2022 IAPMD's PMDD Strategic Plan

2022
A NEW LIGHT ON
PMDD RESEARCH
A STRATEGIC PLAN TO ADVANCE
PATIENT-CENTERED PMDD RESEARCH
This report has been prepared by the International Association for Premenstrual Disorders PMDD Community Coalition to help guide PMDD
research in a patient-centered manner to achieve greater impact and improved patient outcomes.
This version was produced 2022.

SPECIAL THANKS
The development of this Strategic Plan was funded through a Patient-
Centered Outcomes Research Institute® (PCORI ®) Eugene Washington
PCORI Engagement Award (EAIN 20240).
This plan provides an assessment of the current state of knowledge related to
PMDD, previous and current research, and future directions for expanding the
research, knowledge, and approaches that could address the gaps in PMDD
research and treatment. This analysis is the compilation of insights from the
International Association for Premenstrual Disorders PCORI Project Team,
Professional Perspectives Panel, Patient Insight Panel, and IAPMD's PMDD
Community Coalition (PCC).
A special thanks to the primary authors of this plan: Amanda L. Myers, MPH;
Brett Buchert; Tory Eisenlohr-Moul, PhD; Sheila H. Buchert; Liisa Hantsoo, PhD;
Sandi MacDonald; Laura Murphy
Strategic Plan to Advance Patient-Centered PMDD Research

Contents
1 About IAPMD
2 A Message from the PMDD Community Coalition
3 Executive Summary
6 Report Contents & Methodology
7 Overview - PMDD: Have We Done Enough or Are We Just Starting?
10 Life Impact
10 Society, Sexism, Stigma
12 Limitations of the Current Research Workforce
13 Research Challenges
13 Research Opportunities
15 Living with PMDD
15 The PMDD Patient Journey
16 Patient Insights & Experiences
18 Impact on Partners
20 Provider Perspectives
21 A Roadmap for Patient-Centered PMDD Research
21 Research Priorities
22 Biological Mechanisms
24 Early Detection & Screening
26 Pharmacological Treatments
28 Provider Education
30 Psychotherapy
31 Complimentary Treatments
35 Longitudinal Studies
36 From Vision to Action
37 Closing Thoughts
38 IAPMD's Patient Insight Panel
39 PMDD Community Coalition Members
42 Glossary / Abbreviations
43 References / Citations
Strategic Plan to Advance Patient-Centered PMDD Research

ABOUT IAPMD
The International Association for Premenstrual Disorders (IAPMD) is the leading patient-led health
organization focused on premenstrual disorders (PMDs), aspiring to create a world where people with
About IAPMD
Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME) can survive and thrive.
Our mission is to inspire hope and end suffering in those affected by PMDs through peer support,
education, research, and advocacy. What began as a collective of fellow sufferers, has grown into a
global movement accelerating the progress being made around the world on premenstrual disorders and
PMDD in particular.
Before IAPMD’s founding in 2013, there was virtually no support, resources, or information for
women/AFAB with premenstrual symptoms. Now, tens of thousands of people with PMDD support
each other through IAPMD and turn to the organization for life-changing resources. Since that
time, we’ve helped over a million people from more than 100 countries find answers, community, and
hope.
IAPMD is creating a world where people with
Premenstrual Disorders can survive...and thrive.
Learn more about IAPMD at iapmd.org
At IAPMD we create connections – connections that help increase

awareness and understanding of premenstrual disorders around the world. By
bringing people, resources, expertise, and perspectives together, such as through the
PMDD Community Coalition Roundtable, we believe we can achieve greater impact

and improved outcomes for those affected by PMDs.
Strategic Plan to Advance Patient-Centered PMDD Research - 1

A MESSAGE FROM THE PMDD COMMUNITY COALITION (PCC)
The PMDD Patient-Centered Outcomes Research (PCOR) Strategic Plan was created to shine a new light
on PMDD research through the lens of the patient experience. This plan outlines the many “lightbulb
moments” of insight that emerged over the past year through discussions surrounding the 2021 PMDD
Community Coalition Roundtable. It reflects what we heard from those with lived experience of PMDD, and
those who love and care for them.
The reality is that many individuals with PMDD, even properly diagnosed and treated, still face poor
outcomes or choose life-altering surgery or even suicide. We don’t have enough research - or the right
research - to address this problem. This plan helps shine a light on a condition that has been in the
darkness for too long and sets forth priorities for research going forward.
In order to help increase awareness and understanding of PMDD, as well as lead to improved patient
outcomes, this strategic plan proposes a patient-centered approach to research. This approach should be
collaborative, coordinated, and accessible - focusing specifically on the patient. Such an approach
requires true partnerships between patients, scientists, and healthcare providers. It also must be supported
by a system where the social and emotional well-being of every patient is at the center of decision-
making. Through this system, patients, as well as their support systems, have input in the shaping and
delivery of their care and support.
The PMDD PCOR Strategic Plan calls for research that moves toward a world where every person affected
by PMDD is supported by a system that invests in early detection and intervention. This system addresses
social and emotional well-being as a whole, with services that are personalized and designed to meet the
needs of each patient.
We aspire to address PMDD from all angles, not just in treating the condition. We understand that
while PMDD has a clear basis in biology as a disease, the burden of disease on patients is due to the
complex influences of many factors.
Sandi MacDonald, Co-Founder & Sheila H. Buchert, President,
Executive Director, IAPMD Board of Directors, IAPMD
PCC Executive PCC Team Lead

EXECUTIVE SUMMARY
This report was prepared with funding and support from the Patient-Centered
Outcomes Research Institute (PCORI) Eugene Washington Engagement Award
(EAIN 20240).
Premenstrual Dysphoric Disorder (PMDD) is a women’s health and mental health disorder that
affects approximately 5-10% of women and individuals assigned female at birth (AFAB) around
the world (Epperson et al., 2012; Rapkin & Lewis, 2013; Ogebe et al., 2011; Qiao et al., 2012; Osman et
al., 2017). However, this range is simply an estimate due to the difficult nature of confirming PMDD
diagnoses and a lack of a definitive diagnostic test for PMDD (Eisenlohr-Moul et al., 2017). PMDD is
characterized by cyclical psychiatric and physical symptoms that occur in the two weeks prior to the
onset of menses each month (Steiner et al., 2006). The symptoms of PMDD are debilitating and have a
disruptive impact on quality of life, interpersonal relationships, parenthood, and an individual’s
capacity to sustain employment (Halbreich et al., 2003; Rapkin & Winer, 2009; Nash & Chrisler, 1997;
Pearlstein & Steiner, 2012).
PMDD is characterized by cyclical psychiatric and physical
symptoms that occur in the two weeks prior to the onset of
menses each month
State of the Research

In 2013, PMDD was added to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-
5; American Psychiatric Association) as a mood disorder. In 2019, PMDD was also included in the
newest edition of the World Health Organization's International Classification of Diseases (11th ed.;
ICD-11), cross-listed as a disease of the genitourinary system and a depressive disorder. These
diagnostic classifications allowed more patients to receive an accurate diagnosis and standardized

diagnostic criteria for PMDD for use in research studies. Consequently, in the past decade, PMDD has
begun to be identified separately from other premenstrual disorders including Premenstrual Syndrome
(PMS) and Premenstrual Exacerbation (PME) in published research.
A recent review of the literature has shown an uptick in PMS/PMDD research publications over
the past decade (Gao et al., 2021). Among the top countries contributing to the research are the
United States, England, and Sweden. However, there is much more research to be conducted to bring
knowledge of, and normalize, PMDD to the point of other health disorders related to reproductive
function (e.g., postpartum depression [PPD]). In this report, we propose that future research should
take a community-engaged and patient-centered approach to ensure research aims and outcomes are
meaningful and beneficial to patients.
By studying the efficacy of a variety of treatments for PMDD treatment and symptom
reduction (ranging from natural/holistic or minimally invasive options to
pharmacologic/synthetic and more invasive options), PMDD can begin to move from a
disease-centered condition to a patient-centered whole-person care model.
This report will break down seven main topics related to PMDD research discussed at the 2021 PMDD
Community Coalition Roundtable in July 2021.
Patient and Provider Research Priorities

During the Roundtable, patients, providers, and researchers identified what they viewed as the most
crucial research priorities related to PMDD and seven main areas of research. Research areas included:
1. BIOLOGICAL MECHANISMS OF PMDD
2. EARLY DETECTION/ SCREENING
3. PHARMACOLOGICAL TREATMENTS
4. PSYCHOTHERAPY
5. PROVIDER EDUCATION
6. COMPLEMENTARY TREATMENTS
7. LONGITUDINAL STUDIES

Patients were most interested in learning more about the biological mechanisms behind
what causes PMDD, medication/treatment options tailored specifically to PMDD (with a
concern that many existing treatments may be simply “masking” symptoms without
addressing the underlying causes), and the development of a treatment roadmap to
facilitate clinical decision-making based on patients’ individual biology and biomarkers
(e.g., genetic testing). Additionally, patients yearned for an increase in provider
education and more natural, complementary treatment options for PMDD.
Providers and researchers were also interested in increasing the community of providers
and researchers who are knowledgeable about PMDD.
Patients and providers viewed early detection and screening for PMDD (e.g., through the
development of a blood or saliva-based test) as a priority as it would decrease the time
between diagnosis and treatment, and may help patients achieve better health
outcomes.
Increased training opportunities and funding for PMDD research is crucial to expanding the
knowledge and practices related to PMDD biology and treatment.
For an overview of trends in PMDD research up to
2018, review this presentation: "Hotspots & Frontiers:
Trends in Research Related to PMS and PMDD from
1945 to 2018" by Katja M. Schmalenberger, PhD,
Heidelberg University Hospital, Germany.
View I Read paper

REPORT CONTENT & METHODOLOGY
The following report is based on patient-centered priorities in research and care related to PMDD
and all research should remain patient-centered and community-engaged to promote patient
engagement and equity in PMDD research.
This plan provides an assessment of thecurrent state of knowledge related to PMDD, previous and
current research, and future directions for expanding the research, knowledge, and approaches
that could address the gaps in PMDD research and treatment. This analysis is the compilation of
insights from the PCORI project team, Professional Perspectives Panel, Patient Insight Panel, and IAPMD's
PDDD Community Coalition (PCC).
The project team conducted a selective literature review to assess the current state of the scientific
literature and knowledge related to PMDD. Patient and care provider insight panels were formed to
inform this work. The patient panel participated in short surveys, focus groups, and the 2021 PMDD
Roundtable event to provide insight into patient priorities in the future of PMDD research. The provider
panel participated in a care provider survey and the 2021 PMDD Roundtable event to discuss the provider
insight into barriers for PMDD care and conducting PMDD research.
In July 2021, a virtual PMDD Roundtable event was held by IAPMD. The Roundtable brought together
39 patients, providers, and researchers, and other stakeholders to come together and discuss patient
priorities in PMDD research, how patients can comfortably participate in research, provider priorities
for research, current barriers, and brainstorming how those barriers can be overcome.
Patients and providers were
located internationally with
participants from the United
States, India, Germany,
Canada, the United Kingdom,
Australia, and Russia.

