WHAT IS PMDD?
PMDD is a severe hormonal condition triggered by the steroid allopregnanolone. It is not a mental illness. It is way more severe than typical PMS. It is a biological, not behavioural, condition.
PMDD symptoms are cyclical—and debilitating: They build up in the two weeks before a period (the luteal phase), peak in the week directly before, and then recede quickly when the period starts.
Emotional symptoms: extreme mood swings, severe irritability and/or anger, depression, feelings of hopelessness and low self-worth (women with PMDD are four times more likely to attempt suicide), anxiety, feeling overwhelmed and out of control, difficulty concentrating.
Physical symptoms: Joint pain, back pain, migraine, abdominal bloating, breast tenderness, exhaustion.
PMDD is a recognized clinical condition, you have every right to seek help for. In Europe and the US medical guidelines recognize PMDD as a specific condition with clearly identified symptoms. There is no need to ‘suffer in silence’ or for symptoms to be mistaken for bipolar illness or depression.
PMDD or PMS?PMDD is the most severe form of PMS. Symptoms are debilitating and unmanageable. The US DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) states that if you have FIVE of ELEVEN symptoms so severely they affect your life, and that they occur most heavily in the week before your period, you could be suffering from PMDD. The DSM-5 splits the symptoms into two groups:
- Marked mood swings, feeling suddenly sad or tearful, or increased sensitivity to rejection.
- Irritability, anger or increased interpersonal conflicts.
- Feelings of depression, hopelessness or having self-deprecating thoughts.
- Anxiety, tension, continuous feeling of being ”on edge”.
- Withdrawal, lack of interest in people and activities you usually enjoy.
- Difficulty concentrating.
- Feeling exhausted, getting very tired easily, lack of energy.
- Changes in appetite or food cravings.
- Hypersomnia or insomnia.
- Feeling overwhelmed or out of control.
- Physical symptoms like breast soreness or swelling, joint or muscle pain, or feeling bloated
WHAT CAUSES PMDD?
PMDD SUPPORT GROUPS
PMDD support groups are playing an important, and growing, role in raising awareness around PMDD. As well as offering practical information on tracking and managing symptoms they also help lobby and raise awareness around diagnosis and treatment options.
The National Association for Premenstrual Syndrome (UK)
International Association for Premenstrual Disorders (IAPMD)
Vicious Cycle: Making PMDD Visible
PMDD Awareness UK (Facebook user group)
PMDD Moms (Global Facebook user group)
Starke Regelschmerzen und Menstruationsbeschwerden (Germany, Facebook user group)
Me v PMDD
ITA-PMS (Italian National Association for PMS & PMDD) Associazione Nazionale Sindrome Premestruale e Disturbo disforico premestruale
5 PMDD MYTHS
MYTH: “PMDD is just another type of PMS, it’s a normal part of life.”
REALITY: PMDD is not the same as PMS. True, many symptoms are the same. The difference is the severity. PMDD symptoms are debilitating, unmanageable and often described as “PMS X 1,000”. Women with PMDD are four times more likely to attempt suicide. A third suffer from suicidal thoughts. Sufferers can struggle to maintain jobs, relationships and families. Common descriptions include “it’s a week of living hell”, “I don’t recognize myself” and “I have no control over anything”. 5% of young to middle-aged women worldwide suffer from PMDD.
MYTH: “No one knows for sure what really causes PMDD.”
REALITY: In fact there is growing medical evidence and strong data on the causes. Women with PMDD have a heightened sensitivity to allopregnanolone, a GABA steroid closely connected to the sex hormone progesterone. In the two weeks leading up to a period, the body starts producing increased amounts of both. These increasing allopregnanolone levels influence the GABA-A receptors in the brain’s emotional center. The result, for women overly sensitive to allopregnanolone, is overpowering emotional symptoms: irritability, mood swings and more. When menstruation begins, allopregnanolone levels decrease and symptoms rapidly subside.
MYTH: “It’s mind over matter, you can pull yourself together”
REALITY: PMDD is a proven hormonal condition triggered by the steroid allopregnanolone. It is way more severe than typical PMS and it has a strong hereditary element too. Approx. 50% of sufferers’ mothers lived with it as well. It’s true some women are able to manage symptoms better through natural methods like meditation or yoga. But for the majority these have no effect on relieving or reducing symptoms – nor should they be expected to. With symptoms including suicidal thoughts and negative self-thinking, growing numbers of healthcare professionals are advocating for increased PMDD awareness and clear, committed diagnosis.
