Facts & Figures
This page aims to share some useful facts and figures about what is currently known about Premenstrual Disorders. For media requests, please email media@iapmd.org. Please quote iapmd.org/facts-and-figures (@iapmdglobal on socials) as the source when sharing any data.
Looking for more information? We also have a large, searchable knowledge base full of information full of answers to common questions:
PMDD - Premenstrual Dysphoric Disorder
Overview
PMDD (Premenstrual Dysphoric Disorder) is a hormone-based mood disorder.
PMDD is caused by an abnormal brain reaction to normal changes in hormones across the cycle. Those with PMDD have normal hormone levels and normal ‘fluctuations,’ but the brain cannot adapt to these normal monthly changes for an unknown reason.
Common symptoms include anger, irritability, depression, and anxiety that are severe enough to cause distress or interfere with daily activities.
These symptoms ONLY happen during the 1-2 weeks before their menstrual period starts - so the symptoms look like a severe mood disorder, but they are only present in that premenstrual window.
There is no single experience of PMDD. Symptoms can be mild, moderate, or severe.
PMDD was added to the DSM-5 in 2013 as a depressive disorder. Previously, PMDD was included in the appendix of the DSM as a condition for further study.
PMDD was added to the ICD-11 in 2019 as a disease of the genitourinary system, cross-listed as a depressive disorder. This classification helped to validate PMDD as a legitimate medical diagnosis worldwide.
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.
Early research findings indicate that there may be PMDD subtypes.
PMDD does not cause heavy periods/cramps/period pains - although premenstrual cramping/bloating/breast pain be symptoms. PMDD is an abnormal brain reaction triggered when ovulation occurs.
A hysterectomy is not a ‘cure’ for PMDD. Surgery (removal of the ovaries resulting in surgical menopause +/- a hysterectomy) is the last line in treatment reserved only for those with severe symptoms who have not gained relief from available options.
In 2016, researchers at the National Institutes of Health (NIH) found that those with PMDD are more sensitive to the effects of sex hormones estrogen and progesterone, due to a molecular mechanism in their genes. Researchers compared white blood cells in women with PMDD and those without and confirmed that those with PMDD have an altered response to sex hormones at the cellular level.
Prevalence
The best quality data we have shows a 5.5 prevalence of PMDD in women and AFAB individuals of reproductive age. 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.
This number does not account for missed or misdiagnosis nor women or AFAB individuals whose ovulatory cycle is suppressed by hormonal, chemical, or surgical means.
PMDD is about as common as diabetes in females (female prevalence of about ~5-6%, per the CDC, compared to the PMDD prevalence of 5.5%)
How many women/AFAB individuals live with PMDD? (Figures based on a 5.5% prevalence of women/AFAB individuals of reproductive age (15-49). WHO 2022 data.)
- 4.2 million in the United States
- 824,000 in the UK
- 475,000 in Canada
- 328,000 in Australia
- 19,700 in The Netherlands
- 1.3 million in Japan
- 20 million in India
Diagnosis
There is currently no blood test to diagnose PMDD. Diagnosis should be made by careful daily symptom tracking over a minimum of two months.
Unpublished data from the IAPMD Global Survey indicates that:
- Patients waited an average of 12 years to receive an accurate diagnosis of PMDD.
- Patients saw an average of 6 different medical providers before receiving a diagnosis of PMDD.
Is it not known how many are currently diagnosed/undiagnosed with PMDD.
Despite recent press to the contrary, it is not known how many people with PMDD also have ADHD/Autism. However, large studies are underway to study these important issues properly.
Impact
The following findings highlight the need for more research on detecting and preventing suicidal thoughts and behaviors in PMDD. They also emphasize the need for clinical practice guidelines for PMDD that include frequent screenings for suicide risk.
72% of people with prospectively-diagnosed PMDD (e.g., diagnosed with two months of daily symptom ratings) report thoughts of suicide at some point in their lives. This is much higher than the general population, where approximately 10% of people report lifetime thoughts of suicide.
49% of people with prospectively-diagnosed PMDD have planned for a suicide attempt at some point in their lives.
34% of people with prospectively-diagnosed PMDD have made a suicide attempt at some point in their lives. This is much higher than the general population, where approximately 3% of people have attempted suicide.
The symptoms of PMDD can be debilitating and often have a disruptive impact on quality of life, interpersonal relationships, parenthood, and an individual’s capacity to sustain employment.
Research
A recent review of the literature has shown an uptick in PMS/PMDD research publications over the past decade.
