Women who experience premenstrual dysphoric disorder – a condition many degrees more severe than the more common PMS – face misunderstanding, misdiagnosis and restrictions on the lives they can lead. By Lindy Alexander.

Premenstrual dysphoric disorder

PMDD sufferer Lynda Pickett.
PMDD sufferer Lynda Pickett.
Credit: Supplied

Like many first-time mothers, Lynda Pickett felt exhausted. But the migraines, irritability, agitation, fatigue and uncontrollable crying she had been experiencing deeply unsettled her. “I thought I was going crazy,” she says. “I couldn’t understand why I was having these intense physical and psychological symptoms. I wondered if I wasn’t coping as a new mother.”

Pickett went to her GP and explained that she didn’t feel like her usual self. She had never experienced rage, conflict with her partner or panic attacks before. Something had shifted since she weaned her son and her period had returned. She was told to get sleep, exercise and eat well. “Another month went by and my symptoms returned,” she says. “I told my GP, ‘This is serious – these symptoms are overwhelming and I need help.’ ”

Her doctor ordered blood tests, but the results came back within the normal range. “I broke down and burst into tears,” Pickett says. “My GP asked why I was crying and I told her it was because I was hoping the tests would show that what I was experiencing had a hormonal link.”

Pickett’s doctor reached for a medical book. She stopped at a particular page, took out a piece of paper, copied something down and handed it to her desperate patient. “That was my light-bulb moment,” Pickett says. “Reading the description, I knew that I had PMDD.”

Premenstrual dysphoric disorder, known as PMDD, is the name given to a set of distressing emotional and behavioural symptoms that some women experience premenstrually. It’s estimated that 3 to 8 per cent of women, or those assigned female at birth, experience PMDD. The disorder, which is included in the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), is very different from the better-known and milder premenstrual syndrome (PMS).

A diagnosis of PMDD requires at least five of 11 symptoms that are severe premenstrually and subside post-menstrually. The symptoms are depressed mood, anxiety/tension, mood swings, irritability/marked anger, decreased interest, difficulty concentrating, fatigue, sleep difficulties, appetite changes, feeling out of control and physical symptoms. The cause of PMDD is largely unknown, but experts believe that ovarian function – rather than hormone imbalance – is the cyclical trigger.

Researchers have recently found a link between a particular gene complex and PMDD. Women with PMDD appear to have an intrinsic difference in how their cells respond to oestrogen and progesterone compared with those without it. “While PMDD is not caused by one single thing, the research does indicate a genetic vulnerability in women who have PMDD,” says Associate Professor John Eden, a gynaecologist and reproductive endocrinologist at the Women’s Health and Research Institute of Australia.

PMDD and major depressive disorders share similar characteristics, and Eden has seen confused diagnoses. “I’ve seen patients over the years where they’ve been labelled as bipolar,” he says. “But their psychological symptoms are linked to their menstrual cycle. Most of my patients track their symptoms through an app and can clearly show their symptoms come and go depending on where they are in their menstrual cycle.”

Being misdiagnosed is an experience commonly reported by those with PMDD and, according to Eden, it is one of the areas of women’s health that often falls between the cracks. “Women talk about their experiences to their mothers or friends and because they haven’t had the same symptoms, the women tend to get dismissed,” he says. “And many GPs, psychologists, psychiatrists and neurologists aren’t aware of the condition. Often, the implication is that for those with PMDD, their experiences are all in their head.”

It took Zoe Sandhurst – not her real name – more than 10 years of searching before she received a diagnosis of PMDD. “I was misdiagnosed with generalised anxiety disorder,” she says, “despite the fact that I kept saying to my psychologist and doctor that my anxiety only occurred premenstrually.”

Sandhurst’s symptoms were like clockwork. Ten days before she menstruated she would wake early in the morning in a hyper-agitated state. “I’d have trouble concentrating, get confused and then I would start getting anxious,” she says. “Over the next 10 days I’d get less sleep and start feeling very sad. I’d have feelings of worthlessness and then, a couple of days before my period, I would have suicidal ideation.”

