Guide to Understanding PMDD

In a nutshell

• Premenstrual Dysphoric Disorder (PMDD) is an extreme form of PMS that includes physical and psychological symptoms that are often so severe, they can strain social, family and professional relationships to breaking point.
• It’s estimated to affect 5-10% of reproductive women, but it’s still a widely misunderstood serious and chronic condition that often leads to misdiagnosis.
• There’s a growing body of research trying to determine what causes PMDD, but it’s still unclear. Studies typically look at two things: (1) the woman’s genetics and (2) how she reacts to fluctuating ovarian hormones during the luteal phase (which is when symptoms are present).
• Diagnosing PMDD isn’t a straight-forward path but there’s two things that generally need to happen. The first step is to keep a menstrual diary which tracks symptoms for at least two consecutive cycles. The second part of receiving a diagnosis is when a medical professional will analyse the timing, type and severity of your symptoms.
• Some PMDD symptoms may be treatable through lifestyle changes, natural remedies or medications but other women may need to take antidepressant medication or receive hormone therapy to manage their symptoms.
• If you notice symptoms associated with your cycle are becoming more severe and interfering with your life, the best thing you can do is to have a conversation with your Doctor as soon as possible.
  

PMDD Preface

This guide has been a long time coming.

As with many women’s health issues, there are plenty of questions surrounding Premenstrual Dysphoric Disorder (PMDD), but not enough well-studied or concrete answers.

What we discovered in the process of writing this guide is that there is information (i.e clinical trials and research papers) on PMDD out there, but you have to go digging for it.

Most of it is inconclusive evidence and requires further investigation. Plus, it’s all in science-speak (aka hard to understand).

This means PMDD continues to be poorly understood and in many cases, not managed or diagnosed properly.  

This guide aims to nip this misunderstanding in the bud. We’ve done the reading for you and put it into chapter chunks (in case you want to jump around a bit).

Otherwise, keep on reading through the whole guide in its entirety for a full picture of PMDD.

What is PMDD?  

PMDD or Premenstrual Dysphoric Disorder is described as an extreme form of PMS that includes physical and psychological symptoms that are often so severe, they can strain social, family and professional relationships to breaking point.

The most recent statistics we could find on PMDD indicate an estimated 5-10% of reproductive women suffer from PMDD.

And they make a good point: ‘This number does not account for missed or misdiagnosis nor women whose ovulatory cycle is suppressed by hormonal, chemical, or surgical means.’

After years of debate, PMDD finally appeared as a distinct psychiatric condition in the Diagnostic and Statistical Manual of Mental Health Disorders (fifth edition) of the American Psychiatric Association in 2013.

Despite the growing body of scientific research into its causes and cures, it’s still a condition that is widely under or misdiagnosed; leaving women to discover it for themselves.

Why is this? The sheer lack of support services for women’s mental health and reproductive support could be one major clue, but medical literature explains the importance of getting the diagnosis right.

PMDD is a disorder of consistent yet irregular change in mental health and behaviours.

This irregularity can make it difficult to make a link between PMDD and your symptoms in a psychiatric evaluation.

Treatments are often very different for PMDD from the other mood disorders, so it’s important medical professionals get this diagnosis right.

What’s incredibly alarming is the link between suicide and PMDD; it’s a huge differentiating factor when comparing PMDD with PMS.

The International Association For Premenstrual Disorders (IAPMD) says 30% of women with PMDD will attempt suicide in their lifetime while a larger percentage experience suicidal thoughts and self-harm.

PMDD Symptoms

There are over 150 reported symptoms associated with PMS but for PMDD, there is a stricter diagnostic criteria.

So, how can you tell when your PMS symptoms are something more severe?

You need to be experiencing five or more of these 11 symptoms in such a way that your life is severely impacted.

