Beginners guide PMDD
Life with PMDD

The Beginners Guide to PMDD

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Did you just find out that you have PMDD (Premenstrual Dysphoric Disorder) or strongly suspect to have it? A close friend of yours, a family member or your partner suffers from premenstrual disorders that you think might fall within the definition of PMDD? Have you searched for PMDD but don’t know where to start?

Don’t worry, you are in the right place. Here for you the guide that I would have found and read three years ago when for the first time I heard about PMDD. I will never forget the feeling of being lost and overwhelmed by the thousand information that bombarded me and uncertain about what exactly to search for.

That’s why I have written this PMDD guide: I didn’t want you to be in the same dark place I was at that time. I want to save you time searching and collaging tons of information and trying to make sense of it.

Here you’ll find all the essential information that you need to get an overview of this disorder, packed in a guide that is easy to read and remember, without any technical-scientific or medical terms.

This information forms the basis of your knowledge, on which you can build up more detailed tips and data when all the basics are clear in your mind.

So let’s start from the basics!

The Beginners Guide to PMDD

Back in 2018, when I realised to have PMDD, I had no idea what it was… to tell the truth, I didn’t even know it existed! As I usually do, I immediately turned to my friend Google, who provided me with dozens and dozens of articles to read.

Too Much Information for me to process. I felt emotionally and mentally overwhelmed.

Try and visualise the situation for a moment: you are not well, you no longer feel yourself, you have uncontrolled outbursts of anger and emotions, excruciating migraines, brain fog, physical discomfort, mood swings, cyclical depression, and much more. This has been going on for a while and you just managed to connect the dots and realise that ‘MAYBE’ these symptoms are linked to your menstrual cycle. Basically, you’re not out of your mind!

So you turn to Dr Google who provides you with lots of websites and articles. You do not have either the physical or mental energies to go through them but, do you have any other choice? You feel overwhelmed by the thousand of information to process and would like someone to sit there next to you, who would provide you with the basic information you need.

I bet it’s not been hard for you to put yourself in this situation…

Well, I will be that someone who gives you only the essential information to get started!


What is PMDD?

Premenstrual Dysphoric Disorder (PMDD) is a severe form of premenstrual syndrome that affects about 5.5% (1 in 20!) of women and AFAB (Assigned Female At Birth) individuals of reproductive age. It’s a cyclical, hormone-based mood disorder with psycho-behavioural and somatic symptoms that occur during the premenstrual phase (or luteal phase) and, in general, disappear with the arrival of menstruation (in some cases, the symptoms have been found to persist even during the menstrual phase).

… and what is not

PMDD is not a hormonal imbalance! It’s a negative reaction of the brain to the normal fluctuations of estrogen and progesterone during the luteal phase of the menstrual cycle.

Symptoms of PMDD

The most common symptoms are:

  • Mood/emotional changes (e.g. mood swings, feeling suddenly sad or tearful, or increased sensitivity to rejection)
  • Irritability, anger, or increased interpersonal conflict
  • Depressed mood, feelings of hopelessness, feeling worthless or guilty
  • Anxiety, tension, or feelings of being keyed up or on edge
  • Decreased interest in usual activities (e.g., work, school, friends, hobbies)
  • Difficulty concentrating, focusing, or thinking; brain fog
  • Tiredness or low-energy; severe fatigue
  • Changes in appetite, food cravings, overeating, or binge eating
  • Hypersomnia (excessive sleepiness) or insomnia (trouble falling or staying asleep)
  • Feeling overwhelmed or out of control
  • Physical symptoms such as breast tenderness or swelling, joint or muscle pain, bloating or weight gain.

Symptoms can worsen over time or during major events such as menarche (the first menstrual cycle), pregnancy, childbirth, abortion and perimenopause.

Individuals with PMDD present a greater risk of suicidal behaviour. Besides, many people (though not all) confirm that they have had a history of sexual abuse or depression.

Diagnosis

A diagnosis of PMDD requires the presence of at least 5 of these symptoms, one of which must be a “main emotional symptom” (one of the top four on the list). These symptoms must occur in the week (or two) before the cycle, the so-called luteal or lutein phase, and disappear with it. The symptoms must also be severe enough to adversely affect daily activities, work, school, social activities and/or interpersonal relationships.

There is no blood or saliva test to diagnose the dysphoric disorder, although these tests can rule out other underlying disorders (e.g. chronic fatigue syndrome, endometriosis, fibromyalgia, hormonal imbalances, depression, bipolar disorder, etc.).

The only way to diagnose PMDD is to track your symptoms through a menstrual diary for at least two to three cycles.