MYTH: “PMDD is a mental illness”
REALITY: PMDD is a hormonal condition. However, because symptoms include mood swings, depression and self-destructive thoughts, it is sometimes mistaken for bipolar disorder. Establishing a Menstrual Diary, or using one of the many PMDD tracking Apps currently available, like Me v PMDD, is the way to diagnose PMDD. PMDD symptoms are most severe in the two weeks building up to a period, then recede once it starts. If your Menstrual Diary shows emotional symptoms throughout your cycle it is more likely you are suffering from depression or anxiety which gets exacerbated by PMS. In the US PMDD was officially categorized as a ‘depressive disorder’ in 2013 in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). In Europe, an EMA Guideline on PMDD came into effect in 2013, but it is still frequently un-diagnosed, or mistaken for bipolar disorder or depression.
MYTH: “There are several treatment options for PMDD”
REALITY: None of the current treatments for PMDD were developed specifically to treat the condition. The two most common are SSRI antidepressants and hormone birth control pills.
ORAL CONTRACEPTIVES (OC)
Efficacy: MIXED. Only some preparations relieve symptoms, in some patients. Generally OC’s worsen symptoms since they include synthetic progesterone compounds that, when metabolized, act similarly to the compounds that trigger PMDD.
Side effects: can include nausea, headaches, weight gain, decreased libido, increased risk of thrombosis, and severe negative mood effects.
Efficacy: MODERATE. ‘Moderately effective’
Side effects: Loss of libido, weight gain, sleep disturbance. 46% of PMDD patients in the US discontinue SSRIs within 6 months due to side effects.
Efficacy: HIGH. Ovulation is suppressed and menopause induced prematurely. Only prescribed to long-term patients who have not responded to other treatments. Requires careful add-back of female hormones.
Side effects: decreased bone density and osteoporosis, careful monitoring essential
HYSTERECTOMY AND BILATERAL OOPHORECTOMY.
Efficacy: HIGH. Surgical intervention is currently the only permanent cure for PMDD
Side effects: The ethics of carrying out irreversible surgery to prevent PMDD varies from country to country
Help develop the first targeted PMDD treatment>
PMDD STUDY SPOTLIGHT: Liverpool UK
DR PAULA BRIGGS, LEAD STUDY INVESTIGATOR, LIVERPOOL WOMAN’S HOSPITAL, CONSULTANT IN SEXUAL AND REPRODUCTIVE HEALTH
STRONG FAMILY SUPPORT
Families and partners play a vital role too. “Partners often accompany women on their first visit. Many patients discuss volunteering with their families so it’s a joint decision.” says Dr Briggs. “They know that at the end of the Study the drug won’t be available instantly. But there’s a vested interest in helping develop a treatment so that other women don’t have to suffer like they do. Volunteers aren’t just thinking of their own treatment, but their daughters’ and granddaughters’ too.”
EXCEPTIONAL EMPATHY TAKES TIME
Hand-in-hand with this high motivation is the need for strict entrance criteria. PMDD symptoms include anger, irritability and uncontrollable emotional outbreaks. It’s a complex condition that often straddles many mental health issues. So the need for careful, thorough screening is critical—to be absolutely sure that volunteers have pure hormonal PMDD not exacerbated by any other mental health conditions. Such careful screening takes a lot of time and sensitivity.
“We have a fantastic Study Nurse, Pam, who is wonderfully empathetic and supportive when dealing with this patient population. She’s a good listener and conducts a huge number of telephone consultations to be 100% sure that women are eligible. The PMDD electronic diaries the women keep provide extremely detailed, useful information. So when patients arrive for their first visit they’re virtually all suitable. It’s time-consuming and requires a lot of empathy, but the patients are screened brilliantly.”
PMDD is destabilizing and exhausting. It can be tough for volunteers to keep up their diary—so flexibility in the Study is important. “Sometimes patients are motivated, but still the condition overwhelms them. If Pam sees that they haven’t been filling out their diaries, she phones them. Sometimes we’ve had to let patients have extra cycles just to keep them in the Study, and whilst this is not ideal, when we phone and offer them the option they’re extremely happy and really want to keep doing it.”
THE FIRST DEDICATED THERAPY FOR PMDD
“Virtually everyone in the Study has tried other treatments that didn’t work.” says Dr Briggs. “Typically SSRIs, combined pills, Mirena with add back oestrogen or Gabapentin. It’s rewarding to be involved in a Study that’s developing a completely new treatment for this condition.”
DR PAULA BRIGGS
Consultant in Sexual and Reproductive Health for Southport and Ormskirk Hospital NHS Trust.
Dr Briggs is a clinician, researcher and educator in the field of women’s health. She is a Fellow of the Faculty of Sexual and Reproductive Health Care (Royal College of Obstetricians and Gynaecologists) and has a Diploma in Gynaecology (Bradford University). She is an Honorary Senior Lecturer at Liverpool University.
She has co-edited three books, co-authored a textbook in Obstetrics and Gynaecology and a revision book for the membership exam for the Faculty of Sexual and Reproductive Healthcare and been the author/co-author of twenty scientific papers. She is married with four children and enjoys running, golf, reading and cooking.