• Mood changes
• Irritability or anger
• Depression
• Anxiety
• Lack of interest in things you usually enjoy
• Difficulty concentrating
• Fatigue
• Change in appetite
• Insomnia
• Feelings of overwhelm
• Bloating or breast tenderness
  

But.

Before you jump to any diagnostic conclusions, it’s important to remember that the reason why there is so much confusion around PMDD diagnosis is because it can be hard to differentiate mild premenstrual symptoms, which may be annoying, but aren’t severe enough to interfere with your daily life.

Let's break this down further.

The Psychological Symptoms of PMDD
Most women will experience some form of emotional change in the lead up to their period.

You can feel short-tempered, irritable and generally feel low.

But the psychological symptoms of PMDD, to put it into perspective, is when you experience cyclical events of extreme depression that can interfere with your day to day life.

These symptoms will happen a week or two before your period, that’s why they are referred to as ‘cyclical events.’

This psychological symptom of extreme depression can make women suffer debilitating anxiety and have suicidal thoughts.

These kinds of symptoms are what provides the distinct difference between PMDD and PMS; and it is important to know this.

In a quick summary:

PMDD = extremely severe and often disabling hormonal condition that disrupts a woman's life and relationships so completely, she may despair that life itself is not worth living.

PMS = painful and annoying symptoms, but typically manageable to carry on with your day to day.

With PMDD you don’t necessarily have good and bad days, it’s not that black and white. Instead, you have days where things are more manageable and days that are ‘slightly better.’

The Physical Symptoms Of PMDD

On paper, the physical symptoms of PMDD sound similar to PMS; bloating, breast tenderness, irritability, fatigue and so on.

This is where women are often misdiagnosed or their symptoms are dismissed as being PMS.

Despite this, women with PMDD will often experience PMS-like symptoms at an extreme level, which helps in some way to ensure a correct diagnosis.

The two main physical symptoms women experience with PMDD is fatigue and change in appetite.

Some other women also experience nausea, heart palpitations, dizziness and fainting which fluctuate throughout their menstrual cycle.

All of which are side effects of anxiety.

What Causes PMDD?

The exact cause of PMDD is still unknown. If you haven’t already ventured down this path of information overload, let us save you a step.

There are two main possible factors widely spoken about:

1. Being extremely sensitive to changes in reproductive hormone levels during the luteal phase.
2. Genetic susceptibility.

Some studies have demonstrated that PMDD could have a heritability range between 30-80%. However, a significant limitation for most of these studies is the sample size.

Fortunately, there have been some new discoveries made by the researchers at the National Institute of Mental Health (NIMH), that helps us understand how genetic factors can contribute to a woman’s susceptibility to experience PMDD.

And it has a lot to do with how a woman responds to the sex hormones produced by the ovaries during the luteal phase.

NIMH’s study has found that women with PMDD have an altered gene complex that processes the body’s response to hormones produced by the ovaries.

Why is this important? Well, it has established a biological basis for the mood disturbances of PMDD.

What this means is that the extreme emotional or physiological behaviours of a woman suffering from PMDD are completely out of her voluntary control.  

They’ve also published data that supports the theory that the changes in hormone levels, not just the hormones themselves, trigger the symptoms of PMDD.

They are continuing to learn more about this gene complex by recreating what happened in these clinical trials by essentially replicating it in a laboratory setting.

They call it ‘disease in a dish’ which sounds gross, but it’s how they are able to model the human patient that suffers from PMDD to be able to study this more on a molecular level.

NIMH is going to continue studying this gene complex with the aim to help improve future treatments of PMDD patients.

Only time will tell.

Diagnosing PMDD

Diagnosing PMDD isn’t a straight-forward path. But there’s two main steps that help kick-start the process:

1. Keeping a menstrual diary: That’s right, a diary about your period that you can discuss with your doctor.
2. Seeking formal diagnosis from a medical professional: Where they will need to analyse the timing, type and severity of your symptoms (with the help of your menstrual diary).

