frustration centered
on interactions with health care providers, which was
reflected in a lack of confidence in providers along
with a sense of inattentiveness from them. One par-
ticipant described her situation as follows:
. . . they’ll read through my history and they’ll see it
[PCOS diagnosis] and you can tell by . . . how they
kind of skip over it. They don’t address it because
I don’t think they know what to do for it.
The same participant remarked on the health care
provider’s inattentiveness to her troublesome symp-
toms of weight gain and hirsutism:
I think he knows about it but he doesn’t take the
time to ask . . . he never looked at them [whiskers].
He never asked, “Do you shave them?” He doesn’t
say, “How’s your diet going or are you losing any
weight?” I don’t think he’s interested.
Participants’ frustration was heightened by the
need to see several health care providers before the
diagnosis of PCOS was made. Associated with health
care visits was the perception of participants that
providers were looking for a “quick fix” for the partici-
pant’s symptom. One PCOS client, with the complaint
of irregular menses, described the one-dimensional
treatment she received:
I suffered from really bad headaches and so I didn’t
want to go back on the pill, but that always seemed
to be the quick fix just to regulate my period. So it
was kind of setting the PCOS aside, we’ll just put
you on the pill and then you you’ll be regular.
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Managing Polycystic Ovary Syndrome / Crete, Adamshick   5
Similarly, another participant described that her treat-
ment was symptom-based rather than comprehensive
for PCOS:
Nobody ever really sat down and said, “This is what
you have, this is the problem.” They just said, “Yes,
this is the problem, but now since you want to get
pregnant, we could do this to fix it.”
The experience of frustration in managing symp-
toms was worsened by the participants’ emotional
vulnerability as they dealt with an uncertain diagnosis
and lack of improvement under prescribed treatments.
One client felt that she was “going crazy” as health
care from two different practitioners did not address
her emotional swings. She explained one of her visits:
He probably thought I was crazy, because I was get-
ting worse at this point. I felt like I was really hor-
monal, but I didn’t understand why. I was all over
the place. It was very, very emotional.
Another participant, though she had been diag-
nosed with PCOS for 12 years, remained frustrated
with the management of her treatment, including
lack of symptom improvement. Her description cap-
tures the emotional upheaval of unrelenting symp-
toms and the ordeal of what the problem is.
I still have a body image issue. You know how they
call it the “bearded lady syndrome.” Ladies years ago
used to get it and they didn’t know what it was. They
used to get whiskers and humps on their back and
big round stomachs. If I remember what causes it
I don’t get as upset. Sometimes I don’t feel like
explaining to everybody around me why I have this
look . . . I don’t feel like going through the ordeal of
what the problem is.
Participants’ lived experience included frustration
over lack of symptom improvement, primarily with
weight control and hirsutism. One participant also
discussed persistent pain she endured for 11 years.
I am still taking the medication and I’m still having
the pains . . . I was saying, “Here, listen, these pills,
I’ve been taking them for so long. I see no improve-
ment except for the acne.” The pain is still there, so
am I supposed to live with this pain for the rest of
my life? Even when I have sexual intercourse, I can’t
even pull through because of the pain.
6   Journal of Holistic Nursing / Vol. XX, No. X, Month XXXX
For some participants, frustration led to blaming,
either of the self or the provider. One client, feeling
punished, tried to make sense of the experience:
I don’t do drugs. I don’t drink . . . I don’t know what
I did wrong. I always think to myself I had two sis-
ters that got pregnant fine, and what’s wrong with
me, what did I do wrong? I really don’t understand.
In another instance, the client, 18 years old at the
time of diagnosis, was willing to assume blame regarding
the frustrating lack of symptom management, stating,
I was scared. I don’t think I really asked the right
questions, or knew what to ask even.
On the other hand, some participants who were
frustrated with their care management put blame on
providers. One participant expressed distress at not
knowing the full implications of PCOS on her over-
all health.