Important dates to know

2013 – PMDD is added to the list of depressive disorders in the Diagnostic and Statistical Manual of Mental Disorders.

May 2019 – The PMDD is added to the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11). It is included among the diseases of the female urogenital system, although it is cross‐listed in the subgrouping of depressive disorders due to the prominence of mood symptomatology.

This is a significant step because it recognises PMDD as a legitimate medical condition worldwide and, as such, it will now require diagnosis and treatment by medical professionals.

The DEFINITION of the ICD-11 is as follows:

During a majority of menstrual cycles within the past year, a pattern of mood symptoms (depressed mood, irritability), somatic symptoms (lethargy, joint pain, overeating), or cognitive symptoms (Concentration difficulties, forgetfulness) that begin several days before the onset of menses, start to improve within a few days after the onset of menses and then become minimal or absent within approximately 1 week following the onset of menses. The temporal relationship of the symptoms and luteal and menstrual phases of the cycle should ideally be confirmed by a Prospective symptom diary over at least two symptomatic menstrual cycles. The symptoms are severe enough to cause significant distress or significant impairment in personal, family, social, educational, occupational or other important areas of functioning and do not represent the exacerbation of a mental disorder.

How to get started with PMDD

How to get started with PMDD
1. The first thing I recommend you to do is to track your period for at least two or three cycles.

There are a lot of tools that can help you with this, you just have to choose the one that suits you best and that you are more likely to use. From a simple personal journal to a specific app on your phone. There is no better method than another: there is only one that works best for you.

I’ll leave you some ideas below:

  • If you are more of a paper and pen type, you can track the days of your cycle and the corresponding symptoms in your journal (you can use a more sophisticated bullet journal, if you are familiar with this method)
  • If, however, your mobile phone knows all your most intimate secrets, you can use one of the many specific Apps to track the menstrual cycle. Here are some names for you to try.

Personally, I use a combination of the two: I track my cycles with the Period Diary App on my phone (I have been using it for a few years) while I write down all of my symptoms in my bullet journal because I like to have the overall vision month by month.

2. Go to your GP to validate the diagnosis.

Now that you have the history of your last two/three cycles, take them with you to your general practitioner. Describe how you feel, what PMDD means to you and show him your diary… and stay as much calm as possible (I know, easier said than done!).

Many doctors still don’t know enough (or anything at all) about PMDD, so don’t be discouraged on the first try. If they don’t take you seriously, insist on and support your cause: bring with you some printable resources (visit the IAPMD website for lots of useful downloadable); ask a family member or a dear friend to come with you for moral support. As a last resort, try another doctor!

And remember that, at some point, you’ll know more about you and your condition than the majority of the doctors that you’re going to consult. As frustrating as this can sound, it’ll give you the strength and confidence to move forward.

3. Consult a specialist: in this case a good gynaecologist

Again, don’t be afraid to pursue your cause with tenacity and conviction. A good gynaecologist can first ascertain that there are no other underlying disorders. Then they will be able to recommend the most suitable therapy for you, according to your physique, needs and clinical history.

4. Ask for help

Never underestimate the power of being helped!

Family, friends, partners, specialized associations, peer support: whatever your closest and most plausible source of help is, USE IT!

Be open and honest with those around you about your condition and explain how you feel. No matter if they won’t fully understand: they will, at least, be aware of your discomfort and can help you as much as they can. Figure out what kind of help you can ask for/receive from each person and lighten your load.

For example, if your mom likes cooking and is a laundry magician, you can delegate these tasks to her. This won’t take away your troubles, but at least it’ll give you some time to rest. If you have a close friend that you can talk to openly and from which you feel understood, take it out on her, call her when you’re at your least. She might fully get your discomfort or she might not: it doesn’t matter. It’s important that you feel heard.

Make a note of what the most debilitating symptoms are for you and ask for help in the days when they will strike you (another good reason for keeping a menstrual diary, to anticipate your dark days).

5. Connect with the PMDD Community

The feeling of being understood, accepted, free to say how you feel is priceless. Getting in touch with a network of women who are on the same journey and share similar experiences is one of the key things to do!

You won’t need many words to explain or excuses, you won’t have to justify your foolish behaviour and you will feel safe to describe what’s going on inside you without any shame or misunderstanding.