OVERVIEW
PMDD: HAVE WE DONE ENOUGH OR ARE WE JUST STARTING?
Premenstrual Dysphoric Disorder (PMDD) is a chronic neuroendocrine condition

and emerging women’s health and mental health issue. Thought to be an
abnormal reaction in the brain to normal monthly hormone fluctuations, PMDD causes
debilitating emotional, mental, and physical symptoms in the premenstrual phase of the
menstrual cycle for 5-10% of women and AFAB individuals of reproductive age
(Hantsoo & Epperson, 2015). Symptoms can include depression, anxiety, mood swings,
irritability, and suicidal thoughts, among others, as well as physical symptoms such as
breast tenderness and bloating (American Psychiatric Association, 2013).
These symptoms often impair daily functioning at work, school, and in

relationships and diminish an individual’s quality of life, leading to a high incidence of
suicide (Osborn et al., 2020). In a recent community-led global survey including 599
people diagnosed with PMDD (based on daily symptom ratings), 86% of individuals
with PMDD reported lifetime thoughts of suicide, and 34% reported a lifetime
suicide attempt (Eisenlohr-Moul et al., 2020). Importantly, these analyses
demonstrated that suicidal ideation and behavior were not better accounted for by
other, frequently co-occurring mental health diagnoses such as major depression or
PMDD itself appears to be a strong

post-traumatic stress disorder. Put another way,
risk factor for suicidal thoughts and behaviors.
There is no single experience of PMDD. PMDD symptoms can be triggered at any
time during the reproductive life cycle - from menarche to perimenopause. While some
people find that PMDD starts from their first period, for others it can, and does, begin
at a different stage in their reproductive lifetime. We do not have a definitive answer
yet as to why this happens or what the initial ‘trigger’ is to PMDD developing/starting,
although it is thought that stress and other changes may alter the way the brain
processes hormone signals. Symptoms can also worsen and change over time
and/or around reproductive events such as pregnancy, birth, miscarriage, and
perimenopause. Again, the reason for this is not fully understood yet. PMDD
cycling does go away after menopause when hormone cycling stops; however, those
with PMDD may still have a sensitivity to hormone fluctuations - and therefore may still
experience PMDD-like symptoms when starting (or changing dosage) of HRT.

Despite the severity and prevalence of PMDD, until recently, there was no official
diagnosis for PMDD or consensus on a definition, diagnostic procedure, or
standards for evidence-based treatment. Patients often had to fight to receive a
diagnosis due to limited awareness in the medical community. IAPMD’s recent study of
599 patients with premenstrual disorders in 2018 suggested that patients wait for an
average 12 years from symptom onset to receive a diagnosis, seeing an

of
average of 6 different doctors in that span (preliminary findings). Most patients are
misdiagnosed with other conditions like depression, anxiety, bipolar disorder, and
borderline personality disorder and often mistreated, or dismissed as having “normal
PMS.” Mental health and menstrual health stigma, along with a lack of awareness,
silenced these women and AFAB individuals from speaking out about their experiences
with severe premenstrual symptoms and kept them from getting help.
PMDD differs from related disorders, including Premenstrual Exacerbation (PME)

and Premenstrual Syndrome (PMS), based on the severity and cyclical “on-off”
pattern of symptoms, with severe symptoms occurring during the two weeks
prior to menses. PMS is defined by recurrent mild-to-moderate psychological and
physical symptoms such as irritability, anxiety, mood swings, changes in libido and
appetite, bloating, abdominal cramps, breast tenderness, fatigue, nausea, and
headaches, which are typically more manageable than PMDD symptoms (Biggs &
Demuth, 2011). PME differs from PMDD as it is the exacerbation of other existing
conditions/underlying physical and psychological disorders (i.e., asthma, epilepsy,
migraines, depression, anxiety, and bipolar disorder) across the menstrual cycle
(Eisenlohr-Moul, 2019). PME and PMDD can be difficult to distinguish; however, they
can most notably be distinguished by the time in which symptoms occur during the
menstrual cycle. PME symptoms are likely to occur throughout the cycle and worsen in
the premenstrual phase.
Diagnostic classifications for PMDD have standardized diagnostic criteria for

PMDD for use in research studies and allowed more patients to receive an
accurate diagnosis, a critical step toward finding effective treatment. In 2013,
PMDD was added to the Diagnostic and Statistical Manual of Mental Disorders (5th
ed.; DSM-5; American Psychiatric Association; American Psychiatric Association, 2013)
as a mood disorder. In 2019, PMDD was also included in the newest edition of the
World Health Organization's International Classification of Diseases (11th ed.; ICD-11;
Reed et al., 2019), cross-listed as a disease of the genitourinary system and a
depressive disorder.

The first recommended medical treatment options for PMDD are selective
serotonin reuptake inhibitors (SSRIs), which improve or eliminate symptoms for
about 60% of patients (Halbriech, 2008). However, SSRIs don’t work for 40% of
patients, and it is common for patients to try multiple SSRIs before finding one that
reduces symptoms without extreme side effects. Oral contraceptive pills, in particular
those containing the progestin drospirenone (DCOCs), administered on an extended-
cycle regimen (extending hormone administration to create a short pill-free interval) are
another first-line treatment for PMDD, which work by suppressing ovulation and the
monthly hormone fluctuations that follow. Oral contraceptive pills are effective for many
but can also worsen mood symptoms for some patients, likely due to sensitivity to the
artificial progestins in these pills, which is common in PMDD patients (Rapkin et al., 2019).
Many PMDD patients do not find relief from these first-line treatment options and
move on to more intrusive and drastic options that suppress the menstrual cycle
through chemical or surgical menopause - meaning some have to choose between
their quality of life and fertility. The imperfection and unpredictability of the available
treatment options highlight a need for further research toward more targeted
treatment approaches and patient insights into the care that they wish to receive.
"PMDD: Have We Done

To learn more view
Enough or Are We Just Starting?" a video

presentation by Amanda Myers, DPSC,
Senior Research Coordinator for Digital Peer
Support, Research Associate, Brandeis
University, Heller School; IAPMD PMDD
Roundtable Project Team
View

LIFE IMPACT
Research shows PMDD causes impairments in social relationships and work activities, similar to
those of major depressive disorder (MDD) (Halbreich et al., 2003). Impairments such as physical
symptoms, impulsivity, low self-esteem, isolation, and difficulties with emotional regulation, may lead to
difficulties in maintaining interpersonal relationships with family, friends, and romantic partners (Nash &
Chrisler, 1997; Halbreich et al., 2003). Published scientific literature revealed that the physical and
behavioral symptoms of PMDD had the potential to affect quality of life, in terms of health, to the point
of disability (Halbreich et al., 2003). Both the physical and psychiatric symptoms of PMDD have been
reported to be debilitating, causing women to miss out on days of work and school. This, in
combination with the cost of seeking treatment and care from multiple providers, contributes to the
financial burden experienced by individuals with PMDD.
Based on the Global Burden of Disease (GBD), it
is estimated that women with PMDD experience
a total of 1,400 days or 3.835 years of Disability
Adjusted Life Years (DALYs) lost due to the
disorder (Halbreich et al., 2003).
SOCIETY, SEXISM, STIGMA

Many patients face societal sexism and stigma related to their condition (Daw, 2002; Pilver et al.,
2011; Pearlstein 1998). Additionally, racial discrimination, homophobia and transphobia are
factors that may influence receiving a diagnosis of PMDD. PMDD was previously described to be
“culturally-bound” by a few scholars who felt that the disorder was unique to individuals in the United
States; however, cases of PMDD have now been observed in AFAB individuals worldwide (e.g., United
States, India, Germany, Iceland, Korea) (Pilver, 2010; Individuals who are
Rapkin & Lewis, 2013).
transgender or non-binary may experience additional distress and dysphoria with their PMDD as
menstruation is culturally-associated with womanhood and femininity and most support is marketed
towards those identified as women.

There are some differences of opinion among both patients and professionals when it comes to the
proper way to categorize PMDD as a medical disorder, with some referring to PMDD as a gynecologic or
endocrine disorder, and others referring to it as a mental or brain-based disorder. Some professionals
and patients express concern with the labeling of PMDD as a mental or brain-based disorder since
mental or brain-based conditions sadly remain highly stigmatized in popular culture. These individuals
point out that labeling this condition as a mental disorder may increase a patient's exposure to dismissal
and mistreatment in both medical and social settings. This may also perpetuate the cultural stereotypes
around PMS and stigmatize patients, rather than address the biological cause of their anguish, which
these individuals sometimes believe to be a hormone imbalance (Daw, 2002).
On the other hand, the majority of the research into the causes of and treatments for PMDD has been
carried out by the fields of neuroscience and psychiatry. Therefore, many professionals in these fields,
along with some patients, have expressed approval of labeling the condition as a mental disorder. These
individuals generally point to the lack of evidence for hormonal or gynecologic abnormalities in PMDD,
as well as noting that the modern disciplines of neuroscience, psychiatry, and psychology all understand
the brain as a biological entity that is susceptible to illness and injury just like any other part of the body.
This latter group, who generally conceptualize PMDD as a brain-based hormone sensitivity disorder,
oftencalls for societal de-stigmatization and equal compassion for all medical conditions
regardless of the body part affected (e.g., ovaries vs. brain).
IAPMD has called for synthesis and cooperation between the two perspectives of
PMDD - as a gynecologic or endocrine disorder -or- as a mental or brain-based disorder
- as both provide important insights and possible solutions.