Nobody really managed it [PCOS] at all. They never
told me . . . when I was diagnosed with PCOS, that
yes, this is stopping you from conceiving. However,
this is something that is part of your overall health
just so you know this is something you have to keep
watch of. It’s going to cause different issues in your
life. Never, never told me that.
For another participant, the frustration she exp­
erienced with management of her care caused her to
blame providers for not clearly stating the magni-
tude of her condition.
If I would have known that something was wrong, I
probably would have gone to someone else. Hey, can
you do some tests, is there anything wrong, what can
I do? Look at in the earlier stages. Is there something
I can do to prevent it earlier than [age] twenty?
Another participant, diagnosed 3 years previously,
felt there were several areas of accountability for the
mismanagement of PCOS.
It’s been frustrating. There’s not enough informa-
tion. It’s still not recognized enough, I don’t think.
The stories that I have, so many other women have.
So that means that there’s not that many doctors
out there who are paying either enough attention or
they really don’t know where to go with it.
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Theme 2: Confusion
In their lived experience of PCOS management, every
participant described a sense of confusion, espe-
cially prior to the diagnosis, but also continuing dur-
ing treatment. Confusion clustered into categories
of diagnosis and implications of the disease process.
The experience of confusion about diagnosis was
often of long duration, including visits to more than
one provider and multiple tests. Participants indi-
cated that tests were done, but rationales were not
provided, leaving clients with uncertainties. One cli-
ent recalled her experience of having an ultrasound
of her ovaries:
They really don’t talk to me about it. I ask questions
and they try to explain and I don’t get anywhere.
One participant who suffered with heavy and
erratic menstrual cycles from age 11 to age 16 was
diagnosed with PCOS at age 16. Though she is now
age 23, her comments reflect the impact she felt
regarding health care providers’ basic knowledge defi-
cit about PCOS.
No one really sat there and told me anything. They
told me when I first started that not much was too
well known at that point, so they didn’t tell me
much.
In a similar vein, one participant shared her per-
spective that she had assisted the health care provid-
ers to finally make her diagnosis. She noted,
The doctors don’t know much about it. I think what
they do is read the research and the research has no
definitive treatment plan, so they don’t have a treat-
ment plan and I have to figure out my own treat-
ment plan . . . Yes, I think I told them about it.
For another participant, the experience of con-
fusion about her diagnosis led to mistrust of provid-
ers. After seeing two providers, one for management
of hirsutism and one for pelvic pain, she was informed
by a third provider that she had PCOS. The partici-
pant commented,
So I started to ask questions . . . I don’t trust this
doctor anymore because he didn’t tell me I had
polycystic ovaries, so I started questioning this
doctor, [third doctor] and she told me it was
treatable.

The experience of understanding risk factors and
the related management of their PCOS was the topic
mentioned most often by the participants as a source
of confusion. Participants were clearly bothered by
not understanding the possible health risks posed by
PCOS. In their lived experience, the implications of
their diagnosis were often presented in vague or par-
tial terms. One participant had this to say,
To this day I don’t know what the risk factors are.
I do know the symptoms because that’s the only
thing that was explained to me. The first thing I would
tell him [health care provider] is when you have
patients that have the diagnosis, you have to sit down
and take the time, not rush through the visit.
Theme 3: Searching
In response to their experience of feeling frustrated
and confused by their care management, participants
engaged in searching activities, formal and informal,
to understand and address their health circumstances.
Searching activities were ongoing for participants,
depending on the stage of PCOS and the related con-
cerns at that time. One client who had been diag-
nosed with PCOS for 4 years found that a casual
conversation with a peer stimulated her to look fur-
ther for treatment management.
Then I ran into a coworker at work and she and I got
talking. She actually was pregnant and had PCOS
and was on metformin. That’s when I started getting
really interested in it and the types of treatment
available for PCOS. Is it more than just birth con-
trol pills?
Other participants spoke of searching for more
or different education from the provider, but experi-
encing miscommunication in that regard.
