“You will notice once you start looking, when you read pieces about mental health, they’ll say depression, anxiety, bipolar, sometimes borderline personality disorder, OCD. PMDD is never mentioned in the discussion. When you talk about women’s health; endometriosis, PCOS, and adenomyosis, It’s the same. PMDD is not included in either conversation and patients just fall through the cracks”.

PMDD: An Overlooked and Little Understood Condition

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 sometimes physical symptoms in the luteal phase of the menstrual cycle for 5-10% of women and AFAB individuals of reproductive age (Hantsoo & Epperson, 2015). Symptoms include depression, anxiety, mood swings, irritability, and often suicidal ideation, 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. 

We observe many patients in the UK struggling to receive a diagnosis, support, and appropriate treatment due to limited awareness in the medical community. 

In 2018, the International Association for Premenstrual Disorders (IAPMD) conducted a first-ever Global Survey of PMDs which showed: 

• Shockingly, patients in the United Kingdom waited an average of 12 years for an accurate diagnosis and saw 11 healthcare providers in the process (Divine et al., 2019). 

• 56.7% reported having lost an intimate partner relationship due to PMDD 

• 98% and 97% feel PMDD puts a significant strain on their intimate partner relationship and family relationships, respectively 

• 42.7% reported problems with parenting due to PMDD, with 10.5% feeling completely unable to parent during PMDD 

• 16.8% reported having lost a job due to PMDD

• Of 591 patients, 86% of individuals with PMDD reported experiencing thoughts of suicide and 30% reported making a suicide attempt during a PMDD episode. This is 50% higher than the suicide risk for major depression. 

Most patients were misdiagnosed with other conditions such as depression, anxiety, bipolar disorder, and borderline personality disorder.  Many often received inappropriate (and sometimes dangerous) treatments. Some were dismissed as just having “normal PMS” but not being able to ‘handle it’ like everyone else. 

Mental health and menstrual health stigma silenced these women and AFAB individuals from speaking out about their experiences with severe premenstrual symptoms and kept them from getting help.

In 2008, a group of researchers and clinicians formed the International Society of Premenstrual Disorders (ISPMD) to develop diagnostic criteria for PMDD (O’Brien et al., 2011). Due in part to their work, PMDD was added to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association) in 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), cross-listed as a disease of the genitourinary system and a depressive disorder. These diagnostic classifications allowed more patients to receive an accurate diagnosis, a critical step toward finding effective treatment, and standardized diagnostic criteria for PMDD for use in research studies. 

The ISPMD also developed standards for the clinical management of PMDD, which helped inform treatment guidelines released later by the American College of Obstetricians and Gynecologists (ACOG) and The Royal College of Obstetricians and Gynaecologists (RCOG)(Nevatte et al., 2013). As yet, there are no targeted treatments for PMDD that treat the underlying hormone sensitivity. Rather, recommended treatments for PMDD either address symptoms or suppress the menstrual cycle. 

Despite the challenges with chemical and surgical menopause, many individuals with PMDD plead with their doctors for drastic options; some as young as their twenties.  These individuals plead for major irreversible surgery to remove their reproductive organs, willing to forfeit dreams of having children because their symptoms are so debilitating and emotionally painful. According to IAPMD’s Global survey, approximately 30% of these individuals feel they may take their lives by suicide without treatment. These are hardly attractive options for a condition that may first appear in adolescence.

The Patient Experience - Women’s Voices

The IAPMD recently formed a Patient Insight Panel to inform our work, and patients in the UK had the following to say about gaining diagnosis, treatment, and support for PMDD:

“PMDD/PME has a huge collective impact on quality of life. In essence, women are losing 25% of their adult life to a state of anxiety and hopelessness (or whichever collection of symptoms affect them most). If they live to 80, that's 60 adult years and 15 lost to PMDD. This is terrifying to read. As someone who suffers from PMDD, and the daughter of a woman I am all but sure experiences the same, this is terrifying to read. This is not trivial.” 