LIMITATIONS OF THE CURRENT RESEARCH WORKFORCE
Given the recent emergence of the PMDD diagnosis, there remain only a handful of
active scientific laboratories around the world with experience in carrying out
clinical trials and other intensive biological studies of patients with (prospectively
diagnosed) PMDD. This low number of active laboratories limits the number of
scientific studies, research grant proposals, and clinical trials of new treatments that
can be carried out. The pace of scientific progress in PMDD remains slow.
Importantly, without intervention, the number of scientific laboratories focused in this
area is likely to remain low, since there are a limited number of highly resourced
(intellectually and financially) scientific training contexts available for emerging
scientists to develop PMDD-specific expertise and skills.
Funders should prioritize support aimed at galvanizing the PMDD scientific

community. Specifically, if the number of active laboratories in this area is to grow
rather than shrink over the next 20 years, funders may need to support specialized
training contexts in PMDD research in order to grow the next generation of

scientists who can meaningfully contribute to our understanding of the biology and
treatment of this complex disorder, as well as fund PMDD research in general. For
example, the number of new laboratories studying PMDD over the next generation
could be increased by providing targeted funding for scientific training
programs/fellowships designed to foster new experts poised to study the biology of
reproductive mood disorders like PMDD (e.g., T32-MH-093315, “Postdoctoral Training
In addition, specialized
in the Pathophysiology of Reproductive Mood Disorders”).
funding opportunities aimed at increasing funding for research specifically

focused on the biology of female mental health (e.g., RFA-MH-21-105, “Mood and
Psychosis Symptoms During the Menopause Transition”) may also drive forward
work in this area and encourage emerging scientists to seek a career focused
on PMDD. These approaches may be critical for increasing scientific awareness of
these conditions as well as for increasing the overall volume of high-quality scientific
studies in this area.
“Those of us aware of our disorder will continue to look at the research and new findings.
I’m sure I’m not the only one who wishes for a cure so no other person ever feels the pull of
suicide being the answer to stopping the madness. The fact that so many attempt to take
their life to stop feeling this way is unacceptable, but understandable. We’ve been sitting
with this for far too long and we have to find a solution. Another person should not die by
their own hand from this disorder. "
PMDD Patient Insight Panelist

RESEARCH CHALLENGES
PMDD demands more research to investigate novel treatments, yet methodological challenges,
time and financial constraints, and insufficient researcher training limit such research. In addition,
historically high placebo responses in PMDD treatment research (which can be mitigated with rigorous
study design) has discouraged industry-funded drug trials specifically.
PMDD research requires careful study design, time to confirm diagnoses through two months of
prospective daily ratings (Eisenlohr-Moul et al., 2017), and time to monitor symptom change over
several cycles. Without attention to study design and the time and funding to sustain a lengthy study,
researchers risk the usefulness of their studies and the validity and reliability of results. As noted above,
there also aren’t sufficient training or mentorship opportunities available to adequately prepare
young scientists for effective PMDD outcomes research. Few researchers choose to pursue PMDD
research because of these challenges, perpetuating the lack of research.
These factors compound the burden of disease on patients, yet also illuminate the
potential for change with the power to significantly improve patients’ lives.
RESEARCH OPPORTUNITIES
Many research gaps still exist in the world of PMDD. Further research should be conducted to gain
knowledge of the patient’s perspective with their PMDD experience, treatment preferences, and goals.
Involving the patient and their preferences in PMDD treatment may improve outcomes and reduce days of
life lost due to the impairment from this disorder. Examining the impact of PMDD on work and interpersonal
relationships to create widespread understanding, reduce stigma, and implement disability
accommodations in schools and workplaces may also help to create and inform future disability policy.
Collaboration is key: Involving the patient and their preferences
in PMDD treatment may improve outcomes and reduce days of
life lost due to the impairment from this disorder.

Future research should take a community-engaged and patient-centered approach to ensure
research aims and outcomes are meaningful and beneficial to patients. Research should examine
the efficacy of natural, holistic, and minimally invasive options for PMDD treatment and symptom
reduction in order to move PMDD from a disease-centered condition to a patient-centered whole-
person care model. Additionally, it is important to examine the impact of both collaborative care models
and early detection and intervention for PMDD. Further research on the biological mechanisms of PMDD
should take a longitudinal study approach to gain a deeper understanding of hormonal changes across
the lifecycle, as well as examine differences in gene expression in subpopulations, PMDD in diverse
populations, and individual factors that have the potential to impact an individual’s PMDD journey (i.e.,
sexual orientation, age, culture, health literacy). Additionally, research should be directed toward PMDD
and comorbidities such as ADHD and eating disorders to understand the biology underlying both and
tailor individual treatment plans.
PMDD patients need tools to make informed decisions regarding their care and mitigate the
“trial and error” experience in PMDD treatment. The development of behavioral health interventions
specific to PMDD and a decision support tool for patients and providers to jointly determine which
treatment methods would be most beneficial for the individual would go a long way toward addressing
these issues.
With PMDD awareness gaining traction in the fields of women’s health and mental health, an
exciting opportunity exists to take a fresh look at this life-altering disorder. Because so much is
yet unknown about PMDD, there is a tremendous opportunity to start from the ground up and look at this
disorder with new light and curiosity.
Researchers faced with the challenge of developing novel and
innovative measures can seize this time to move toward
groundbreaking discoveries that can dramatically improve the lives
of those living with PMDD.

LIVING WITH PMDD
PMDD is a life-altering experience for millions of women/AFAB individuals around the world.
Throughout 2021, the IAPMD undertook research to better understand the lived experience of those
affected by Premenstrual Dysphoric Disorder (PMDD), surveying patients, care partners, and care
providers.
THE PMDD PATIENT LIFE JOURNEY

MENARCHE / ADOLESCENCE
PMDD can be present from the first period (but can also develop later in the reproductive lifetime).
Studies show that adolescents have PMDD at rates similar to that of adults.
Those with PMDD are at increased risk for suicide and suicidal behavior. Many people with PMDD, though not all, have a
history of sexual trauma or depression.
MID LIFE CYCLE

Misdiagnosis is common - with an accurate diagnosis taking, on average, 12 years. Leaving many struggling alone through
20s these difficult years.
Studies have found that those with PMDD have a higher risk of postpartum depression. These studies found that those with
PMS or PMDD are about 2-3 times more likely to experience postpartum depressive symptoms than those who do not
have PMS/PMDD.
PMDD tends to worsen with age and stress, which are both associated with having children.
It is difficult to know whether the biological process of pregnancy/having children would worsen any symptoms or if it is the
30s
extra stressors/lack of sleep/change in lifestyle that would cause this or a combination of both! This is an area that requires
further research.
PERIMENOPAUSE
During the years before and during the menopause transition (perimenopause), symptoms canget worse for a while since those
40s with PMDD are sensitive to hormone changes, and hormone flux increases EVEN MORE during perimenopause.
Some individuals develop de novo PMDD during perimenopause that was not present earlier in their lives.
Estrogen and progesterone production becomes very erratic and unstable before it declines at menopause.
POST-MENOPAUSE
50+ PMDD cycling goes away after full menopause. However, those with PMDD have a sensitivity to hormone fluctuations - so
may still experience PMDD-like symptoms when starting (or changing dosage) of Hormone Replacement Therapy (HRT).
CHEMICAL & SURGICAL MENOPAUSE

Any
Some patients enter a temporary (chemical) menopause or surgical menopause as part of their PMDD treatment plan.
age
Surgery (bilateral oophorectomy) is the last line in treatment for those who have not gained relief through other currently
available options.
There is no one experience with PMDD. While some people find that PMDD occurs from their first period, for others it can, and
does, begin at a different stage in their reproductive lifetime. We do not have a definitive answer yet as to why this happens
or what the initial ‘trigger’ is to PMDD developing/starting, although it is thought that stress may contribute.
Women/AFAB individuals with PMDD often report higher levels of stress, including perceived and work stress.
As women and AFAB individuals today have an estimated 450 periods during their lifetime, PMDD is a long-term diagnosis.
Symptoms can also worsen and change over time and/or around reproductive events such as pregnancy, birth, miscarriage,
and perimenopause. Again, the reason for this is not yet fully understood.

PATIENT INSIGHTS & EXPERIENCES
The insights presented here are from a series of patient surveys distributed by IAPMD in 2021
PMDD affects patients in all areas of life, including their relationships and work.
Patients were surveyed through a 21-member Patient Insight Panel (PIP), completing
various surveys and participating in focus groups to share their experiences. Survey
results showed that patients had varied experiences in receiving care and treatment and
many offered suggestions for how to improve care, as well as recommendations for
future research.
Suicidal ideation was noted by many as a primary symptom and one of the most
impactful, though this symptom is not explicitly mentioned in the DSM. Patients
spoke about the symptoms they experienced which mirrored many of the symptoms
included in the DSM-5, with some additional symptoms. Other novel symptoms included
a desire to run away or escape, changes in eyesight, severe leg pain, misophonia, and
general hypersensitivity to the environment.
PMDD has a significant impact on relationships. Many felt that their friends and
family didn’t understand what they go through each month, and while most had a
supportive partner, PMDD put a significant strain on this relationship as their partner
often had to take on a caregiver role. Romantic partners were often the patient's
main source of support. Patients also found online support groups very supportive and
helpful, particularly when first finding out about PMDD. Patients did note, however, that
they received less support and understanding from friends and family for PMDD than
they did for other more visible illnesses.
PMDD also impacts patients’ work and careers. This includes difficulty working on
symptomatic days and experiencing stigma and lack of understanding from their
employers. Many patients reported having to take time off from work or quit their jobs,
some feeling they were ‘forced out’ because of their PMDD.
Positive experiences centered primarily on positive relationships with
their care provider, rather than treatment outcomes, particularly when
they felt listened to, when their experiences and hardships were
validated, and when providers were honest about their expertise and
respected the patient’s autonomy and decision-making.