I just would have been happier if I would have gotten
a little bit of literature and talking doesn’t really do
it. I like to read about it, figure out my options. She
really didn’t explain what is going to happen if I take
this type medication, if I take that. I just wanted a
little more information and I really didn’t get it.
Similarly, another participant spoke of wanting
to know about her risk for metabolic syndrome after
her experience of gestational diabetes.
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Managing Polycystic Ovary Syndrome / Crete, Adamshick   7
No, no one ever said anything. My mother has told me
several times that I need to watch my sugar because of
ending up with diabetes with my next pregnancy.
Several participants spoke of activities that invo­
lved formal searching for answers through use of
online resources or printed materials. Common sources
included WebMD and other Internet sites and books.
Participants’ formal searching ranged from prediag-
nosis investigation about symptoms to postdiagnosis
clarification of information that was initially over-
whelming or complex. The usefulness of these mea-
sures in the management of symptoms was variable.
A prediagnostic Internet search left one participant
with heightened anxiety over her symptoms.
The pain on my ovary made me see the doctor. I would
of course go on the Internet and I’d find I think I have
cancer. My mom said we were going to the doctor and
everything was fine in the end, but 18 years old and
you see what the pain means on the Internet.
Another participant’s search to clarify information
overwhelmed her to the point of tears.
She (provider) said it has to do with insulin resis-
tance, which I didn’t understand. She was throwing
a lot of information at me, but I didn’t get it, so I looked
it up online. I cried because of the difficulties of the
condition and eventually what could happen with
my developing diabetes and heart problems.
In one participant’s experience, the formal search-
ing and reading was helpful to pull together the
symptom picture that she had noticed in herself and
verify its relationship to the PCOS diagnosis.
I’ve done all my own research and reading, and in
retrospect I do have some of the other symptoms,
but I did not know that that’s what they were until
I read up on it. I do have some dark facial hair. I do
have the weight gain problem. The hormonal up and
down mood swings type thing. I have some of them
and I didn’t realize they were connected until I was
diagnosed.
Theme 4: Gaining Control
The lived experience of PCOS management for the
participants involved a process of gaining control of
8   Journal of Holistic Nursing / Vol. XX, No. X, Month XXXX
PCOS, including symptoms, knowledge, and eventu-
ally the overall treatment. The initial importance for
participants was control of their symptoms. This was
achieved through self-treatment and self-education.
Almost every participant’s experience included attempts
at some type of self-treatment for symptoms of hir-
sutism, acne, and weight control. Self-treatment was
the first avenue for gaining control.
Over time, the participants’ experience of frustra-
tion, confusion, and searching led them to take con-
trol of their PCOS through self-education. It was
important to participants to gain understanding of
the disease itself and the long-term implications for
their health. One participant, who had been diagnosed
7 years previously, explained her efforts at taking
control, which occurred only recently.
That’s all they told me—that you have a potential
for getting diabetes. I’m telling you right now they
didn’t really inform me about anything much. This is
what I found out later on from the Internet. Thank
God for the Internet!
Another participant used a combination of infor-
mation from the provider along with her own res­
earch and self-education to enhance her sense of
control and understanding about PCOS.
Actually I do remember her [nurse practitioner] say-
ing, because it was an issue with me being heavy, if
I lost weight, it would correct itself. And I do remem-
ber seeing that online. A lot of it was about infertility
. . . that stands out because that was upsetting.
Despite the fact that this participant found the online
information “very successful, very helpful,” she desired
more education from the provider:
And have them tell me what to look for and what to
expect and this is why.
Ultimately, the experience of gaining control
meant a comprehensive treatment plan to address
the underlying diagnosis. It was essential to get the
appropriate treatment for the diagnosis. Participants’
ability to gain control often meant visits to several
doctors, but rarely total management. One partici-
pant has been diagnosed with PCOS for the past
12 years, and continues to see specialists for her
various health problems. She states that she has had
40 doctors’ appointments in the past 8 months.
