How premenstrual dysphoric disorder makes life hell for thousands of women like Ava

Hopeless, frightened and debilitated is how Ava Wilson describes her mental health in the lead-up to her period every month. 

But her experience is not typical premenstrual syndrome (PMS).

She's one of millions living with an overlooked chronic condition called premenstrual dysphoric disorder, or PMDD.

"It occurs usually between 10 to 14 days before my period starts," Ava said.

"I just begin to shut down."

The condition looks different for everyone, and symptoms can include extreme mood changes, depression and anxiety. 

There are also physical symptoms like tiredness, insomnia and bloating.

In severe cases it can lead to suicidal ideation.

PMDD is believed to be caused by a sensitivity to hormonal changes during a menstrual cycle.

A global study has found 1.6 per cent of women of reproductive age have been diagnosed, but because the criteria is strict, the study predicted the actual prevalence is much higher.

Flick of the switch

Ava experiences symptoms of deep depression and disassociation like clockwork every month.

The all-encompassing dark cloud of PMDD will then clear as quickly as it forms.

"It's immediate after ovulation for me personally — I can feel the flick-of-the switch moment, and usually as soon as I start bleeding, it goes away, which is one of the craziest things to experience," she said.

Ava said when she's caught in the cycle of the condition, relief is often followed by anticipation.

"There are moments of living in fear," she said.

"In the moments leading up to it, when I am feeling really good, it's just this anxiety [knowing] that's not going to last."

The 21-year-old knew of PMDD because her mum also lives with it, but when she wanted to dig deeper online, she was met with limited research papers and scientific jargon.

She said the effort that goes into researching something that heavily impacts her life and relationships "almost feels unfair".

"I'm trying to understand myself and what's happening in my body, and it feels like I'm going in with a blindfold. It's just really scary," she said.

Lack of awareness

Endocrinologist Dr Rosie Worsley is trying to fill that knowledge gap by running a clinic with her sister, who's a psychiatrist, to treat people living with PMDD.

They're overrun with demand.

"It's just such an unmet need and there's not really a lot of services out there to help people," she said.

While there's no cure, treatments options are available, including anti-depressant medication and the contraceptive pill.

Dr Worsley said the challenge was typically finding a GP who knows about PMDD in the first case.

"When women are able to access care through their general practitioner, often they get really good outcomes and it's much more cost-effective," she said.

"It's not really something that's taught at medical school at all, it's not treated within the public hospital system … so it's something that can sometimes take a while to find someone who is familiar with the condition."

Opportunity for research

PMDD officially became a diagnosable disorder in 2013 when it was added to the Diagnostic and Statistical Manual of Mental Disorders.

Royal Australian College of GPs sexual health chair Sarah Whitburn said in the decade since, research has been limited.

"It's great that it's now a condition which means we can think about diagnostic tests, we can think about screening, we can start to think about it as its own entity," Dr Whitburn said.

"But that doesn't then translate into enough research."

It's up to GPs to expand on their education, which Dr Whitburn said is a process that needs to be supported but she's hopeful it will happen.

"It's the groundswell and the interest we've got at the moment into women's health that I hope would help support more research," she said.

Endemic sexism

So why is the education on PMDD so barren considering women have been menstruating since the dawn of time?

"I'm sure part of it is the endemic sexism that's been in medical research and medicine generally over the years," Dr Worsley said.

"But also, it's a very difficult condition to study and it overlaps with a lot of things, so it really isn't a straightforward area."

Ava said increasing the awareness of PMDD would help lift the burden of repeatedly having to explain her experience.

"To create a sense of safety just to feel this, I think that would tenfold improve the experience, being able to know that people know what it is," she said.

"If there was an education around our cycles from an early age, we wouldn't have to do as much of the digging ourselves."