Even though Sandhurst would eventually be able to recognise her thoughts and behaviours as linked to her cycle, she was exhausted from her experiences. “Those feelings are very real and difficult to cope with on a regular basis. It’s a relentless condition and if you’re not receiving any treatment, 10 days in every month are going to be incredibly difficult.”

Sandhurst’s PMDD permeated all parts of her life. She would reduce socialising when she was experiencing the symptoms. “Any time anyone asked me to do something I would check my calendar before I’d commit,” she says. “I’d block out 10 days every month for when I had symptoms.” And at the end of each month, she would feel both glad for the respite but also apprehensive. “There’s a huge sense of relief that you’ve made it through another cycle and you’re okay. But there’s also dread because you know it’s going to happen again.”

In a few months, 37-year-old Heather Warden will travel to England to see her family. While she’s excited about seeing her relatives, she is not particularly looking forward to the flight. “I’ll be travelling at the time in my cycle when I’m going to be having full-blown PMDD,” she says. “But my family help me get through this chronic illness so I wouldn’t think about not going.”

Warden experiences 10 out of the 11 possible symptoms of PMDD. “For two weeks every month I’m fine,” she says. “But then for the next two weeks I’m in the depths of despair. I’m on the floor depressed and paranoid.” Her nursing background has given her some insight into possible treatments and therapies, but she says she is exasperated by the lack of knowledge medical professionals have about the disorder. “I have an ongoing chronic condition, but so many people think it’s just me being hysterical. I feel so frustrated that I have to do my own research and then educate the medical professionals that I’m paying to see.”

John Eden says there is an implication that women’s PMDD symptoms are psychosomatic. “Too often these women aren’t believed,” he says. “Menstruation is a taboo subject in mainstream Australian culture, but the truth is that PMDD is real and no woman should have to put up with it.”

Some women come into Eden’s Sydney office in a state of despair having looked for a remedy for many years. “They may have had four or five different opinions and often their opening line to me is, ‘I want it [uterus, fallopian tubes and ovaries] all out,’ ” he says. “It’s a sign of how desperate they are.” However, a hysterectomy and oophorectomy – ovary removal – is a last resort and Eden tends to start with clinically proven natural remedies. “Premular tablets contain an extract of the chaste tree and they have been found to effectively reduce PMS symptoms,” he says. Eden also notes that there’s strong evidence for the use of vitamin B6 and “softer evidence” for the use of calcium and magnesium. He frequently recommends stress-reduction techniques such as meditation and counselling.

Beyond natural therapies, women can also benefit from newer contraceptive pills, such as Yaz, or antidepressants including selective serotonin reuptake inhibitors (SSRIs).

“There’s some good evidences that SSRIs such as Prozac work better for PMDD than they do for depression,” Eden says. “This can be life-changing for women who have severe symptoms.” 

Prozac didn’t work for Zoe Sandhurst, but she is now on a low-dose prescription for a different antidepressant. “I take antidepressants continuously throughout my cycle,” she says. “I didn’t want to go on them but I was desperate and, like many women with PMDD, my symptoms were getting worse every year.” Sandhurst’s PMDD had been so severe that she restricted travel plans. “I was really living month to month and I found that over the years I started to reduce long-term plans, like travelling internationally. Life was becoming untenable and I could see my world was getting smaller and smaller.”

Sandhurst also started taking the contraceptive pill Yaz three cycles ago and has been impressed with the results. “My PMDD is now more like PMS,” she says. “I’m thinking about going overseas again, so that’s pretty incredible for me. It’s opened up that option again.”

This article was first published in the print edition of The Saturday Paper on November 3, 2018 as "Cycle of affliction".

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Lindy Alexander is a freelance writer and researcher.

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