Over 200,000 women in the UK have PMDD - but what is the period disorder?

PMDD, or premenstrual dysphoric disorder, is not just your average bout of PMS. And while many people are still unaware, celebrities including Zara Larsson and TikToker Dixie D'Amelio opening up about their experience of the period disorder.

And now, a new study has shown just how prevalent PMDD is in the UK.

A team at the University of Oxford looked at global data to estimate the proportion of women and girls who suffer from the disorder.

The study, published in the Journal of Affective Disorders, found that 1.6 per cent of women of childbearing age have PMDD — which translates to 235,000 people in the UK.

Dr Thomas Reilly, the study's lead order, has expressed concern that the NHS may be failing women who have PMDD, due to the fairly little-known nature of the disorder.

"There is very little training around PMDD for psychiatrists, or indeed medical students. In terms of clinical services, patients often find themselves falling between gaps (eg, between gynaecology and mental health services)," he explained. "Whether a patient’s GP has knowledge about PMDD is very variable. In psychiatry, we rarely consider whether a patient’s symptoms might relate to hormonal changes. We need better awareness and training about this condition for health professionals."

Thankfully, famous faces are sharing their own experiences of the disorder; Vicky Pattison has bravely shared her own diagnosis.

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"I have struggled with my periods my whole adult life- but over the last 5 years or so my PMS symptoms have been completely out of control- it has affected my relationships, my work & my quality of life," the reality star, 35, wrote on Instagram, accompanying a series of raw images of herself.

"At times, it made me feel like I was going insane- I just do not recognise myself for 2weeks of the month & ever so gradually- that time frame is becoming longer- & sometimes."

After feeling dismissed or "pacified" by doctors for years, she realised she could no longer go on feeling "lost" half of the month despite being in a happy relationship, surrounded by great friends and family, and doing a job she loves.

Pattison explained, "This week I decided enough was enough and went private & told myself I wouldn't be dismissed. When the doctor said to me 'it sounds like you have PMDD..' I cried. I cried because I felt f**king heard in a medical setting for the first time in years and also I cried because hopefully now I can start trying to manage this rather than just 'get on with it'- like I feel like women are expected to.

"For the first time in ages.. I feel more positive."

Receiving support from fans and celebrities alike, Dr Alex commented, "Sending love to you ❤️ you are AWESOME. Remember that x", while Ashley James wrote, "Love you for this. I'm so sorry you had to go private to be listened to. I had a similar experience with my vaginismus diagnosis . You'll be helping so many people by sharing and I'm sending you love xx."

Over on her stories, Pattison explained that she personally struggles most with insomnia, extreme fatigue/exhaustion, depression, lack of interest in things that usually bring her joy, poor impulse control, sensitivity, mood swings, extreme hopelessness, and dark thoughts.

So, what do we know about PMDD?

What is PMDD?

Cramps, mood swings, tiredness, bloating, and spotty skin are all common symptoms of PMS, which affects women in the weeks running up to their period.

While, for example, it can feel like armageddon in your lower belly at the time, standard PMS can often be solved by taking painkillers and indulging in some self care without any major inconvenience. PMDD is not so simple, however. For sufferers, while symptoms are similar, they are much more severe, and can be so intense they start to impact on your daily activities and quality of life, according to the NHS.

"The most distressing and common symptoms include: mood swings, depression, irritability, symptoms of aggression and loss of self-confidence," Dr Nick Panay, consultant gynaecologist and chairman of the National Association for Premenstrual Syndrome, told Cosmopolitan UK.

You may think these symptoms sound familiar, but women with PMDD have them much worse than most – to the extent that in extreme cases, some women may even feel suicidal.

Sophie Claus, who has blogged about living with PMDD since her diagnosis in 2016, previously said the hardest thing about having the condition is lack of understanding.

"It's so easily passed off as 'time of the month'," she said. "The lack of awareness means there are so many inconsistencies in the way women are treated, many being investigated for mental health disorders initially, thus delaying the correct treatment.

"I have worked out that throughout 2014, 2015 and 2016 [when she was eventually diagnosed] my family, friends and work lost me for at least 12 weeks each year. That's 12 weeks each year where the world would just stop for me, where I would just shut down, I wouldn't talk, eat, go to work or see my friends."

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When she first tried to get help for her symptoms, Sophie was referred to a mental health team and incorrectly diagnosed with delayed PTSD.

"The realisation hit me after speaking to my female friends about how I felt – none of them seemed to be experiencing the extremities and symptoms that I was, nor did any of them feel relief when their period started, they felt quite the opposite," she previously explained.

"I remember sitting on the floor, with my mood diary and work absence logs spread-out, and I just sat there joining all the dots together. When I eventually read about severe PMS/PMDD, I sobbed. It wasn't just me, I wasn't going insane and no longer did I feel so alone.

"My advice to anyone who thinks they might have PMDD is to track your symptoms," Sophie added. "I recorded my symptoms, dates I was ovulating, dates I began to feel awful and the date and time I started to feel better, as well as the date my period started. Then speak to your GP – I asked to see one with an understanding of premenstrual disorders."

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"Ideally, PMS is diagnosed through a symptom diary although often, when we first see patients, we initially have to rely on retrospective recall," said Dr Panay.

"If women keep a symptom diary it will clearly show the fluctuations in symptoms through the months. There may be background symptoms throughout the month, but the key factor is whether there is a worsening of symptoms premenstrually. Although the first stop should be primary care (your GP), referral to a specialist PMS clinic may be required."

The exact causes of PMDD are unknown but it has been linked to sensitivity to changes in hormones or certain differences in genes you can inherit from your parents, according to the NHS.

While more and more studies try and understand why some women are vulnerable to PMS and others aren't, in the meantime (other than seeking help from your doctor as the first port of call) it could be worth joining a (trusted) group specifically tailored for women with PMDD. "I found these invaluable," said Sophie. "Speaking to other women who are going through the same thing is such a huge support."

There is plenty of help out there.

You can contact the National Association for Premenstrual Syndrome (NAPS) on 0844 8157311, find support groups online such as the UK PMDD Support, or use symptom trackers like Me V PMDD.

If you need urgent advice for PMDD you can call a GP and ask for an emergency appointment, call 111 out of hours (they will help you find the support and help you need), call a helpline, such as the Samaritans (call free on 116 123).

This article is not intended to be a substitute for professional medical advice or diagnosis. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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