The Saturday Paper

LINDY ALEXANDER

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, writes Lindy Alexander.

- LINDY ALEXANDER is a freelance writer and researcher.

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.”

 ??  ?? PMDD sufferer Lynda Pickett.
PMDD sufferer Lynda Pickett.
 ??  ??

Newspapers in English

Newspapers from Australia