Keeping a Menstrual Diary

To get a formal diagnosis of PMDD, there is some reliance on the woman to be able to track her daily symptoms for two full monthly cycles.

This self-reporting aims to help your doctor differentiate between mild PMS and moderate to severe PMS and PMDD.  

They also check if any of your symptoms could be due to another underlying psychological condition or disorder.

There are a number of self-reporting questionnaires and tools that have been listed in medical literature.

Here's the main ones we found:

• The Daily Record of Severity of Problems (DRSP): a 21-item measure which allows women to track 11 symptoms across the menstrual cycle.
• Calendar of Premenstrual Experiences (COPE): The COPE diary has been identified as a reliable way to identify fluctuations in behavioural and physical symptoms during the luteal phase. It requires you to complete daily diaries of 22 different behavioural and physical symptoms over two consecutive months.
• The Moos Menstrual Distress Questionnaire (MDQ): Despite the wide usage of MDQ, it hasn’t changed much since it was first developed by Moos in 1968. Because of this, the questionnaire has received a lot of serious criticism. However, it’s still been reported to effectively represent the structure of menstrual cycle symptoms.
• The Premenstrual Assessment Form (PAF): Although valid and reliable, it’s very long (95 questions!) which requires a lot of time to complete and has been criticised for potentially being inappropriate for some clinical and research purposes. So, there has been a shortened version of PAF created, with only 10 questions.  

Next time you speak with your Doctor, you could ask them about these tests and see whether they have a different or similar approach when it comes to tracking symptoms.

Seeking Formal Diagnosis: The 5-Step Criteria

The following criteria is most widely known for diagnosing PMDD, and it’s broken down into five areas.

1. Timing of symptoms: The symptoms need to be present in the final week before your period (i.e during your luteal phase) and start to improve within a few days after you’ve started your period.
   
2. The symptoms experienced: Symptoms are broken down into emotional and physical.
   

Emotional

One or more of the following must be present.

1. Mood swings, anxious, sadness or tearful and increased sensitivity to rejection.
2. Feeling irritable, angry or having increased conflicts with people around you.  
3. Depressed mood, feelings of hopelessness, or self-deprecating thoughts.
4. Experiencing anxiety, tension, and/or feelings of being keyed up or on edge.

Physical

One or more of the following must be present in addition to the category of symptoms above.

1) Decreased interest in usual activities.
2) Finding it difficult to concentrate.
3) Feeling lethargic, easily fatigued or have a lack of energy.
4) Change in appetite; overeating or specific food cravings.
5) Sleeping too much, or can’t sleep at all.
6) A sense of being overwhelmed or losing control.
7) Physical symptoms such as breast tenderness or swelling; joint or muscle pain, feeling bloated or weight gain.

And! You must be showing a total of at least five symptoms when combining the emotional and physical symptoms above.

3. The severity of symptoms: These symptoms need to be causing you significant distress and interfering with your work, school, social activities and relationships.

4. Considering other psychiatric disorders: A medical professional will want to rule out the possibility that these symptoms are not a result of another disorder - such as major depressive disorder, panic disorder, persistent depressive disorder or a personality disorder.

5. Confirmation of the disorder: The symptoms need to be present for a minimum of two consecutive menstrual cycles. The criteria also says that the symptoms need to be checked that they aren’t attributable to the physiological effects of a drug substance or another medical condition.

Hang on, if this criteria exists, then why are so many women still getting misdiagnosed or having to discover it for themselves?

Published on Tidings, Stephanie Anderson shares her personal story of how she discovered she had PMDD and talks to Jayashri Kulkarni, a Professor of Psychiatry at Monash University, about the misinformation around PMDD.

Kulkarni talks about the main reasons why PMDD falls under the radar in the medical community.

Short answer:  Kulkarni said the medical community takes a fragmented approach to diagnosing PMDD.

Longer answer:

Both psychologists and psychiatrists will focus on the mental health and mental symptoms, forgetting about the physical symptoms and body history of the patient.

