PMDD, or premenstrual dysphoric disorder, is not your average bout of PMS. Cramps, mood swings, sore boobs, tiredness - around 90% of people with uteruses experience PMS to some extent, and there are more than 100 symptoms on record.

It can feel like armageddon in your lower belly at the time, but 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 of premenstrual dysphoric disorder, pre-period symptoms can become so severe that they start to impact every single area of their life.

"Up to one million women in the UK are affected with the most severe form of PMS, called premenstrual dysphoric disorder (PMDD)," Dr Nick Panay, consultant gynaecologist and chairman of the National Association for Premenstrual Syndrome, tells Cosmopolitan. "That's around 5-10% of the population.

"The most distressing and common symptoms include: mood swings, depression, irritability, symptoms of aggression and loss of self-confidence."

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 attempt suicide.

Just recently in the news, Great British Bake Off winner John Whaite appealed to help find his sister, Victoria Cunningham, who has gone missing in Portugal. As he explains in a video on Twitter, Victoria's diagnosis of PMDD (along with depression) means she may be a risk to herself.

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Please share - Victoria is still missing pic.twitter.com/a8cQWoR2ik — John Whaite (@John_Whaite) August 6, 2019

"She has been diagnosed by a consultant specialist in the field of female hormonal health as having PMDD, or premenstrual dysphoric disorder, which is a disorder whereby she will go pretty much insane during the week before and during the week of her period," John explains in the video.

"A result of these illnesses is that she sometimes goes on binges of drink and drugs, during which she will often show signs of self-harm and attempt suicide. She is vulnerable and at risk to herself."

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

"It's so easily passed off as 'time of the month'," she says. "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."

"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 adds. "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," Dr Nick agrees.

"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 cause of PMDD is currently unknown, but with so many women affected, researchers are working hard to find answers so that they can provide more tailored help.

"There is interesting work taking place at Harvard, in the USA, trying to unravel the genetics of why some women are vulnerable to PMS whereas others, with the same hormone changes, don't seem to suffer symptoms,"

says Nick.

"The work is looking at the way the oestrogen receptors are coded in PMDD, the most severe form of PMS. A recent breakthrough has led to the discovery of a PMDD gene and work is continuing to further characterise this and develop a diagnostic test."

In the meantime, Sophie suggests joining a group specifically tailored for women with PMDD.

"I found these invaluable," she says. "Speaking to other women who are going through the same thing is such a huge support."

Dr Nick Panay is a consultant gynaecologist and is chairman of the National Association for Premenstrual Syndrome.





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