So you’ve heard of PMS – but have you heard of PMDD?

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Written by Laura Murphy, Founder of Vicious Cycle: Making PMDD Visible project and on the Board of Directors at IAPMD.

PMDD (Premenstrual Dysphoric Disorder) is a condition that affects around 1 in 20 women and AFAB individuals but is less commonly known than it’s little sister, PMS. It occurs between around ovulation and around the onset of your period. If you are finding that your PMS is causing you to be very depressed, anxious, or perhaps even suicidal – you may want to look up PMDD.

“PMDD is a cyclical, hormone-based mood disorder with symptoms arising during the luteal phase of the menstrual cycle and lasting until the onset of menstrual flow. It affects an estimated 5-10% of women of reproductive age. While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance. PMDD is a severe negative reaction to the natural rise and fall of estrogen and progesterone. It is a suspected genetic disorder with symptoms often worsening over time and around reproductive events including menarche, ovulation, pregnancy, birth, miscarriage, and perimenopause”

https://iapmd.org/about-pmdd/

It is hard to describe PMDD to someone who has never been through it –  think PMS on steroids: PMS that makes you suicidal and unable to function – and there’s no ‘thinking yourself out of it ‘. Take any PMS symptom and multiply it to a point where it’s intolerable.  

Symptoms of PMDD

  • Feelings of sadness or despair or even thoughts of suicide
  • Feelings of tension or anxiety
  • Panic attacks, mood swings, or frequent crying
  • Lasting irritability or anger that affects other people
  • Lack of interest in daily activities and relationships
  • Trouble thinking or focusing
  • Tiredness or low-energy
  • Food cravings or binge eating
  • Trouble sleeping
  • Feeling out of control
  • Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain

These symptoms occur during a week or two before menstruation and go away within a few days after bleeding begins. A diagnosis of PMDD requires the presence of at least five of these symptoms

There is no one experience of PMDD – it varies in timescale, severity and symptoms for each person. Some people may be symptomatic for a few days a month, and for others it can be up to three weeks, but the commonality is that the symptoms occur around the luteal phase (leading up to your period) and then you have a symptom free period of time after your bleed.

How do you get a diagnosis?

There is no blood or saliva tests to diagnose PMDD – that said, your doc should do a full panel to rule out other conditions (such as thyroid problems!) that can mimic PMDD.

A diagnosis is made via symptom tracking. This can be done via an app such as www.mevpmdd.com or you can get a printable paper copy here: https://iapmd.org/steps-to-diagnosis/ Tracking will be especially important if you suffer from irregular periods due to PCOS as it can be harder to keep track.

What are the treatments?

First line treatments are lifestyle changes (such as stress reduction) and hormonal birth control and/or SSRIs. Sadly all treatments are trial and error and there is no one size fits all (yet!). You can read more about treatment options here: https://iapmd.org/treatment-options/

What is the worst aspect of this condition for you?

The rollercoaster. Getting to the end of a week of hell with it, the cloud lifting and then sobbing as you know very soon you’re going to have to go through it again. The again. And again.

Taking out the massive effect it has on your life, the lack of recognition from Health Professionals is something I have found really hard. To feel like you’re losing your mind, have suicidal thoughts, feeling terrified and out of control and then getting the guts up to go and speak to a GP and be dismissed is UTTERLY soul destroying. It terrifies me how many people are out there suffering alone and no GP’s are putting the connection to hormones. It’s something I feel passionate about and I really feel there is a need for GP’s to know about and understand the condition, which I why I started the Vicious Cycle: Making PMDD Visible project. We are a group of sufferers working to help other sufferers and make sure they get the help they need.

For more information on PMDD:

www.iapmd.org – The International Association for Premenstrual Disorders are THE place to head for information. They have a  website packed full of free resources and information. They also run a free one-to-one peer support service – so if you have questions or need a chat you can speak to someone who understands.

Vicious Cycle: Making PMDD Visible is a patient led PMDD awareness project. If you feel it is important to raise awareness of PMDD then come join us. Have questions or need signposting? We are on Instagram, Twitter and Facebook – and you can email us on hello@viciouscyclepmdd.com