PMDD: Living with a hormone-based mood disorder

A 2009 study by the Harvard Review of Psychiatry found that 90% of PMDD sufferers are thought to be undiagnosed, underlining that hundreds of thousands of women are out there suffering alone. But what is PMDD?

According to Gia Allemand Foundation, Premenstrual Dysphoric Disorder is a cyclical, hormone-based mood disorder with symptoms arising during the luteal phase (which can last between 10 and 16 days) of the menstrual cycle and lasting until the onset of menstrual flow.’

Despite the disorder being related to the menstrual cycle, it has often been considered to be genetic rather than hormonal, with symptoms worsening over time (if not managed). PMDD affects 1 in 20 women, yet the condition is not currently known to be covered in GP, gynae or psychiatric training, meaning that many women are being treated improperly for their symptoms. To uncover more information, Moody spoke with Laura Murphy, co-founder of Vicious Cycle: Making PMDD Visible, a grassroots project raising the standards of care for PMDD sufferers. Murphy also serves on the Board of Directors for the Gia Allemand Foundation.

What is commonly known about PMDD?

Commonly? Nothing. I have only ever met one GP that’s ever heard of it and it is rare to meet someone that’s heard of it before.  In 2016, researchers at the National Institutes of Health (NIH) found that women with PMDD are more sensitive to the effects of sex hormones estrogen and progesterone, due to a molecular mechanism in their genes. Researchers compared white blood cells in women with PMDD and those without, which confirmed that it impacts a woman’s cellular response to sex hormones. There are still so many misconceptions and lack of knowledge and awareness out there, even in HCP and sufferers. We still hear of women having blood tests done and being sent on their way as ‘fine’ as they do not have a hormonal imbalance. Culturally, PMDD has been previously pretty much written off as women being ‘difficult, dramatic or hysterical’.

What are the physical and behavioural symptoms?

Symptoms can include depression, tension, anxiety, lasting irritability or anger (that affects other people), panic attacks, mood swings, or frequent crying, trouble thinking or focusing, feelings of sadness or despair or even thoughts of suicide.  Other symptoms can include trouble sleeping (too much or too little), lack of interest in daily activities and relationships, feeling out of control, tiredness, fatigue and noise sensitivity.

I asked the UK PMDD support group to list their symptoms and between us we came up with seven pages worth! Some of the issues include brain fog, memory issues, clumsiness, reduction in cognitive function, brain zaps and changes in eyesight, while physical symptoms can include bloating, breast tenderness, headaches, joint or muscle pain, but not all sufferers have physical symptoms.

How is PMDD diagnosed?

There is currently no blood or saliva test to diagnose PMDD although these tests can rule out other underlying disorders. The only way to diagnose PMDD is by tracking symptoms for at least two menstrual cycles. Even with this information many people find that their doctor has no knowledge of PMDD, so getting a diagnosis is not an easy path for many.

What treatment is available?

Sadly there is no one treatment that works for all. Most medications are used off licence and as such, there is a lack of regularity and information for sufferers. First line treatments can be prescribed at GP level but then it usually requires a referral to Gynae or a specialist. Many gynaecologists have never heard of PMDD as it is not included in their training.

There are treatment guidelines in the UK, which can be freely accessed online. Lifestyle changes and supplements are the first recommended step.

Are there any supplements or holistic remedies that can help with PMDD? What food and drink should be avoided?

Lifestyle changes are the first line of defence in helping to minimise symptoms of PMDD. Sufferers should improve their nutrition and practice exercise regularly. Getting plenty of sleep and exercise while eating a diet rich in proteins, complex carbohydrates, fruits and vegetables are the foundation of any treatment plan. Reducing salt, sugar and caffeine are also important starting points. Small starchy meals are recommended also. While keeping to a healthy diet and getting enough exercise can be a challenge during the luteal phase, reducing stress and getting enough sleep can be vital in surviving a cycle. We are also seeing lots of success with CBD oil in the groups too but it is all anecdotal.

How can PMDD affect an individual, their relationships, and their work?

Think of PMS. Then imagine PMS as an atomic bomb. BOOM. That’s PMDD. It wipes you out.

With PMS you may snap and get cranky, with PMDD you may fly into a rage and say things you don’t really mean, and destroy or damage relationships with loved ones.

With PMS you may feel tired, with PMDD you may not be even able to keep your eyes open or lift your head from the pillow.

With PMS you may feel down, with PMDD you may feel like your family is better off without you and start thinking about suicide.

With PMS you may get a bit forgetful, with PMDD maybe you cannot think straight, remember words, focus or concentrate at all.

With PMS you may get annoyed at your partner, with PMDD you may decide that you simply never loved them and they don’t care about you (as you may feel numb) and decided it’s best if you break up.

With PMS you may feel a bit anxious, with PMDD you may feel so anxious you need to use a sedative or you are unable to leave the house or be around people.

All of these symptoms have a knock on effect on relationships, day to day life and work, many are unable to work or function for a week (or two) every month.

Can PMDD be cured?

The only full ‘cure’ for PMDD is a total hysterectomy with bilateral oophorectomy, thus removing the menstrual cycle and cause of fluctuations. That said, many manage their symptoms and keep them at a manageable level and surgery is seen as the last resort when all other treatments have failed. It is very much the end of the road option and all other options should be tried first. There is no one size fits all treatment and everyone picks their own path - some choose the holistic route, other wants to use pharmaceuticals - all journeys are OK.

When it comes to figuring out if one has PMDD, what signals should women pay attention to? What should they do if they suspect they have it?

Look out for 'off the charts PMS'. If your mood is up and down then tracking it to see if there is any correlation to your menstrual cycle. If you are exploding and having big disagreements with family or partners and this is out of character, track it. If you have suicidal thoughts, track it.

Tracking is key when it comes to PMD, not only so you have data to show HCP but so you have something to look back on when you feel you are ‘losing it’ and realise you have felt like this before and gotten through it. Me v PMDD is a handy app. I also used Woman Log for many years.

Where can one go to get more information about PMDD? Are there any resources you'd recommend?

Gia Allemand Foundation is the go to place for info. They also offer free one-to-one support to anyone in the world affected by PMDD. I would recommend joining some online support groups, they have helped me immensely in my dark days and have educated me immensely in my good days! Just pop ‘PMDD Support’ in the Facebook search bar and try some groups to see which ones suit you and your outlook. In the UK there are also RCOG green-top guidelines and NAPS UK treatment guidelines, both of which can be found online and are free to download.

Find out more about your body's signals

Written by: Sara Radin