Patients had both positive and negative experiences when it came to receiving
care and treatment for PMDD. Positive experiences centered primarily on positive
relationships with their care provider, rather than treatment outcomes, particularly
when they felt listened to, when their experiences and hardships were validated, and
when providers were honest about their expertise and respected the patient’s
autonomy and decision-making.
Some of the negative experiences patients shared were being gaslighted,

dismissed, or accused of exaggerating by their providers, misdiagnosis, and
being bounced back and forth between specialists. No patient surveyed had
received collaborative care for PMDD (e.g., a therapist and gynecologist coordinating
treatment). Patients felt that many of their providers lacked education and awareness
of PMDD and that they often had to be their own researchers, advocates, and drivers of
their treatment paths.
Some patients reported success with various treatments (selective serotonin

reuptake inhibitors (SSRIs), cognitive behavioral therapy (CBT), dialectical
behavior therapy (DBT)), whereas others continued to struggle to find what works
for them, or experienced significant side effects. Treatments that worked well for
one individual often did not work well for others. Some patients called for more
evidence on natural treatment options, as research is lacking.
For patients, research priorities focused primarily on treatment research,

investigating medications, holistic approaches, nutritional interventions, and
treatments specifically targeted to PMDD, as well as research on psychological
trauma as it relates to PMDD and the causes of PMDD. To improve care for PMDD,
patients recommended diagnostic screening protocols, more research, increased
provider education, mandatory menstrual health education for school-aged children
(including PMDD in the curriculum), multidisciplinary care, and improved insurance
coverage for services and treatments related to PMDD.
"PMDD is real. Every month someone with this condition is
actively going through hell.
Like a search for a cure for cancer, there has to be more that
can be done for people living with PMDD.”
- PMDD Patient Insight Panelist

IMPACT ON PARTNERS
Ninety percent of partners surveyed noted that PMDD had
an extreme/considerable effect on the relationship with
their partner with over half of partners noting the impact of
PMDD on the relationship as ‘extreme.’
PMDD not only affects the individual living with the disorder, but has a considerable
impact on their partner’s wellbeing too, affecting stress, relationships, mental
health, mood, and happiness. Care partners of individuals living with PMDD (spouses,
boyfriends, etc.) were surveyed on the effect PMDD has on their relationship with their
partner and their own lives.
Ninety percent of partners surveyed noted that PMDD had an extreme/considerable

effect on the relationship with their partner with over half of partners noting the impact
of PMDD on the relationship as ‘extreme.’ 42% of partners considered ending the
relationship ‘frequently or very frequently’ and 70% reported that they were more likely to
consider ending the relationship during the premenstrual phase. Over 50% of participants
reported that they experienced verbal abuse on a frequent or very frequent basis and 10%
of partners experienced physical abuse frequently or very frequently. However, despite the
overall negative effect of PMDD reported by partners on the relationship, the majority of
participants described the relationship they had with their partner as stronger rather than
weaker.
Almost 50% of partner respondents rated PMDD as having an ‘extreme’ impact on

their mood, mental health, and happiness, with over 90% of participants describing
the impact of PMDD as negative or very negative. Partners reported becoming more
irritable and depressed during their partner’s premenstrual phase and 90% of partners
reported that they were more likely to experience an increase in stress during this time. 86%
of partners felt that PMDD had a negative effect on their long-term mental health. Even
higher percentages of respondents reported a long-term negative effect of PMDD on their
stress and happiness. 51% of partners described the impact of PMDD on their physical
health as extreme or considerable. Partners also reported a negative long-term impact on
their own self-confidence and self-worth and 50% felt PMDD had negatively affected their
occupation.

"Through my wife’s journey with PMDD, I have had the opportunity to
witness the severity of this chronic and debilitating condition over a 15
year period and the direct impact on a sufferer's life. I recognize from
personal experience the impact of PMDD on partners and caregivers
can also be considerable but there is little in the way of support
networks, resources or research."
Aaron, Patient Partner & IAPMD Coalition Member
Age, years with partner, and treatment status affected partner perceptions in several ways.
Those who were 40 years or older reported experiencing verbal abuse more frequently, and were more
likely to report a negative effect on long-term happiness. In addition, older respondents were more likely
to report their partners as being less engaged in treatment for PMDD. Those who were in a relationship
with a PMDD sufferer for 7 or more years were more likely to report a negative effect of PMDD on the
relationship with their partner and immediate family relationships, as well as on their mental health and
stress levels. Partners of sufferers of PMDD who were not undergoing treatment reported verbal abuse
occurring more frequently, as well as a long-term negative effect on their physical health and views
about relationships. Partners who had partners receiving treatment were less likely to frequently
consider ending the relationship and felt PMDD had a less negative effect on their leisure time, hobbies,
and physical health.
“A younger generation of women and their families deserve to stand on the
shoulders of sacred giants armed with effective tools and established
research. The rate of suicide continues to climb, especially among young
people, and I believe that suicidology within the context of PMDD/PME might
offer transformative insight into prevention of suicide and reduction of harm
around suicidal behavior."

PROVIDER PERSPECTIVES
Twenty-three (23) care providers participated in a qualitative survey to share their thoughts and
insights regarding the current state of care for PMDD and ideas for improvement. Providers cited
several barriers to providing quality care for PMDD, as well as suggestions for how to address these
barriers.
Barriers to care included lack of awareness, education, research, and time, as well as
difficulties with patients, and stigma. Providers felt that the overall lack of awareness and
understanding about PMDD in the professional community limited their ability to collaborate, network,
and gain support from peers, as well as provide multidisciplinary care for PMDD. Providers felt this lack
of awareness was in large part due to the lack of education and training on PMDD available to
providers, and limited research. Some providers found difficulties with their patients were a barrier to
care - which included patients in perimenopause and patients living with multiple conditions or
underlying mental health conditions, as well as some patient’s seeming unwillingness to work towards
change. Stigma against mental and hormonal health also inhibited quality care, as well as providers
lacking time and appropriate compensation for their time working with PMDD patients.
Care provider recommendations for improving care for PMDD patients centered on improving
provider education, increasing research on PMDD, and the development of a professional peer
network. Providers suggested that a required curriculum on PMDD be created for providers-in-training
at various levels of formal education (undergraduate health-related programs, graduate/medical
school, and residency/specialty training programs), as well as accredited continuing education for
PMDD, and the development of official guidelines for PMDD care and treatment put forth by prominent
US/international societies. As for research, providers called for research to investigate biomarkers
underlying PMDD, medications, psychotherapy (including the development of a psychotherapy
treatment manual for PMDD), nutritional interventions, placebo response in PMDD, and long-term
outcomes of treatments. Finally, providers recommended the development of a professional peer
network for PMDD providers to enable multidisciplinary care and better support providers.
PMDD affects patients’ lives in considerable ways, and also

affects their partners’ lives. To improve care and outcomes for
individuals living with PMDD, improvements should focus on
addressing the priorities of patients, as well as supporting
partners, and ensuring care providers are well-equipped with
training and research to address their patient’s needs.

A ROADMAP FOR PATIENT-CENTERED PMDD RESEARCH
The IAPMD utilized a Eugene Washington PCORI Engagement Award to build a PMDD Community
Coalition and host a first-ever PMDD Roundtable event to develop the areas of focus for this
Roadmap. Internal and external stakeholders from the patient and professional communities were
engaged and existing research and IAPMD’s own research portfolio were examined to identify gaps
and critical PMDD research issues that need to be addressed. A list of research priorities and questions
were developed, vetted, and prioritized by key stakeholders who comprised the PMDD Community
Coalition.
The following seven areas were identified as topics related to PMDD deemed as research priorities:
1) BIOLOGICAL MECHANISMS OF PMDD

Work toward the development of biomarkers that can be used to diagnose PMDD and eventually
develop a blood or saliva test.
2) EARLY DETECTION/ SCREENING

Incorporate PMDD screening into primary care, gynecology, psychiatry, psychology, and other clinical
settings.
3) PHARMACOLOGICAL TREATMENTS
Research biological markers as indicators of which medications PMDD patients will have the most
success with.
4) PSYCHOTHERAPY
Examine the efficacy of an individualized psychotherapy approach specific to PMDD.
5) PROVIDER EDUCATION
Develop and require health care provider training in PMDD, especially for residency and internship
training programs in psychiatry, gynecology, and psychology. Integrate patients’ lived experiences into
the curriculum in order to highlight the complexity of the disorder and the need for cross-disciplinary
collaboration.
6) COMPLEMENTARY TREATMENTS
Research and determine the efficacy of complementary treatments utilized by PMDD patients.
7) LONGITUDINAL STUDIES
Study PMDD in a longitudinal manner.
Participants of the 2021 PMDD Roundtable event were divided into breakout sessions over the course of the
two-day event. Together, providers, researchers, and patients discussed what was currently known about each
topic, identified research opportunities and potential barriers in conducting this research, and brainstormed
solutions to facilitate patient engagement and improve outcomes. The following sections include a summary of
the discussions that occurred during these sessions.

