For two weeks every month Rachel* would be engulfed in a depression so deep she felt like she was “walking through treacle”. As a gifted athlete and high achiever academically, it was entirely out of character.
“Half the month I was extroverted, firing on all cylinders,” Rachel says. “Then I would hit ovulation. And at that time I became dysfunctional, shy and withdrawn. It’s like I woke up one day and became a completely different person. And from then until I started menstruating I became utterly dysfunctional. Then I would get my period and I would be fine. And this happened again and again and again.”
She says these symptoms – which doctors have now attributed to premenstrual dysphoric disorder, or PMDD – have affected intimate relationships and friendships over the years because she would withdraw socially if she felt the fog of depression closing in: “I couldn’t stand myself so how could anyone else?”
PMDD affects between 3% and 8% of women of reproductive age. It’s caused by fluctuations in hormone levels which affect brain chemistry and result in severe mood disturbances, says Prof Jayashri Kulkarni, a psychiatrist and director of the Monash Alfred psychiatry research centre at Monash University in Melbourne.
Unlike PMS, which hits two to four days out from menstruation with various physical and emotional symptoms, the onset of PMDD is one to two weeks before a woman gets her period, known as the luteal phase. It results in a sudden and significant depression and lifts just as abruptly when the woman’s period begins.
“This is a condition where there are significant depression symptoms, and that can include suicidal thoughts and suicide attempts, some of which are, tragically, realised,” says Kulkarni, who has been working in and researching the area of women’s mental health for almost 30 years.
“Some of the key features of PMDD are when a woman says, ‘It’s like someone flicked a switch. I’m OK, then suddenly, bang, there is a major depression. I can’t get out of bed, I can’t think. I get tearful, I get irritable, I get angry, I can’t process cognitively very well.’ ”
Kulkarni says PMDD symptoms, including anxiety, rage and hostility – all symptoms of depression although often not recognised as such – can wreak havoc on relationships. “All sorts of things can go astray, including work performances and relationships with colleagues,” she says.
Kulkarni has seen adolescents as young as 12 affected, all the way through to women nearing menopause, when the condition typically worsens.
Although women have been battling this condition for generations, PMDD has been recognised as a clinical mental health condition for only six years. In 2013 it was included as a depressive disorder in the Diagnostic and Statistical Manual of Mood Disorders, published by the American Psychiatric Association.
Significantly, a gene related to PMDD was found by researchers from the US National Institutes of Health and published in the journal Molecular Psychiatry in 2017. It points to a biological predisposition for those women who are extra sensitive to the normal hormonal fluctuations in their cycles. At the time the gene discovery was published, an NIH researcher, Dr David Goldman, said: “This is a big moment for women’s health because it establishes that women with PMDD have an intrinsic difference in their molecular apparatus for response to sex hormones – not just emotional behaviours they should be able to voluntarily control.”
It’s a pivotal time for women’s wellbeing in Australia. It’s a time when women’s health issues, like endometriosis, are finally being talked about and taken seriously – evidenced by the $10m federal government funding boost for endometriosis research and awareness announced earlier this year by the health minister, Greg Hunt.
Kulkarni is at pains to emphasise that PMDD is not just “below the belt” but a condition with its epicentre in the brain.
She says all the hormones involved in a woman’s cycle – progesterone, oestrogen and testosterone – are potent brain chemicals.
“Progesterone, and in particular allopregnanolone (a hormone produced when progesterone is broken down in the brain), is thought to be a major cause of PMDD,” she says. “But oestrogen ‘protects’ the brain in many ways, and imbalances in progesterone and oestrogen in the brain can lead to the depression symptoms seen in women with PMDD.
“These are all very potent hormones. And there are some women who are more sensitive to their hormone fluctuations than others.”
Rachel is one of those women. Her experience can be traced back to adolescence, but she was officially diagnosed only six years ago, in her early 30s, after years searching for an answer. A red flag for Rachel, as well as her depressive symptoms, was when her inner dialogue would suddenly nosedive into negative self-talk. “There would suddenly be a shift … an almost bullying way of talking to myself that wasn’t characteristic of me,” she says.
A PMDD diagnosis requires women to experience at least five symptoms in the final week before her period, which improve when menstruation starts and are minimal or absent in the remaining weeks of her cycle. These include mood swings, irritability, anger, anxiety, tension, fatigue, difficulty concentrating, social withdrawal and – as Rachel experienced – self-deprecating thoughts. There can be physical symptoms too, such as breast tenderness or swelling, joint or muscle pain, and a sensation of “bloating” or weight gain. Often women are asked to keep a diary to note the symptoms for several cycles before a diagnosis is reached.
Treatment can vary from practitioner to practitioner and from patient to patient – the same approach does not necessarily work for everyone. Kulkarni works closely with an endocrinologist and favours a multipronged approach involving hormone modulation – experimenting with doses of progesterone and oestrogen (including the contraceptive pill and oestrogen patches) – underpinned by psychological support. Low doses of antidepressant medication are added if needed but are not the first line of treatment. In the worst-case scenario, when women are not responding to any other treatments, inducing menopause with medication is an option.
“We have in the past had to resort to chemical menopause, at the very severe end, where somebody is profoundly depressed and their life is at risk,” she says. “That’s an extreme approach and very few people need it. It’s essentially shutting off those hormonal fluctuations. And we’ve had some great successes in women who have tried everything else and nothing has worked.”
Kulkarni says hysterectomies are not advocated by the clinic unless there is a very clear physical health reason beyond PMDD, such as additional complications with fibroids or severe endometriosis.
For Rachel the combination of psychological support, hormonal and anti-depressant treatment has allowed her to manage her condition, although it has taken time.
“The big thing I have noticed in the past six months in particular is that the fog has lifted,” she says. “There isn’t this cognitive fog, this sense of walking through treacle, which was the fatigue I had a lot of the time.”
She says she found it hard to confide in anyone about her condition, including female friends. In the past she would reach out if she was struggling but with PMDD, she feels there is still a stigma and a lack of language around how to talk to others about a women’s health condition.
“Even between other women, just saying, ‘My hormones at the moment mean that I don’t feel like myself.’ How do we talk about that?
“The thing that has really hit me with all this, is that mood isn’t just depression and anxiety. It sits so much within your hormones and broader health. That our experience of those things, as women, are so interrelated with our hormones – and we just don’t talk about it. It’s because it’s women’s health.”
Kulkarni agrees and says awareness needs to be raised nationally around women’s mental health: “The thing is, women’s mental health is not a national priority – and it should be.”
* Name has been changed
In Australia, the crisis support service Lifeline is 13 11 14. In the UK and Ireland, Samaritans can be contacted on 116 123 or emailjo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. Other international helplines can be found atwww.befrienders.org.
