IAPMD Written Submission: FTTW - A Women's Health Plan for Wales
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 5.5% of women and AFAB individuals of reproductive age. 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. PMDD can start or be triggered at any point throughout the reproductive lifetime - from menarche up to perimenopause.
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.
The impact of PMDD
Stat Wales states that there are 971,731 women between the ages of 16 and 64 - PMDD has a 5.5% incidence = 53,445 women in Wales are living with PMDD.
We observe many patients in Wales struggling to receive a diagnosis, support, and appropriate treatment due to limited awareness in the medical community at the primary and secondary levels - and also inadequate specialist centres for onward referrals if needed. This leads to poor health outcomes for women/AFAB individuals - many of which could be avoided with early diagnosis and appropriate treatment.
In recent IAPMD research 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.
Patients in the United Kingdom wait 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
“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 / President, The Royal Society of Medicine (O & G Division)
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.
Below are some recommendations for improving care, support, and treatment for PMDD in Wales:
Equitable
Mandatory training in Premenstrual Disorders (PMDD and PME) for GPs - as the gatekeepers to specialist care, it is vital they can recognise PMDs in patient reporting.
Inclusion of Premenstrual Disorders in any workplace education and policymaking.
Effective
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.
Implementing a cross-disciplinary collaborative care model in treatment for PMDD.
Ensure PMDD is included in the development of a 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.
Efficient
Adequate funding for PMS and menopause clinics across Wales - 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
Inclusion of hormone sensitivity in any development of menopause education - many patients have an extremely hard time during perimenopause due to the increased fluctuations.
Mandatory training in Premenstrual Disorders (PMDD and PME) for professionals who work with any female/AFAB individuals: psychologists, psychiatrists, social workers, nurses, and family planning teams, etc.
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: “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 diagnosis were both revoked in 2019 when the diagnosis of PMDD was given.” ~ Rebecca UK
Person-centred
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 accommodations
Patient-centered, holistic care for those living with premenstrual disorders (and other female conditions).
Access to local care - patients report having to travel far, and even across borders for help.
Timely
Make screening for PMDD a common practice in primary care settings, gynecology, psychiatry, psychology, family planning, and sexual health clinics - as well as for those reporting to A&E in crisis. An integrated screening process within the NHS is needed.
Safe
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 - causing serious and irreversible health decline - thus causing distress, life impairment and additional costs to the NHS.
Support for those living with reproductive mood disorders - PMDD comes with a 30% suicide risk. Adequate funding for mental health support must be allocated -and systems in place for crisis intervention.