Given that the nature of PMDD symptoms come and go suddenly within a few days before and just after your period starts, Kulkarni noted that psychological problems don’t operate in the same manner.

Therefore, the key to the diagnosis of PMDD is that the physical and psychological symptoms come and go at the same time of the menstrual cycle.

In Stephanie’s case, she spent time researching the condition herself and took the findings to confirm with her Doctor.

Fortunately, her Doctor agreed with her but the same outcome doesn’t happen for a lot of other women.

Despite this, the diagnosis is only the very start of this painful journey.

While treatment options exist for PMDD, the most effective are not always prescribed.

And while researchers continue to explore the underlying cause of PMDD, we can continue to hold hope that even more effective treatment is on the horizon.

So what are the most effective options to treat PMDD currently?

The Non-Medical Ways to Treat PMDD

Over the years, many treatments have been evaluated for the management of PMDD.

However, the most effective are not always prescribed.  Broadly speaking, some PMDD symptoms may be treatable through lifestyle changes, natural remedies or medications.

A woman may need only one, or a combination to see any improvement in symptoms.

Here’s what’s recommended, and why:

Eat serotonin-boosting foods

Serotonin is a naturally-occurring neurotransmitter that helps us to balance our mood and general wellbeing.

Hormones changes can cause a serotonin deficiency which has historically been associated with depression. Vitamin B6 deficiency has also been associated with depression as well.

The body needs other nutrients to properly make and use serotonin, including vitamin B6.

Another key nutrient for mood is an amino acid called tryptophan which is a precursor to serotonin production.

So filling your diet with foods rich in Tryptophan and Vitamin B6 is the best way to boost your body’s natural production of serotonin.

When you need some Tryptophan in your life, eat:

• Animal Meat (Chicken, Turkey, Red meat)
• Dairy products
• Eggs
• Soy
• Spirulina
• SeaWeed
• Spinach
• Fish/Seafood
• Pumpkin, sunflower seeds, and almonds
• Bananas
• Dates
• Legumes

If you need to up your Vitamin B6, eat:

• Sunflower Seeds/Pistachios
• Fish
• Turkey, Chicken and Red Meat
• Prunes, Apricots and Raisins
• Bananas
• Avocados
• Spinach
  

Aerobic exercise (Cardio)

Even though it hasn’t been well studied for PMDD, there are studies that have found three sessions per week for 60 minutes of aerobic exercise is effective in reducing the symptoms of PMS and PMDD.

If you feel up to it, schedule in some brisk walks, swimming, running or cycling into your diaries.

The other benefit is that exercise increases endorphins which helps reduce stress and improve energy levels.

Herbal Supplements

There isn’t much conclusive evidence to show that supplements can improve PMDD symptoms.  

But a Chinese Herbal Supplement called Xiao Yao Wan has been widely used as an alternative and effective treatment of depression in China.

One study found this supplement does appear to be effective in improving symptoms in patients with depression.

However, it has also been pointed out these trials have poor methodological quality and there is a need for more trials to be conducted that follow international standards.

Before you stock up on the herbs, it's recommended you first consult with your Doctor as taking herbal supplements (although natural) can have side effects on other medication you might be taking.

Acupuncture

Same deal as herbal supplements, there is limited evidence which supports the efficacy of alternative medicinal interventions such as acupuncture.

However, some studies have shown acupuncture treatment can provide relief in symptoms of PMS and PMDD with a 50% or better reduction.

Cognitive Behavioural Therapy

CBT is a non-drug based therapy that can help women find new ways to behave by changing their thought patterns. In this case, it helps women navigate their behaviour and emotions related to PMS and PMDD.

Studies have experimented with this theory and found there was a significant difference in psychological symptoms before and after Cognitive Behavioural Therapy.

Due to the extreme nature of PMDD symptoms, you might reach a point where natural remedies and treatment isn’t helping at all.