“Research in the area needs to be accelerated because this is simply not a case of 'you need to learn to manage your periods' that so many people believe. It is not bad PMS. It is debilitating and scary and so many women across the world deserve to be taken seriously, and to have access to treatment that will improve their symptoms.”  ~ Kavisha, UK

“I have had to fight for the correct diagnosis of PMDD after being incorrectly diagnosed with bipolar disorder and EUPD in 2014 and heavily medicated with antipsychotic medication and mood stabilisers. The diagnoses were both revoked in 2019 when the diagnosis of PMDD was given.” ~ Rebecca, UK

“I think that unless you actively go out and research yourself many people suffering with PMDD will never know they have the condition or be able to seek the support they need. I feel this onus on the individual to diagnose themselves and have to push for medical diagnosis sorely points out the lack of education and general awareness of the condition. Νot only in the medical field but also in mental health discourse, a light needs to be shone on these conditions as many people can be misdiagnosed with other mental health conditions. It also leaves a lot of women not realising they are suffering with a condition to blame themselves for their symptoms such as self-destructive behaviours, mood-swings, brain-fog and can thus severely lower their self-esteem, quality of life, and life and career prospects. More research leads to greater awareness and this awareness could mean that more women are aware of PMDD/PME. Not only will this help those suffering but will educate wider society on the condition so that the condition is not undermined, and workplaces can appropriately support those diagnosed.” ~ Veronica, UK

Information and education on women’s health

“The fact I had to educate my GP (doctor) and my therapist about the disorder just shows how far we have to go with disseminating information about this little known, but very common disorder. It was a humiliating process to try and explain that I know I have something that they just passed off as PMS at first.” ~ Lauren, UK.

There is a lack of awareness around PMDD, coupled with limited (or no) training for GPs, gynaecologists, and mental health professionals.  This leads to poor health outcomes for women and AFAB individuals:

“At the moment there is very little in the training curriculum for GPs for PMS and PMDD, it is only if the GP takes an interest in this area that they can take courses. Otherwise they can come out of their training without the skills to deal with this condition, which has become an obstacle for people to get a diagnosis.” ~ Dr. Nick Panay, IAPMD Clinical Advisory Board Member

There needs to be a greater understanding and awareness of PMDD within both the medical and lay communities, alongside training for healthcare practitioners in PMDD assessment [Osborn, E]. The findings of the recent study by Elizabeth Osbourn highlights the critical importance of the accurate and timely detection of PMDD, with the aim of preventing women from experiencing severe and prolonged psychological distress.

Women’s health in the workplace

In a large survey undertaken by IAPMD - 16.8% reported having lost a job due to PMDD.

Women are leaving the workforce through voluntary and/or involuntary turnover, sometimes giving up on careers entirely. The interviews also highlighted that organizations need greater awareness and support mechanisms in place for helping female employees with this condition [Hardy C].  “After symptoms disappear (with onset of menstruation), women reported feelings of guilt and engage in over-compensatory behaviors such as working longer hours and taking work home during the remainder of the menstrual cycle (i.e. post-episode phase). Women alternate between these phases every month, which over time, accumulate and have additional consequences.”

Reasonable accommodations in the workplace are often all that is required for those with PMDD - like flexible work arrangements, home working, and the ability to wear noise-canceling headphones, etc. are all useful. 

PMDD and stigma

"There is so much stigma around mental health generally, but also around periods and menstrual health, and so when you have the two combined it's like a double whammy. I think women have been labelled as hysterical for centuries, when our brains are affected by the changes in hormones. Doctors need to not dismiss women, we need to listen to women more." - Dr Hannah Short, IAPMD Clinical Advisory Board Member

Menstruation and mental health are two historically stigmatized areas. As Dr Short highlights above, this ‘double whammy’ can often mean that those needing help do not seek support. Continuing work in BIPOC and underprivileged communities, utilizing community leaders and groups needs to continue at a grassroots level to break down this fear. 

As previously mentioned, in an IAPMD survey, 42.7% reported problems with parenting due to PMDD, with 10.5% feeling completely unable to parent during PMDD. These parents with severe PMDD often report being too scared to seek help as they do not want to be labelled as being unable to look after their children or for fear of having the children removed from them.

Below are some recommendations for improving care, support, and treatment for PMDD in the UK:

1. Mandatory training in Premenstrual Disorders (PMDD and PME) for GPs. As the gatekeepers to specialist care, it is vital that GPs can recognise PMDs in patient reporting.