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However, she is still struggling to gain control of
symptoms and overall treatment.
I think the weight gain of the metabolic problem is
so resistant. It’s got to be researched because you
can’t go around with 100 pounds extra in your stom-
ach. It’s important that they figure out metabolically
how to get rid of these round stomachs.
Another participant described her ongoing efforts to
gain control, having seen two specialists for PCOS
treatment.
I don’t think it’s managed at all. I mean they man-
aged the symptom of not being able to get pregnant
quite well, but not the issue itself, the fact that I do
not get regular periods and I obviously have a hor-
monal imbalance. I really think that my OB should
have attempted to solve the problem before shipping
me off somewhere else.
One participant, who is 7 years postdiagnosis,
described a satisfactory experience of gaining con-
trol after visits to two different specialists.
I would summarize my first experience as naïve,
unaware, a lot of questions and I felt like it was just
a simple PCOS. I thought it was strictly just your
hormones and ovaries. I thought it had nothing to
do with anything else. I had a very limited view of
what it was, and here I’m much more educated and
I think my doctors are aware and they are able to talk
to me a little bit more.
Discussion
The meaning of the experience for women in man-
aging PCOS was getting to a place of balance and
well-being that allowed for a high quality of life,
understanding of their health problem, and gaining
control through a comprehensive treatment plan.
This qualitative research provides new information
that expands on the existing knowledge. It comple-
ments Synder’s (2006) study findings of women feel-
ing different from other women and the cited common
themes of searching for answers and gaining control.
What the current study adds is the women’s exp­
erience of their overall care management and their
perspective of the meaning of that experience in their
lives. Moving beyond symptom management, women

voiced the need to fully understand the implications
of their diagnosis and to assert their right to attain
expert PCOS management in order to achieve bal-
ance and well-being in their lives and promote their
own health.
The findings can be understood in terms of Orem’s
nursing theory of self-care. This theory states that
individuals engage in self-care, which comprises those
activities performed independently by an individual
to promote and maintain personal well-being through-
out life (Pender, Murdaugh, & Parsons, 2002). The
study participants’ experience of management of
PCOS reflects their priority for self-care as they
searched for answers that would allow them to achieve
and maintain personal health and well-being.
In applying Orem’s theory to the role of the nurse,
nursing’s approach to health intersects with Orem’s
theory of self-care, such that nursing care supports
health promotion and maintenance by teaching,
guiding, and supporting (Pender et al., 2002). The
nurse’s role in self-care as it relates to management
of PCOS involves application of four cognitive
operations that fulfill phases in Orem’s theory. The
four operations, diagnostic, prescriptive, regulatory,
and control, are completed collaboratively with the
client and may vary sequentially, based on the chang-
ing self-care needs of the client (Berbiglia, 2002). In
the diagnostic phase, the nurse’s role with the PCOS
client focuses on establishing a therapeutic relation-
ship and diagnosing self-care deficits. The prescrip-
tive phase of the nurse–client collaboration achieves
therapeutic self-care methods while the regulatory
phase encourages client learning, enhances interest
in self-care, and supports client feelings of accom-
plishment about well-being. In the control phase, the
client and nurse evaluate the client outcomes in terms
of correct and appropriate regulation of functioning,
developmental change, and ongoing adaptation in
self-care (Berbiglia, 2002).
The women in this study represented a wide age
range, yet the feelings and experiences revealed in
their stories were similar. Attesting to the pervasive
nature of PCOS, their descriptions captured living
with their symptoms over time and the evolving pro-
cess of trying to manage their health problems, reg­
ardless of age.