That’s when medical treatments may be necessary.

The Medical Ways to Treat PMDD

The medical options to treat PMDD are the same as treating PMS medically. The main two are:

1. Increasing serotonin levels using Selective Serotonin Reuptake Inhibitors (SSRIs) also known as antidepressant medication.
2. Suppressing the changes in ovarian hormones with a Combined Oral Contraceptive Pill (COCP).

However, there are a few things to consider when treating PMDD with these medications.

Using SSRIs to treat PMDD

Multiple studies have confirmed using Selective Serotonin Reuptake Inhibitors for PMDD treatment is effective.

Researchers found that SSRIs kicked in quickly to help women manage their symptoms better within a few days of starting treatment.

Depending on the severity and timing of your symptoms, your doctor may recommend taking the antidepressant medication in the following ways:

Continuous: For women who have severe emotional symptoms such as depression, anxiety, anger and mood swings that happen all cycle round, not just exclusively to premenstrual time.

Luteal phase only: When the medication is taken from day 14 of the cycle (start of ovulation) until the beginning of the period.

Symptom-onset: Taken at the first sign of PMDD symptoms and continued until a few days after bleeding has started.

Are there any side effects I should worry about?  Side effects are dependent on the dose but the most common include nausea (which usually resolves within 4 to 5 days of starting therapy), headaches, insomnia and decreased libido.

You may end up trialling different ones to see which ones work best for you and it’s entirely dependent on your symptoms and your cycle.

Your doctor can help you decide if this is the right option for you.

Taking a Combined Oral Contraceptive Pill (COCP)

Although SRI treatment is considered the first option for treating PMDD symptoms, some women may not want to take them (if they can avoid it) and would prefer to combine their need for contraception and need for PMDD relief.

Taking a COCP has been found to significantly improve the emotional and physical symptoms of PMDD. But it does depend on the type of contraceptive pill you take.

Yaz was the first combined contraceptive to be approved by the FDA (U.S Food and Drug Administration) in 2006 to treat symptoms of premenstrual dysphoric disorder (PMDD) for women who choose to use an oral contraceptive for contraception.

In case you’re interested in why, it’s to do with the ingredients. The type of combination pills that have proven most effective in treating PMDD are those which use a combination of 20mcg ethinyl estradiol and 3mg drospirenone.

But Yaz might not be appropriate for some women.

Treating PMDD requires careful counselling with a Doctor to ensure you are properly informed and recommended the right hormonal contraceptive care.

It’s also important to have a plan for follow-up appointments to monitor your symptoms and progress, especially if you’re suffering significant mood symptoms.

I Might Have It, What Do I Do?

One thing to keep in mind is that it’s normal to experience mild PMS symptoms (feeling irritable, fatigued or bloated).

But as soon as your symptoms become more severe and interfere with your life in an extreme way, then it’s important you speak with your Doctor as soon as you can.

Once you approach this conversation, the quicker you can discover your options and figure out what treatment may be able to help ease your symptoms.

Regardless of whether you have full-blown PMS or seeing signs of PMDD.

If you haven’t started keeping tabs on your cycles and symptoms yet, it’s not a bad idea to start.

However you do this is up to you! Keep a physical diary, download an app or write some notes in your calendar. And seeing as symptoms happen cyclically, having this insight is going to help you plan to take extra good physical and emotional care of yourself during these difficult days.

One last thing.

Please share this guide with the women in your life if you can.

Lifting the lid on these unknown and misinformed topics of women's health is how we're going to continue helping other women, to make more informed choices about our bodies and feel more connected to those who may be on similar journeys.

If you or someone you know is feeling anxious, experiencing depression or thinking about self-harm, you can call Beyond Blue on 1300 224 636, or even chat via their website which is here. If you think it's a bit more of an emergency, you can call Lifeline at 13 11 14, or visit their website here. If you need immediate emergency assistance, please dial 000. International suicide helplines can be found at befrienders.org.