Among the top countries contributing to the research are the United States, England, and Sweden.
Published scientific literature revealed that the physical and behavioral symptoms of PMDD had the potential to affect the quality of life, in terms of health, to the point of disability. Based on the Global Burden of Disease (GBD), it is estimated that those with PMDD experience a total of 1,400 days or 3.835 years of Disability Adjusted Life Years (DALYs) lost due to the disorder.
You can find a Guide to Conducting Rigorous, Patient-Centered PMDD Research and a Strategic Plan to Advance Patient-Centered PMDD Research here.
PME - Premenstrual Exacerbation
Overview
Premenstrual Exacerbation (PME) refers to the premenstrual exacerbation/worsening of the symptoms of another disorder, such as major depressive disorder or generalized anxiety disorder.
PME (Premenstrual Exacerbation), similar to PMDD, involves hormone sensitivity, in which the brain is unusually sensitive to normal changes in hormones. However, in PME, the person always has a level of symptoms that meet criteria for a clinical diagnosis (e.g., depression, bipolar disorder, borderline personality disorder), but their symptoms have a menstrual cycle-based pattern of getting significantly worse.
Both PME and PMDD are described as “Core Premenstrual Disorders” by an International Group of Experts.
Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME) can be difficult to distinguish from each other, and it is not understood how much they represent the same vs. different issues. Careful daily tracking of symptoms can be helpful to clarify the diagnosis and determine which symptoms may be cycling (vs. stable). In practice, most clinicians currently provide similar treatments to those with PMDD and PME. A small number of studies suggest that PME of depression may not respond as well to typical PMDD treatments, but there are too few studies to know for sure.
Status
Despite years of research studies demonstrating the occurrence of PME in various disorders, PME is not yet acknowledged as an official diagnostic specifier in the DSM-5 or in any other diagnostic classification system.
The larger amount of research conducted on PMDD has led to PMDD becoming an official diagnosis, whereas the research on PME is still lagging behind, and it remains a phenomenon studied in research but not yet diagnosed and treated clinically (similar to PMDD prior to 2013!).
Prevalence
PME has been demonstrated that many different psychiatric disorders - not all women/AFAB individuals with psychiatric disorders are sensitive to hormone changes.
We know, however, that PME is a widespread problem, as it has been observed to be common in a variety of populations. However, larger studies are needed before we can determine the prevalence of PME in other disorders.
Depressive Disorders - The biological underpinnings of PME in females with depression is a critically understudied area. Around 60% of females with a depressive disorder experience clinically significant worsening of at least one symptom in the premenstrual phase. A large study found that 60% of females with depression had premenstrual exacerbation of symptoms.
Research on this topic is rapidly progressing, and each year we learn about another disorder that can be complicated or worsened among women/AFAB who are sensitive to hormone changes. A recent review found evidence of PME for psychotic disorders, panic disorder, eating disorders, depression and borderline personality disorder.
IAPMD - International Association of Premenstrual Disorders
The International Association for Premenstrual Disorders (IAPMD) is a not-for-profit organization providing education, support, advocacy, and resources for those affected by Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation of underlying disorders (PME).
Our Mission - To inspire hope and end suffering for those affected by premenstrual disorders through peer support, education, research, and advocacy.
Our Vision - The IAPMD aspires to create a world where people with PMDD and PME can survive and thrive.
View our Annual Reports.
2013 - Amanda LaFleur and Sandi MacDonald founded the National Association for Premenstrual Dysphoric Disorder (NAPMDD) in the same year that PMDD was added to the DSM-5.
2013 - PMDD Awareness Month starts annually in April.
2015 - PMDD Conference | Aug | Colorado, USA.
2016 - PMDD Conference | Sept | Philadelphia, USA.
2017 - NAPMDD merged to become The Gia Allemand Foundation.
2018 - PMDD Conference | May | Florida, USA.
2018 - We went GLOBAL as the International Association for Premenstrual Disorders (IAPMD) to broaden our focus to the global premenstrual disorder community. Since our founding, we’ve helped over a million people from approximately 100 countries find answers, community, and hope.
2021 - IAPMD Roundtable: A New Light on PMDD Research | July| Virtual - A first-of-its-kind event convening patient and professional experts on PMDD around the ‘same table’ to discuss current research and pave the way for patient-centered research going forward. View recordings >>
2022 - We incorporated PME in our Awareness month - making 2022 the world’s first PMD Awareness Month!
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