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A Beginner's Guide to Premenstrual Dysphoric Disorder


So if you are reading, I guess you may have heard about PMDD (premenstrual dysphoric disorder) and you might think you or someone you know is living with it. (Did you know it affects one in 20?)

PMDD is often described as “PMS on steroids” — though that doesn’t really cut it for me. In my opinion, it is far, far worse. In fact, it is often misdiagnosed as rapid-cycling bipolar disorder in many women and AFAB (assigned female at birth) individuals. 

My name is Laura and I spent 17 years undiagnosed with PMDD — going through periods of depression, anxiety and panic attacks, plus awful PMS that made me want to run away every month (I can live in my car right?!). 

I run Vicious Cycle: Making PMDD Visible, a patient led-awareness campaign with a team of other passionate people around the globe. I used to run the UK PMDD support group on Facebook, and every day I used see people joining the group confused, lost and not sure where to start, so I thought I would give you a beginner’s guide! 

I struggled with PMDD for about 21 years in total. My first crash was at 17 years old when I went on the pill for heavy periods. On the 22nd day of taking the pill (the first sugar pill) I crashed and burnt — I had major panic attacks and slumped into a deep depression. I believe taking the pill acted as a “hormonal interruption’”which triggered my PMDD. For the next 17 years I struggled with depression, panic attacks and severe PMS — with the latter getting worse with age. In my 30s it was just getting more and more chronic and I was losing nearly half a month at times. For me, the depression, anxiety, lack of focus, brain fog, crying fits, fatigue and a feeling of bereavement were the worst symptoms, but many also experience uncontrollable rage, anger and irritability. I found out about PMDD via Dr. Google (!) and as PMDD is a relatively new diagnosis, it can be hard to find a doctor who is knowledgeable in treating it — but never fear! There is help out there!

In 2015, I finally got referred to an amazing doctor in London. Sadly two years down the line, my PMDD proved treatment resistant and in October 2017 I had a full hysterectomy with bilateral oophorectomy (all out!) and am now in surgical menopause. 

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. An estimated 5.5% of women and AFAB individuals (that’s one in 20! Woah!) meet the criteria for PMDD. PMDD may be borderline or mild, moderate or severe. PMDD is the only form of premenstrual disorder currently classified in the DSM-V.

It’s worth noting that above are the diagnostic criteria, but patient’s report many, many other symptoms and it can vary from person to person.  

First things first — what is PMDD? Basically, your brain cannot handle the fluctuations that happen in the luteal phase and has a severe negative reaction to them. It is thought to be a genetic malfunction causing a sensitivity to the normal fluctuations between ovulation and around the time of your period.

Tips:

Learn all you can. Many doctors have never heard of PMDD as it is still a relatively new diagnosis (it was added to the DSM-5 in 2013), so you have to learn all you can to self-advocate. Sucky, huh? But that’s where we are for now! There are treatment guidelines and so much information on the IAPMD (The International Association For Premenstrual Disorders) website. Print, read, highlight and learn.

Track your symptoms. I cannot stress how important this is. It is the only way to get a diagnosis plus it can help save your sanity when you look at it and figure out why you are feeling the way you are. (E.g. want to rip someone’s face off, eat a whole loaf of bread and are weeing like a race horse? Oh I must be ovulating! Just me?) For a diagnosis you need a minimum of two months tracking. It is important to track every day so a professional can make the correct diagnosis. You can get tracking tools here.

Don’t be fobbed off if your blood tests come back “normal.” With PMDD, hormone levels are normally within normal range and so won’t be picked up on in blood tests. PMDD is your brain having a negative reaction to the fluctuations, not the hormone levels themselves. That said, blood tests are important to rule out conditions like hormonal imbalance or thyroid issues which can mimic PMDD symptoms. 

Peer support is key. For me, peer support was an utter blessing. To be able to talk to people who “get it” without explanation was just such a relief. I learned so much from groups and from the people who came before me. They passed down so much knowledge and I am so grateful for that. There are loads of support groups on Facebook, a non-social media PMDD community on Inspire and IAPMD offer free one-to-one support through their peer support team so if you have any questions, need a friendly, understanding ear or need links to resources you can check in with them. (They are lovely. Honest.)

There is no one-size-fits-all treatment. Whilst the world’s first PMDD specific treatment is in clinical trials (yay!) there is sadly no one treatment that works for everyone. While some find that lifestyle changes are enough, for others first line treatments such as SSRIs and/or hormonal birth control can help. If these first line treatments have been exhausted, then there are other things to try (hormone therapy, chemical menopause, etc. and at the end of the line: hysterectomy with ovary removal, but that tends to be a “if all else has failed” kinda deal).

What helps one is hell for another so don’t feel bad if someone else’s solution is not yours. Also — do not be fobbed off. Learn your facts and stand up for yourself. If you do not feel able to do that, then take a trusted friend or partner with you to appointments.

Knowledge is power! Do not give up just because you come across doctors who don’t understand. You know it’s real and I believe you’re suffering. I (and plenty of others!) know it is real.

PMDD can be a very lonely experience. It can be easy to think you are the only one struggling with it, but let me tell you that there is a massive PMDD community online. On Instagram and Twitter you can connect with others by searching the #PMDDpeeps and #1in20PMDD hashtags.

It can be difficult to navigate the medical system so peer support and shared experiences are just a vital point of the learning curve!

There are so many of us together online, all at different stages of the journey. If you need help, reach out and people will be there to help you. You are never alone.

Resources:

International Association for Premenstrual Disorders:

Vicious Cycle: Making PMDD Visible:

Photo by Egor Barmin on Unsplash