BIOLOGICAL MECHANISMS
Develop a blood or saliva test to detect PMDD and better understand biomarkers of PMDD to
form dimensional diagnoses for specific types of hormone sensitivity.
The cause or reason for PMDD is attributed to 5 major contributors:
Genetic susceptibility
Sensitivity to progesterone and allopregnanolone (ALLO; a progesterone metabolite)
Alterations in neurotransmitters (such as serotonin), or brain-derived neurotrophic factor (BDNF)
Structural and functional differences within the brain
Increased trauma, decreased resiliency, and inflammatory markers
However, research suggests that there may be temporal subtypes of PMDD, including occurrences where
patients experience moderate symptoms in the premenstrual week, severe symptoms for two
premenstrual weeks, or severe symptoms in the premenstrual week that are slow to subside (Eisenlohr-
Moul et al., 2020).
biological mechanisms behind PMDD are

Based on the Provider Survey, many providers felt that the
incompletely understood and that presumably there may be more mechanisms involved. They
highlighted the need for research into biomarkers that predict response to specific treatments and
correspond to specific patterns of symptoms or specific hormone sensitivities. Providers recommended
developing a blood test to detect PMDD to better understand biomarkers and form dimensional
diagnoses for specific types of hormone sensitivity. One provider commented that the lack of biomarkers
may be one of the biggest barriers, “...since providers don't have the time or expertise to use daily
ratings to make a diagnosis. This also limits our ability to study it efficiently.” Additionally, further insight
from the Provider Survey how to distinguish PMDD from PME in clinical settings.
centered on
However, it became clear that our efforts might be better placed in understanding what truly
underlies both, rather than what separates them. PMDD and PME are clinical diagnoses made based
on symptoms that present and the timing of symptoms.
“The fact that there remains no clear answer to "What is PMDD?" is a great place to
start. There are theories, for sure, but it would be great for us to be clearer on what is
happening in our brains and/or bodies in response to our regular hormonal fluctuations.
And, given that most "symptoms" are actually signs, we should know what is causing
PMDD, even if it boils down to a genetic defect. Having those answers would go a long
way in further developing policy to support folks dealing with PMDD/PME — not to
mention treatment."
Strategic Plan to Advance Patient-Centered PMDD Research 5

Both PMDD and PME have an underlying biology that isn’t fully illuminated yet. If this underlying biology
were illuminated, it might give us a better understanding of treatments and which will work for which
person/presentation of symptoms.
After participating in the 2021 PMDD Roundtable breakout sessions for biological mechanisms,
patients, researchers, and providers compiled a list of research questions/ priorities related to this
topic. The topics that were deemed most important were:

Rather than treating PMDD/hormone sensitivity as ONE thing with ONE biological cause, study
(and diagnose/treat) different types of cyclical hormone sensitivity

Further research on basic biological processes across the menstrual cycle
How microbiome or dietary changes impact symptoms
Further research on epigenetics, particularly given that hormone sensitivity sometimes increases
over the lifespan, which implies an epigenetic mechanism

Developmental changes in hormone levels or variability and how they relate to PMDD severity
Misophonia (sound sensitivity - a condition commonly reported by PMDD sufferers) and saccadic
eye velocity (changes in visual function)
Research related to how pairs or groups of symptoms change together over the cycle within
people, identify some that seem to covary more than others, and see what they have in common in
terms of biological triggers in the brain
Investigate which symptoms tend to increase or decrease together from month-to-month

What symptoms of PMDD people are googling together - use search analytics to understand which
symptoms co-occur
Conduct time-series studies to understand the existing lag between hormone changes and
symptoms and how this may vary by symptom or between people
Use intensive designs to study different directions of hormone sensitivity (e.g., estrogen surge
one day correlated with depression the next day, vs. progesterone withdrawal on one day
predicting irritability the next, etc.)
Participants of this breakout session discussed barriers in the way PMDD research is currently
conducted that can compromise the validity of scientific findings. These barriers include studying
PMDD using retrospective/ cross-sectional designs. Studies that examine PMDD or hormone sensitivity
at a single time point are troublesome as they do not accommodate for the changes that occur
throughout the menstrual cycle. Additionally, it is difficult to navigate current scientific literature
related to PMDD since research has been published that does not correctly diagnose PMDD/hormone
sensitivity through prospective daily ratings. One proposed solution to this barrier was the
development of structured training opportunities for researchers. It is currently very difficult to
find places to learn about how to study the cycle or PMDD and widespread knowledge of this process
could expand the research capacity for this topic.

EARLY DETECTION & SCREENING
Incorporate PMDD screening into primary care, gynecology, psychiatry, and other clinical
settings and integrate PMDD screening into menstrual tracking apps (i.e., fertility and
period/cycle tracking apps) that can help flag potential symptoms related to the condition.
Patients desire to have PMDD screening integrated into primary care, gynecology, psychiatry, and other
clinical settings. Currently, PMDD cannot be detected through blood, hormone, or genetic testing.
Adolescents who reach puberty are at greater risk for depressive disorders, thus, justifying the need for
early screening of PMDD. Early screening for PMDD provides patients with the opportunity for early
intervention.
Current screening and diagnostic tools for PMDD include:
Premenstrual Symptoms Screening Tool (PSST)
Daily Record of Severity of Problems (DRSP) - daily ratings of DSM-5 symptoms across 2 months
Carolina Premenstrual Assessment Scoring System (C-PASS) as a standardized scoring system
for the DRSP
Mobile applications for tracking daily self-ratings (e.g., Me v PMDD, Prementrics)
63% of surveyed providers who are knowledgeable about PMDD

Based on the care provider survey,
routinely inquired about patients’ premenstrual symptoms, which begs several questions: “Which
disciplines should be screening for PMDD?” and “Which populations are most at risk (teens post-puberty,
postpartum women, perimenopausal women, all women/AFAB)?” PMDD care providers reported using
various methods to diagnose PMDD. These methods included daily symptom and cycle tracking, patient
history, and self-report alone.
When asked how the diagnostic journey could be improved upon, providers answered:
Provider education
Make improvements to symptom/cycle tracking methods
An app that provides data that are printable/shareable with providers
Reduce the burden of symptom tracking to tracking just 1-2 indicative symptoms
Develop a blood test to detect PMDD; understanding biomarkers of PMDD to form
dimensional diagnoses for specific types of hormone sensitivity
Receiving a PMDD diagnosis, particularly an early diagnosis, may help patients achieve better
health outcomes and create opportunities in accessing PMDD care. With provider capacity and
limited appointment durations, providers expressed that it is most helpful when patients bring clear hard
copies of cycle-tracking charts to their appointments. This allows for efficiency and consistency in the
data that the providers are viewing.

When discussing applications for PMDD symptom tracking, patients and providers agreed that PMDD
apps were useful, but only for people who were already familiar with PMDD. The group agreed that
PMDD screening could and should be integrated into other menstrual tracking apps (i.e., fertility
and period/cycle tracking apps) and that these apps could flag potential symptoms related to the
condition.
Who should be responsible for screening patients for PMDD? Providers, patients, and researchers
identified settings that they believed would be optimal for implementing screening for PMDD, some of
which already implement screening for other disorders. Proposed screening settings included:
Primary care settings
Women’s Health and gynecology clinics, including abortion clinics
Postpartum care settings
Psychiatric emergency rooms
Pediatric clinics
Mental health treatment settings
Women’s prisons
University campuses
Participants also emphasized the importance of integrating PMDD screening into these settings, as
different countries have different structures of annual care. For example, it is not routine for women in
the United Kingdom to receive annual gynecological check-ups. Thus, implementing screening into
additional settings provides an opportunity for identifying PMDD cases.
Lastly, in the roundtable discussion related to early detection and screening for PMDD, the topic of
menstrual health literacy and education arose. Patients expressed that there is a lack of health
education related to “normal” menstruation, and they felt that many symptoms of PMDD were
“brushed off” as “normal.” While PMDD is not present for all from an early age and can be triggered
along the reproductive life cycle, education and awareness efforts should extend beyond the traditional
school-based health education curriculum. Beginning conversations on menstrual health at a young age
may also help to normalize discussions of this nature and help to de-stigmatize menstrual health
issues. By educating youth and teens, we can create open dialogue related to symptoms, possibly
identifying “abnormal” symptoms, and seeking treatment sooner.
Patients expressed that there is a lack of health education
related to “normal” menstruation, and they felt that many
symptoms of PMDD were “brushed off” as “normal.”

PHARMACOLOGICAL TREATMENTS
Research biological markers as indicators of which medications PMDD patients will have the
most success with.
Various evidence-based treatment options ranging in effectiveness and invasiveness currently

exist for PMDD. Pharmacological treatments may be effective in reducing PMDD symptoms, especially
during the luteal phase of the menstrual cycle. Current available pharmacological treatment options
for PMDD include:
SSRIs (Selective Serotonin Reuptake Inhibitors), common antidepressants, to target the luteal
phase serotonergic deficiencies found in PMDD
Hormonal contraceptives containing Drospirenone on an extended schedule, and other methods
for suppressing ovulation and hormone flux
GnRH agonists (chemical menopause) with HRT add-back
While there are a variety of pharmacological treatment options, options that are specifically
tailored to PMDD do not exist. The current available treatment options are imperfect and
inconsistent in outcomes amongst patients.
While some medications work for some patients, results are inconsistent among much of the
patient population. Future research should focus on biological markers as indicators of which
medications patients will have the most success with. Some participants raised the possibility of
genetic testing as a method of predicting treatment response. Another suggestion for beginning to
address this research was a widespread “How Stuff Works” patient survey to collect a wide range of
data on patients and their experiences with symptoms, medication, trials, and errors.
Additionally, providers expressed the need for further research into both existing and novel
medications, including:
SSRIs (e.g. what differentiates SSRI responders vs non-responders with PMDD?; what is the
mechanism through which SSRIs work quickly in PMDD?; Full-cycle vs. luteal phase-only vs.
symptom-onset SSRIs)
Oral contraceptive pills (OCPs)
Ulipristal acetate and other similar medications
5-alpha reductase inhibitors
Various oral contraceptives (especially those containing drospirenone and those taken on an
extended schedule)
Sepranolone (isoallopregnanolone) and similar drugs
Hormone-based treatments
Antihistamines
Estrogen and progesterone (to be re-evaluated as treatments for patients with specific symptom
patterns)