2. Mandatory training in Premenstrual Disorders (PMDD and PME) for professionals who work with any female/AFAB individual:  psychologists, psychiatrists, social workers, nurses, family planning teams, etc. 

3. Patient-centered, holistic care for those living with premenstrual disorders (and other female conditions). 

4. Ensure PMDD is included in the development of the secondary school education syllabus - defining what kind of mood shift is ‘normal’ and what to do when the mood shifts are outside of this range. Thus saving years of suffering alone.

5. Adequate funding for PMS and menopause clinics across the UK - currently the waiting lists are long, and private care is out of reach for many. Many GPs are also unwilling to refer as they are lacking information about these services

6. Adequate funding for mental health support -and systems in place for crisis intervention.

7. Better training for health care providers and an integrated screening process within the NHS. 

8. The reintroduction of Women’s Health Clinics (whilst being inclusive of all gender identities) - a ‘one stop shop’ with professionals trained in a variety of female health conditions.

9. Implementing a cross-disciplinary collaborative care model in treatment for PMDD. 

10. Make screening for PMDD a common practice in primary care settings, gynaecology, psychiatry, psychology, family planning and sexual health clinics. 

11. Inclusion of hormone sensitivity in any development of menopause education - many patients have an extremely hard time during perimenopause due to the increased fluctuations.

12. Inclusion of surgical menopause in the development of any menopause care improvements - PMDD patients who have had a bilateral oophorectomy often report that there is little, to no aftercare once they have had their surgery - simply passed back over to their GP for HRT management - which is not adequate for those in surgical menopause.

13. Develop treatment targeted to PMDD including psychotherapy, skills/lifestyle modifications, and medications.

14. Menstrual tracking made part of screening as part of the mental health screening process - for PMDD and also PME. We hear so many reports of opportunities for diagnosing PMDD  being missed - especially in mental health settings.

15. Joint working with relevant agencies to develop access to financial benefits to those who are living with cyclical, reproductive health care issues, such as PMDD/Endometriosis. Those with more severe symptoms often struggle to maintain employment, even with reasonable accomodations

16. Inclusion of Premenstrual Disorders in any workplace education and policy making.

IAPMD’s Global PMDD Community Coalition

With its recent inclusion in the DSM-5 and ICD-11, PMDD is emerging as a global public health problem - gaining mainstream attention through various sociopolitical movements - mental health, menstrual health, women’s rights, suicide prevention, medical gaslighting - and strong patient activism campaigns to raise awareness. 

In 2013, the International Association for Premenstrual Disorders (IAPMD) was formed by patients as a global organization with a mission to inspire hope and end suffering in those affected by Premenstrual Disorders (PMDs) through awareness and education, peer support, advancing research and advocacy. 

In 2021, IAPMD received funding through a Patient-Centered Outcomes Research Institute® (PCORI ®) Eugene Washington PCORI Engagement Award (EAIN 20240) to establish a PMDD Community Coalition (PCC), a collaborative of patient and professional stakeholders who will convene in a Roundtable during summer 2021 to outline a strategic plan and guidelines for patient-centered outcomes research into PMDD. The PCC Roundtable will help improve patient outcomes by aligning stakeholders along common goals and setting direction for future PMDD research.

In addition to IAPMD’s patient connections, the organization works closely with clinicians and leaders in PMDD across multiple disciplines (psychiatry, gynaecology, social work, nutrition, etc.) through a 10-member Clinical Advisory Board and 6-member Surgical Menopause Advisory Committee’s. Beyond these advisory committees, IAPMD has a network of 300+ clinicians in a peer-recommended PMDD Provider Directory and established relationships with expert clinical networks like the International Society for Premenstrual Disorders (ISPMD). The IAPMD is strongly networked into various PMDD research labs, including those of leading scientists on the DSM-5 PMDD Working Group, with strong lines of communication available to most of the research laboratories studying the pathophysiology and treatment of PMDD. Crucially for dissemination of findings, IAPMD also has strong connections with relevant scientific training programs throughout the UK, US, and abroad. 

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