Recent discovery correlating the physical symp-
toms of PCOS with diminished HRQoL cannot be
ignored (Coffey et al., 2006; Hahn et al., 2005). Given
the challenge of living with PCOS and its effects on
HRQoL as well as the management challenges that
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Managing Polycystic Ovary Syndrome / Crete, Adamshick   9
nurses and other health care providers encounter, it
is understandable that women would have the com-
mon exp­eriences revealed in this study. The man-
agement guideline written by the nurse practitioners
at the University of Texas (National Guidelines,
2006) includes a psychosocial history with the
assessment. Their management incorporates expla-
nation of the diagnosis and associated risks. The
guidelines further recommend lifestyle management
and pharmacologic interventions as well as websites
of support groups and educational sites. This holistic
approach captures the spectrum of needs for the
PCOS patient.
Implications and Recommendations
for Further Study
The themes common to women diagnosed and man-
aged for PCOS identify areas where providers can
intervene to improve outcomes and HRQoL issues.
Agreement concerning the complexity of this syn-
drome and the need for a comprehensive and holis-
tic approach is the initial step. An understanding of
the pathophysiology and psychosocial effects can
guide the management. Treatment goals that address
acute symptoms and that prevent or control chronic
complications may also enhance HRQoL.
Providers might consider asking PCOS clients
how this disorder affects them and to complete a
HRQoL questionnaire during the initial work up.
Management incorporating the client’s concerns
with an evaluation of associated risks is paramount.
Many women do not seem to understand the chro-
nicity of the disorder or how their current com-
plaint fits into the general syndrome. Many of the
study participants lacked knowledge of the possible
health implications. Comments from the partici-
pants reflected a need for transparency concerning
the diagnosis of PCOS, its management, and pos-
sible associated hea­lth risks. Participants also
voiced the holistic nature of their needs, such that
emotional, physical, and quality-of-life issues were
equally important in the spectrum of managing
PCOS. By accepting patients’ need for control,
practitioners are in a position to distribute educa-
tional resources and discuss options, which would
integrate women’s input with management goals.
One possible solution to the over­whelming respon-
sibility in managing these cases may be a flow sheet
or protocol listing management steps, beginning
with a complete history, necessary elements of the
10   Journal of Holistic Nursing / Vol. XX, No. X, Month XXXX
physical examination, and laboratory testing to
education and possible referrals for psychosocial
concerns. Educational handouts and information
about websites and support groups could be
included.
Further research in this area could incorporate
pretreatment and posttreatment studies that com-
pare the effects of PCOS education in control and
experimental groups. Other work may use HRQoL
questionnaires before and after interventions to eva­
luate the impact. Another area of interest would be
obtaining health care provider feedback relating to
the management of women with PCOS.
Strengths and Limitations
The strength of the study is the participants, whose
experiences clearly informed the study and provided
the meaning of PCOS management for women with
the disorder. The primary limitation of this study is the
small sample size. Although appropriate for this type
of study, it may not be representative of women in
all settings or from different socioeconomic or cul-
tural groups. The study may also be limited by inter-
pretation in that others reviewing transcripts may have
identified themes differently. However, the process of
collaborative analysis in the research team enhances
the validity of the analysis.
Conclusion
PCOS clients present a challenge to providers
across disciplines. Physical and psychosocial effects
of living with PCOS are well-documented (Hahn
et al., 2005; Noller & Paulk, 2006; Teede et al.,
2010). The study findings identify the desire of
women with PCOS to gain control, balance, and
well-being through a comprehensive treatment
plan. The high prevalence of this disorder provides
an opportunity for nurses and health care providers
to develop plans of management that incorporate a
holistic approach reflecting the multilayered needs
of each woman.
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Joan Crete DNP, MSN, WHNP-BC is a women's health nurse
practitioner who practices in the Women's Health Center at St.
Luke's Hospital and Health Network in Bethlehem, Pa. She also
holds a joint appointment with DeSales University in Allentown,
Pa and teaches in the graduate nursing department.
Pamela Adamshick, PhD, RN, PMHCNS-BC is Assistant
Professor of Nursing at St. Luke’s School of Nursing at
Moravian College. Her area of clinical practice is psychiatric/
mental health nursing. Areas of focus as a nurse educator have
included psych/mental health, nursing research, leadership, and
aggression and bullying in adolescents.