Patients expressed frustration in trying medication after medication, which can be a frustrating
process with either little or negative results. Often, patients found medications for PMDD to
have harmful side effects, or the treatments came at the cost of their fertility. There is a need for
finding an in-between where patients do not have to compromise their fertility in exchange for
symptom alleviation. Additionally, patients found themselves having to take multiple medications to
cope with the symptoms of PMDD, but felt that these medications were simply masking the symptoms,
not addressing the underlying cause of PMDD.
Greater understanding of PMDD and patient experiences may lead to more funding
opportunities for researchers to examine pharmacological treatment options for PMDD.
Additionally, the creation of a PMDD treatment pathway and implementing widespread provider
education may help to alleviate the burden on patients of educating their providers and relieve them of
the duties of being their own treatment researchers.
Additional funding for scientific training programs focused on developing

more PMDD-focused scientific experts (and their new laboratories) are
needed, as well as funding for PMDD research in general.
“There are many evidence-based treatments, but I believe — in order
to save lives — we need treatments designed and targeted to the
exact mechanisms of these disorders leaving us with more options
than a) masking symptoms b) suppressing the menstrual cycle or c)
invasive surgeries. And that requires not only psychological and
pharmaceutical research, but a deeper understanding of the
endocrine and neurological aspects of PMDD/PME.”
Taylor, US, PMDD Patient Insight Panelist

PROVIDER EDUCATION
Develop provider training on PMDD for health-related degree programs, mental health
professional education programs, and specialty training programs, that integrate patients’
lived experience into the curriculum for providers to gain further understanding about the real-
life impact of this disorder.
One of the largest barriers to care that was identified was a lack of education for providers
about PMDD. Oftentimes, patients have to guide their treatments as many providers are unfamiliar
with PMDD, and those who have heard of PMDD are not familiar with effective treatment options. The
topic of PMDD is not covered in most health-related degree programs, mental health professional
education programs, or specialty training programs.
Suggested areas for improved provider education include:
Required curriculum for undergraduate and graduate health-related degree programs
Include PMDD in specialty/residency training programs for psychiatry, gynecology, clinical
psychology, etc.
Development of a formal training/certification program for PMDD specialists
Accredited continuing education on PMDD
Official comprehensive management and treatment guidelines from US medical societies (ACOG,
APA, etc.)
Rather than PMDD care being a specialty, it should be a core competency of care, just as
postpartum depression and other women’s health topics are.
Provider training must integrate patients’ lived experience into the curriculum for providers to
gain further understanding about the real-life impact of PMDD. Providers who currently exist
within this specialty should help develop training materials for dissemination throughout professional
and educational settings.
Oftentimes, patients have to guide their treatments as many
providers are unfamiliar with PMDD, and those who have
heard of PMDD are not familiar with effective treatment
options.

For further dissemination and widespread education on PMDD, major social media platforms
should be used to promote community-based education. This also provides the opportunity for
patients and providers to connect across platforms to discuss the impact of this disorder.
Future steps that can be made to increase provider knowledge on this topic include:
Future research and educational efforts should be made to normalize women’s reproductive and
menstruation issues, like PMDD, as was done for postpartum depression.
Medical school and residency curricula can be adjusted to include standardized education on
PMDD diagnostics, effects, impact, and treatment approaches to better equip providers with
recognizing this disorder and taking actionable steps to treat patients.
Standardized education on PMDD should be required for licensed individuals employed in the
mental health field.
Evaluate the effectiveness of a provider education program (either as part of a formal training
curriculum or continuing education) on patient care outcomes.
“I believe there is a huge gap in PMDD awareness, diagnosis, and treatment in the primary
care setting. I know this first-hand from a patient perspective,
as well as from a clinical perspective, working as a nurse in
community health/family medicine. As specialized psychiatric care
becomes less accessible, PCPs manage numerous patients with
mental illnesses, such as anxiety and depression. They also
provide menstrual care to women of childbearing age, which is an
ideal time to have the discussion around menstrual cycles and mood. Had my PCP been
familiar with PMDD, I believe I could have been diagnosed years earlier. Psychiatrists also
need comprehensive training on the diagnosis and treatment of PMDD.
Ali, PMDD Patient Insight Panelist

PSYCHOTHERAPY
Studies uncovering the emotional, cognitive, and behavioral mechanisms of PMDD are needed.
Further, development of an individualized psychotherapy approach specific to PMDD, including a
specific PMDD treatment protocol, viewed as treatment to reduce symptom severity rather than
simply support/crisis management. This treatment should be trauma-informed.
While a range of psychotherapy approaches are currently utilized for PMDD, patients may benefit from a
more targeted approach, specifically treating PMDD with a combination of psychotherapy approaches.
Current psychotherapy approaches for PMDD address cognitive, behavioral, relational, and lifestyle
factors and include:
Psychoeducation about PMDD
Dialectic Behavioral Therapy (DBT)
Cognitive Behavioral Therapy (CBT)
Acceptance and Commitment Therapy (ACT)
Trauma-focused therapies
Couples counseling and the inclusion of partners in specific therapy sessions
Psychotherapy may also be recommended as an adjunct to medical treatment for PMDD to help
individuals cope with medication adjustments, unaddressed symptoms, or underlying trauma.
The development of a psychotherapy treatment manual for PMDD for different types of therapy (DBT,
ACT, etc. - [i.e., DBT for PMDD]) or combining salient factors across multiple therapies into a
comprehensive manual [i.e., Psychotherapy for PMDD] is needed.
Patients have a hesitancy to be completely honest with providers about suicidal thoughts, for
fear of hospitalization. This is especially true for patients who knew when their period started they
would feel well again, but would still remain in the hospital. Those with children reported concerns about
hospitalization and the ramifications of this on how the safety of their children is perceived by others
(including professionals). Therapists should appropriately acknowledge the menstrual cycle in sessions to
reduce the taboo of talking about it, as well as understand the severity of PMDD, normalizing the
experience of suicidal thoughts and supporting safety.
Therapists may benefit from establishing a multidisciplinary care team

(gynecologists, psychiatrists, nutritionists, etc.) they can collaborate with to
support the mind-body well-being of their clients with PMDD.

COMPLEMENTARY TREATMENTS
Research and determine the efficacy of complementary treatments utilized by PMDD patients.
While providers and patients reported the current utilization of a range of holistic/ complementary
treatments for PMDD, both parties agree that further research is necessary to determine the actual
effectiveness of such treatments. Current nonpharmacologic treatment options include therapy (DBT,
CBT, ACT, somatic psychotherapy), mindfulness practices (yoga and meditation), supplements including
Vitamin B6, St. John’s Wort, SAMe, vitex agnus castus/ chaste berry, Vitamin D, Magnesium, and Calcium,
dietary changes, acupuncture, massage (trauma-informed massage, myofascial release), and exercise.
Patients expressed that it was a priority to examine the efficacy of holistic treatment approaches for
PMDD including lifestyle interventions. One focus group participant stated “We want to take care of
ourselves. Could I have a better diet? A natural diet? We don’t always want to be a guinea pig.” Patients
expressed feelings of success with functional nutrition and supplements (e.g., Iron, Magnesium, Vitamin D,
Vitamin B, and Vitex), however, they expressed the need for additional natural treatment approach
options.
A SELECTION OF COMPLEMENTARY TREATMENTS

REPORTED AS TRIALED BY PMDD PATIENTS*
LIFESTYLE CHANGES HERBAL & COMPLIMENTRY THERAPIES
St. John’s Wort SAMe

Dietary changes Seed Cycling
Vitex Agnus Castus/ Chaste Berry Antihistamines
Acupuncture Intermittent Fasting
Prebiotics + probiotics CBD oil
Massage (trauma-informed Atkins Diet
Evening Primrose Oil Kelp
massage, myofascial release) Keto Diet
Traditional Chinese Medicine Ashwagandha
Exercise Cold Water Swimming
Microdosing Mushrooms Maca Powder
Mindfulness Practices (yoga Plant-Based Diet
Essential Oils Acupuncture
and meditation) Regular Masturbation
Cannabis Reflexology
Elimination Diet
Microdosing LSD Sound Baths
Cutting Out Alcohol
NUTRITIONAL SUPPLEMENTS PSYCHOTHERAPYS
Vitamin B6 DBT
Vitamin D CBT
Magnesium ACT
Calcium Somatic Psychotherapy
Iron RTT - Rapid Transformation Therapy (Unregulated)
Zinc Hypnotherapy
Talking Therapy
Strategic Plan to Advance Patient-Centered PMDD Research - 31 * PATIENT INSIGHT PANEL MEMBERS AND THE WIDER PMDD COMMUNITY
Complementary treatments offer a new array of therapeutic tools for managing the symptoms of
PMDD that need to be evaluated for effectiveness. However, there is the absence of regulatory,
statutory, and financial gatekeepers for such treatments, which may present issues related to
cost containment and safety. The structure of research on complementary treatments for PMDD needs a
novel approach with cost, patient safety, and patient-centered research at the forefront.
Patients, researchers, and providers who participated in the 2021 PMDD Roundtable compiled the
following list of priorities to more effectively research complementary treatments:
The need for daily ratings-based diagnosis of PMDD in clinical trials of complementary and
alternative treatments
The need for evidence of quality/ control/ standardization of what goes into a product, with in-depth
data on the effectiveness, safety, potential risks, and interactions with other complementary
treatments or medication
Further investigation of the benefits of natural supplements (pollen extract, red clover flavorings,
cannabinoids (CBD), antihistamines)
Efficacy of yoga practices and mindfulness practices for PMDD and the feasibility of maintaining
complementary treatment practices while struggling with inner motivation due to symptoms (struggling
to even shower, or cook a meal, etc.)
Study on the links between trauma, auto-immune, and PMDD (i.e., inflammatory signaling, cytokines,
and cortisol for inflammation) and how they may be involved with PMDD
Research into tools that can be used to help patients manage physical symptoms of PMDD, in
addition to pharmacological interventions which are helpful for the mental aspects
Research into how complementary therapies can be used to reduce side effects of
pharmacological treatments
Study on how to overcome barriers, including funding/insurance, to help PMDD patients access
complementary treatments if they are deemed appropriate
Understanding of what complementary treatments are most effective and at what points during the
menstrual cycle (treating symptoms each day throughout the 28-day cycle)
Research into how nutrition might influence PMDD. Whether certain diets may help to reduce
symptoms
Research into predicting treatment response, thus reducing the timeline from diagnosis to successful
treatment