There are several Facebook groups and international associations that deal with premenstrual disorders and offer support. I leave you some contacts below:

6 Useful Tips to calm down PMDD

Selfcare
  1. Get to know your cycle! Track all your symptoms and also any particular events and/or situations that may trigger or aggravate a specific symptom.
  2. Learn everything you can about PMDD. Read, enquire, ask. At some point, you will be the guru of your PMDD and you will know more about it than many doctors and specialists.
  3. Insert the word Self-compassion in your everyday vocabulary. Highlight it, put it in bold, save it on your fridge or the screensaver of your phone…in short, make it the most popular word of your vocabulary!
  4. Explore different Self-care activities. Do not be afraid to experiment, try different things until you find what works best for you.
  5. Peer support is essential.
  6. Change your lifestyle: eat a balanced diet, exercise regularly and SLEEP! Never underestimate the importance of a good night’s sleep. If it suits you, you can also consider yoga and/or meditation to help manage stress.

Common Questions About PMDD

What is PMDD caused by?

Unfortunately, the factors that cause PMDD are not currently known. It is known that individuals with PMDD have a greater sensitivity to the normal hormone fluctuations (oestrogen and progesterone) that occur during the luteal phase of the menstrual cycle. This sensitivity leads to alterations of the brain chemicals that control mood and sense of well-being.

There may also be a genetic component: some researchers at the National Institutes of Health (NIH) have found that women with PMDD have an altered gene complex that processes the body’s response to hormones and stressors. 

Other factors can also trigger and/or amplify PMDD symptoms:

  • unhealthy lifestyle (poor diet, lack of exercise, lack of sleep, stress, alcohol and caffeine abuse)
  • stressful or traumatic events.

What is the best treatment for PMDD?

Here comes the tricky bit: there isn’t a single line of treatments for PMDD. Different options work on some women and not on others. Sometimes you find relief from a combination of two or more of those recommended treatments.

The current treatment options are taken from the Guidelines on Premenstrual Syndrome developed in the UK by the National Association for Premenstrual Syndrome (NAPS). These provide different levels of treatment based on the severity of the disorder:

  • Lifestyle changes: regular exercise, healthy diet, yoga, meditation, etc.
  • Counselling and Psychotherapy
  • Vitamins and Supplements
  • Oral Contraceptives and Antidepressants (SSRI Selective Serotonin Reuptake Inhibitor)
  • Hormonal therapies: GnRH antagonists (Gonadotrophin Releasing Hormone) with hormone replacement therapy; surgery of hysterectomy and ovariectomy.

How do I cure my PMDD naturally?

Natural Remedies
  • Meditation
  • Yoga
  • Exercise
  • Aromatherapy: some essential oils (Clary Sage, Geranium, Lavender, Frankincense, Ylang Ylang) can relieve symptoms related to PMDD
  • Sleep. Yes, sleep!
  • Healthy diet
  • Natural herbs: Agnus Castus, Evening Primrose Oil, St. John’s wort
  • Supplements: Magnesium, Vitamin B Complex, Calcium, Vitamin D
  • Cognitive Behavioral Therapy (CBT)
  • Acupuncture.

PMS vs PMDD: What’s the difference?

Premenstrual Dysphoric Disorder is a severe form of Premenstrual Syndrome (PMS). You might have heard of the expression:

“PMDD is PMS on steroid”

I don’t think any further explanation is needed!

PMS and PMDD symptoms are quite similar, but their intensity and duration are very different. For people affected by PMS, physical symptoms are predominant, for PMDD sufferers the emotional and behavioural ones are instead the most debilitating. These are so serious to have a significant negative impact on social, family and working life, as well as interpersonal relationships.

The Last Thing You Need to Know about PMDD

In conclusion:

  • Get to know your cycle as much as you can
  • Be your own advocate and fight for your rights
  • Ask for help
  • There is no one-size-fits-all treatment: it’s a sort of trial and error until you find what works better for you
  • Explore the available resources
  • You are not alone!❤

If you’ve come this far, congratulations and thank you for your attention. I really hope this article has been helpful to you. You can bookmark it in your favourites if you wish and consult it as you need.

If you liked this article, leave me a comment below, I cannot wait to hear from you!


Sources

[1] ITA-PMS (Associazione Nazionale Sindrome Premestruale e Disturbo Disforico Premestruale) – https://itapms.org/.

[2] IAPMD (International Association for Premenstrual Disorders) – https://iapmd.org/about-pmdd/.

[3] DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) – Disponibile su Wikipedia https://en.wikipedia.org/wiki/Premenstrual_dysphoric_disorder#DSM-5.

[4] ICD-11 (International Classification of Diseases) – https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1526774088.

[5] Harvard Medical School, article “Premenstrual dysphoria disorder: It’s biology, not a behavior choice“.

[6] National Association for Premenstrual Syndrome (2018) Guidelines on Premenstrual Syndrome.

[7] Sindrome Premestruale: la voce delle donne, di ITA-PMS.


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