Patients expressed that they would be willing to participate in research towards these
complementary medicine priorities. However, the research must remain patient-centered and
empower the patients to make decisions about their own health. Patients were also willing to participate
in research that used a collaborative model of treatments (i.e., combining acupuncture, therapy,
nutrition, massage therapy) to find effective combinations of complementary treatments. Patients
expressed that they believe vast amounts of anecdotal evidence regarding complementary treatment
effectiveness already exists amongst the PMDD community.
A primary barrier to participating in PMDD research is that many studies require patients to
come off of their current medication regimen in order to participate in the research trial. Patients
view this as a huge consequence as they would be risking their well-being to participate in such
research with no guaranteed results. However, patients expressed they’d feel more comfortable
participating in clinical trials for complementary treatments than clinical trials for pharmacological
treatment methods because they believed that these treatments were more “natural” and less likely to be
harmful. [Professional participants encouraged patient safety advisories in this area, noting that
supplements are often unregulated, are not necessarily more “natural” or “healthy” than prescribed
medications, and are often capable of causing harmful side effects just like prescribed medications.]
Researchers expressed their interest and willingness to conduct PMDD research related to
complementary treatments and identified barriers and potential ways to address these barriers.
For generalizable results across the PMDD community, researchers identified the need for larger sample
sizes over the duration of a longitudinal study. One major barrier to conducting this research is that there
is a lack of funding for complementary treatments in PMDD research. Researchers reported that many
available funding sources for developing the evidence needed to seek FDA approval for a new
medication are driven by pharmacological company priorities. Researchers worldwide have found that
there is often a lack of standardized supplement products (dosing, ingredients, etc.) with which to
conduct treatment studies. Research would vary by available products in each country, thus, leading to
less generalizability for PMDD patients as a whole.
One major barrier to conducting this research is that
there is a lack of funding for complementary
treatments in PMDD research.

To begin to address obstacles faced related to complementary treatments and research,
patients, providers, and researchers suggested the following:
Healthcare systems/insurance providers should allow access to complementary therapies the same
way they do for patients with cancer and other chronic illnesses (i.e., insurance coverage for
acupuncture, authorization for nutritionist services).
Complementary treatments should not be seen as a last resort, rather they should be permitted to
be utilized in unison with other therapies.
Researchers should collaborate with complementary treatment providers (i.e., yoga therapists,
massage therapists, acupuncturists, nutritionists) to test the impacts of these treatments when
provided by experts in the area.
Researchers can submit preliminary data to funding sources to bring light to the scale of the
problem and funding needs.
Rather than requiring patients to halt all medication regimens in order to participate in research,
research could examine whether complementary therapies work well with patients who are
currently on certain pharmacological treatments (e.g. “what is the improvement across the board,
based on who is on what pharmacological treatment and taking Magnesium?”)
In-depth research conducted on the topic of complementary treatment options for PMDD has the
potential to positively impact the lives of patients with PMDD. If conducted, we could expect to
see patients experiencing shorter durations between receiving a PMDD diagnosis and finding treatment
options that are successful and effective for them. Additionally, the proven efficacy of complementary
treatments (or combinations thereof) may result in a decreased need for invasive procedures or
pharmacological treatments with severe side effects. If patients do continue with pharmacological
treatments and have success remedying certain PMDD symptoms, complementary treatments may help
them to alleviate the remainder of their symptoms or lessen the side effects that often accompany
pharmacological treatments for PMDD.
Researching complementary treatments and finding effective treatments will

increase the options that PMDD patients encounter when seeking treatments. It
can be presumed that the more treatments that are available for PMDD, the more
likely patients are to find a treatment that works effectively for them and their
unique experiences. All PMDD research should aim to improve the quality of life
for the patients who experience this disorder.

LONGITUDINAL STUDIES
Study PMDD in a longitudinal manner, over a long period of time, to observe and learn about PMDD
patients through all phases of their menstrual cycle, and get a full sense of the impact of PMDD
over the lifespan.
The field of PMDD research could benefit greatly from utilizing a longitudinal study design. Patients
reported being willing to participate in this research and highlighted the importance of providers and
researchers seeing PMDD patients through all phases of their menstrual cycle, not just in the weeks that
they are doing “better” to get a full sense of the impact of PMDD. As PMDD is anecdotally known to
change over the course of the reproductive life cycle (in particular around childbirth and perimenopause),
longitudinal research could illuminate what changes are likely to occur and potentially why.
PMDD related research topics that could benefit from a long-term study design include:
Root causes of PMDD with a focus on biological mechanisms and genetics vs. environmental factors
Factors that worsen/ improve/ trigger PMDD over time (i.e., life events, immunological, stress, lifestyle)
Symptom variation across individuals with PMDD and identifying contributing factors
Genetic variables (i.e., single nucleotide polymorphisms, individual genetic variations) - follow a group
of women to lead to early detection of PMDD and measure who is more likely to develop PMDD
Perimenopause to menopause transition
Funding is a primary barrier to conducting this research. Researchers’ hesitancy to engage with
longitudinal studies largely came from the fact that these studies are expensive and require more
resources. The researchers mentioned that IAPMD could be a useful liaison between funding sources and
researchers to continue to raise attention to the need for funding for longitudinal PMDD research.
“Being told that there is no cure was initially very
demoralizing and allowed me to paint a very stark
picture of what my life will entail dealing with my
symptoms on a cyclical basis."
PMDD Patient - Patient Insight Panelist

FROM VISION TO ACTION
Work addressing the knowledge and research gaps related to PMDD is already underway,
though much further attention is needed to bring light to this disorder. Along with this report,
IAPMD is publishing “A Guide to Effectively Conducting Rigorous, Patient-Centered PMDD Research.”
This guide will set forth best practices and principles for promoting quality patient-centered and
community-engaged research within the PMDD population. Additionally, IAPMD has developed
professional education communities to begin to address the gap in provider education and to
promote networking among researchers. These communities will be a space for education and
discussion, provider webinars, and integrating the patient voice into educational materials. Additionally,
these communities will allow providers to consult with each other on patient cases, treatment options,
and best practices.
How can you get involved? Providers interested in getting involved can join IAPMD’s Professional
Communities. Additionally, researchers, patients, and providers can collaborate on patient-centered
research projects related to the topics discussed in this report. By engaging in this research, you are
bringing attention to this disorder that is in need of attention from funding sources to increase
knowledge, increase treatment options, and improve the lives of patients struggling with PMDD.
iapmd.org/join-professional-community

CLOSING THOUGHTS
This PMDD PCOR Strategic Plan provides an assessment of the current state of knowledge related to
PMDD. It also addresses previous and current research, and future directions for expanding research,
knowledge, and approaches to address the gaps that exist within PMDD research and treatment.
What started as a dream by IAPMD to create a world where all those affected by PMDD would be
supported, has turned into a Strategic Plan for PMDD that proposes a patient-centered approach to
research. This plan helps shine a light on PMDD research through the lens of the patient experience. It is
the beginning of shaping the delivery of care for each patient. Throughout this plan, valid points have
been raised that illustrate the need to address PMDD from all angles; to address physical, social, and
emotional wellbeing. In order to attempt to accomplish this, patients, as well as their support systems,
must have input into the planning, as well as the implementation of their care plan.
All of this can not end here.
Presentations from the
IAPMD PMDD Roundtable
July 2021
Special thanks to the following members of the PMDD Community

Coalition who greatly contributed to making the strategic plan:
Amanda L. Myers, MPH
Brett Buchert
Tory Eisenlohr-Moul, PhD
Liisa Hantsoo, PhD
Sandi MacDonald
Sheila Buchert
Laura Murphy

IAPMD's Patient Insight Panel
IAPMD's Patient Insight Panel (PIP) is a diverse group of individuals living with PMDD and/or PME. Established in
2021, the group plays an important advisory role in helping us better understand and serve the needs of patients
and families by bringing their unique, and invaluable perspectives directly into IAPMD’s work.
Anna Cole (USA), Ash Wright (USA), Carolina Taylor (USA), Ebony Chantel (Australia), Ellis Smith (They/Them -USA), Lisa
Magil (She/Her - USA)

GLOSSARY / ABBREVIATIONS
AFAB - assigned female at birth
Acceptance and Commitment Therapy (ACT) - a form of psychotherapy that aims to help patients accept what is out of their control, and commit instead to actions
that improve their lives.
Allopregnanolone (ALLO) - a hormone derived from progesterone. The body naturally converts some progesterone to ALLO, so ALLO levels cycle similarly to
progesterone levels across the menstrual cycle. ALLO works on certain receptors in the brain, making it a “neuroactive” hormone. Scientists think that an abnormal brain
response to ALLO may play a role in mood symptoms that occur with PMDD.
Cognitive Behavioral Therapy (CBT) - a form of psychotherapy that focuses on exploring relationships among a person's thoughts, feelings, and behaviors.
Dialectical Behavioral Therapy (DBT) - a form of psychotherapy based heavily on CBT with the exception that it emphasizes validation, or accepting uncomfortable
thoughts (i.e., suicidal ideations), feelings and behaviors.
DSM-5 - the fifth edition of The Diagnostic and Statistical Manual of Mental Disorders. This is the official manual of the American Psychiatric Association. Its purpose is
to provide a framework for classifying disorders and defining diagnostic criteria for the disorders included. The DSM-5 is a specialist document used primarily by mental
health researchers and health care providers in the United States. PMDD was added to the DSM-5 in 2013.
Gonadotropin-releasing Hormone (GnRH) Agonists - a type of drug which acts on the pituitary gland in the brain to suppress ovulation and the production of ovarian
hormones. It puts users in a state of temporary, reversible, chemical menopause.
Hormone Replacement Therapy (HRT) - treatment in which estrogen and often progestin and testosterone are taken to help relieve symptoms that may happen
around the time of menopause/ surgical menopause.
ICD-11 - the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11). This directory is part of the World Health
Organization (WHO) and is a global system of diagnostic classification that is used around the world. PMDD was added to the ICD in 2019, making PMDD an
international diagnosis.
Longitudinal study - a type of correlational research study that involves examining variables over an extended period of time (weeks, months, years).
Luteal Phase - one part of the menstrual cycle that begins right after ovulation and lasts until the time of the period/bleed.
Menarche - the first menstrual cycle, or first menstrual bleeding, in female/assigned female at birth (AFAB) individuals.
Menopause - menopause occurs when the ovaries stop functioning, and as a result, the levels of sex steroid hormones (estrogen, progesterone, and testosterone) fall.
During this time, you may begin to experience common symptoms of menopause, including vaginal dryness, sleep difficulties, mood changes, and hot flashes.
Menopause occurs naturally with age and periods typically become irregular before stopping completely. Menopause can also be triggered by taking certain
medications or with the surgical removal of both ovaries.
Menses - the blood and mucosal tissue from the inner lining of the uterus which is discharged through the vagina. This is known as menstruation or your ‘period’.
Oral Contraceptives - medications used to prevent pregnancy or attempt to decrease monthly premenstrual symptoms by suppressing the menstrual cycle.
Patient Insight Panel (PIP) - a diverse group of individuals living with PMDD and/or PME who play an important advisory role at IAPMD, helping us better understand
and serve the needs of patients and families by bringing their unique, and invaluable perspectives directly into IAPMD’s work.
Perimenopause - the years during the menopausal transition are called perimenopause. This stage can last up to 5-10 years. Periods often become heavier and more
sporadic, and menopausal symptoms (such as brain fog, night sweats, hot flushes, etc) begin to appear. After a year to the day of your last period, you would be
considered postmenopausal.
PMDD Community Coalition (PCC) - a global group of ‘PMDD stakeholders’ (patients, advocates, scientists, health care professionals) who are committed to bringing
the lived experiences of patients to the center of the PMDD research conversation.
Premenstrual Dysphoric Disorder (PMDD) - a cyclical, hormone-based mood disorder with symptoms that start during the two weeks before menses onset and remit
or go away by the end of menses.
Premenstrual Exacerbation (PME) - where an existing or underlying condition or disorder (such as depression or anxiety) worsens in symptoms in the luteal phase.
Premenstrual Syndrome (PMS) - a group of physical and behavioral changes that some women experience before their menstrual periods every month.
Progesterone - a hormone that prepares the uterus for potential pregnancy. Progesterone is secreted by the corpus luteum, a cluster of cells that form in the ovary
after an egg is released (ovulation). Progesterone levels rise after ovulation and drop just before your period starts.
Progestin Sensitivity - having a negative psychological reaction (and in some cases, negative physical reactions also) to taking progestin-based medications.

REFERENCES / CITATIONS
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders
(DSM-5). American Psychiatric Pub.
Biggs, W. S., & Demuth, R. H. (2011). Premenstrual syndrome and premenstrual dysphoric disorder. American Family Physician, 84(8), 918–924
Daw, J. (2002). Is PMDD real? American Psychological Association. https://www.apa.org/monitor/oct02/pmdd
Divine, M., Ozturk, S., Kania, A., Buchert, B., Wagner-Schuman, M., Miller, AB, Eisenlohr-Moul, T. (2019). Lifetime Prevalence of Self-Injurious Thoughts and Behaviors in a
Sample of 591 Patients Reporting a Prospective Clinical Diagnosis of Premenstrual Dysphoric Disorder.
Eisenlohr-Moul, T. (2019). Premenstrual Disorders: A Primer and Research Agenda for Psychologists. The Clinical Psychologist, 72(1), 5–17.
Eisenlohr-Moul, T. A., PhD, & Divine, M. (2020). Prevalence of Lifetime Self-Injurious Thoughts and Behaviors in a Global Sample of 599 Patients Reporting Prospectively
Confirmed Diagnosis with Premenstrual Dysphoric Disorder. https://doi.org/10.31219/osf.io/zfmbg
Eisenlohr-Moul, T. A., Girdler, S. S., Schmalenberger, K. M., Dawson, D. N., Surana, P., Johnson, J. L., & Rubinow, D. R. (2017). Toward the Reliable Diagnosis of DSM-5
Premenstrual Dysphoric Disorder: The Carolina Premenstrual Assessment Scoring System (C-PASS). The American Journal of Psychiatry, 174(1), 51–59.
https://doi.org/10.1176/appi.ajp.2016.15121510
Eisenlohr-Moul, T. A., Kaiser, G., Weise, C., Schmalenberger, K. M., Kiesner, J., Ditzen, B., &
Kleinstäuber, M. (2020). Are there temporal subtypes of premenstrual dysphoric disorder?: using group-based trajectory modeling to identify individual differences in
symptom change. Psychological medicine, 50(6), 964-972. DOI:10.1017/S0033291719000849
Eisenlohr-Moul, T, & Peters, J. (2020). Transgender & PMDD. IAPMD. https://iapmd.org/transgender-pmdd
Epperson, C. N., Steiner, M., Hartlage, S. A., Eriksson, E., Schmidt, P. J., Jones, I., & Yonkers, K. A. (2012). Premenstrual dysphoric disorder: evidence for a new category for
DSM-5. American Journal of Psychiatry, 169(5), 465-475.
Halbreich, U., Borenstein, J., Pearlstein, T., & Kahn, L. S. (2003). The prevalence, impairment,
impact, and burden of premenstrual dysphoric disorder (PMS/PMDD). Psychoneuroendocrinology, 28, 1–23. https://doi.org/10.1016/S0306-4530(03)00098-2
Hantsoo, L., Epperson, C.N. (2015). Premenstrual Dysphoric Disorder: Epidemiology and Treatment. Curr Psychiatry Rep 17, 87 https://doi.org/10.1007/s11920-015-0628-3
Nash, H. C., & Chrisler, J. C. (1997). Is a Little (Psychiatric) Knowledge a Dangerous Thing?: The Impact of Premenstrual Dysphoric Disorder on Perceptions of Premenstrual
Women. Psychology of Women Quarterly, 21(2), 315–322. https://doi.org/10.1111/j.1471-6402.1997.tb00115.x
Ogebe, O., Abdulmalik, J., Bello-Mojeed, M. A., Holder, N., Jones, H. A., Ogun, O. O., & Omigbodun, O. (2011). A comparison of the prevalence of premenstrual dysphoric
disorder and comorbidities among adolescents in the United States of America and Nigeria. Journal of Pediatric and Adolescent Gynecology, 24(6), 397–403.
https://doi.org/10.1016/j.jpag.2011.07.009
Osborn, E., Brooks, J., O’Brien, P. M. S., & Wittkowski, A. (2020). Suicidality in women with Premenstrual Dysphoric Disorder: a systematic literature review. Archives of
women's mental health, 1-12.
Osman, O. T., Sabri, S., Zoubeidi, T., Alharbi, A. I., Rizk, D., Narchi, H., & Souid, A. K. (2017). Prevalence, Severity, and Correlates of Premenstrual Dysphoric Disorder
Symptoms Among Women in the Arabian Peninsula. The primary care companion for CNS disorders, 19(4). https://doi.org/10.4088/pcc.17m02112
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2022

PATIENT-CENTERED PMDD RESEARCH

This version was produced 2022.

The development of this Strategic Plan was funded through a Patient-

Centered Outcomes Research Institute® (PCORI ®) Eugene Washington

PCORI Engagement Award (EAIN 20240).

This plan provides an assessment of the current state of knowledge related to

International Association for Premenstrual Disorders PCORI Project Team,

Professional Perspectives Panel, Patient Insight Panel, and IAPMD's PMDD

Community Coalition (PCC).

Sandi MacDonald; Laura Murphy

Strategic Plan to Advance Patient-Centered PMDD Research

2 A Message from the PMDD Community Coalition

6 Report Contents & Methodology

7 Overview - PMDD: Have We Done Enough or Are We Just Starting?

10 Society, Sexism, Stigma

12 Limitations of the Current Research Workforce

15 Living with PMDD

15 The PMDD Patient Journey

16 Patient Insights & Experiences

21 A Roadmap for Patient-Centered PMDD Research

24 Early Detection & Screening

36 From Vision to Action

38 IAPMD's Patient Insight Panel

39 PMDD Community Coalition Members

Strategic Plan to Advance Patient-Centered PMDD Research

IAPMD is creating a world where people with

Premenstrual Disorders can survive...and thrive.

Learn more about IAPMD at iapmd.org

At IAPMD we create connections – connections that help increase

PMDD Community Coalition Roundtable, we believe we can achieve greater impact

Strategic Plan to Advance Patient-Centered PMDD Research - 1

those who love and care for them.

delivery of their care and support.

needs of each patient.

complex influences of many factors.

Sandi MacDonald, Co-Founder & Sheila H. Buchert, President,

Executive Director, IAPMD Board of Directors, IAPMD

PCC Executive PCC Team Lead

Strategic Plan to Advance Patient-Centered PMDD Research - 2

Outcomes Research Institute (PCORI) Eugene Washington Engagement Award

disruptive impact on quality of life, interpersonal relationships, parenthood, and an individual’s

Pearlstein & Steiner, 2012).

PMDD is characterized by cyclical psychiatric and physical

symptoms that occur in the two weeks prior to the onset of

menses each month

State of the Research

Strategic Plan to Advance Patient-Centered PMDD Research - 3

(PMS) and Premenstrual Exacerbation (PME) in published research.

meaningful and beneficial to patients.

Community Coalition Roundtable in July 2021.

Patient and Provider Research Priorities

1. BIOLOGICAL MECHANISMS OF PMDD

2. EARLY DETECTION/ SCREENING

Strategic Plan to Advance Patient-Centered PMDD Research - 4

what causes PMDD, medication/treatment options tailored specifically to PMDD (with a

addressing the underlying causes), and the development of a treatment roadmap to

facilitate clinical decision-making based on patients’ individual biology and biomarkers

(e.g., genetic testing). Additionally, patients yearned for an increase in provider

education and more natural, complementary treatment options for PMDD.

and researchers who are knowledgeable about PMDD.

development of a blood or saliva-based test) as a priority as it would decrease the time

For an overview of trends in PMDD research up to

2018, review this presentation: "Hotspots & Frontiers:

2022 IAPMD's PMDD Strategic Plan

2022 IAPMD's PMDD Strategic Plan