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

Desperate, scared and debilitated is how Ava Wilson describes her mental health each month before her period.

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

She is one of millions of people living with a neglected chronic condition called premenstrual dysphoric disorder, or PMDD.

“This usually happens between 10 and 14 days before my period starts,” Ava explained.

“I’m just starting to stop.”

The illness is different for everyone and symptoms can include extreme mood changes, depression and anxiety.

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

In severe cases, this can lead to suicidal thoughts.

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

A global study found that 1.6 percent of women of childbearing age have been diagnosed, but because the criteria are strict, the study predicts the true prevalence is much higher.

Switch operation

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

The overall dark PMDD cloud will then dissipate as quickly as it forms.

“It’s immediately after ovulation for me personally – I can feel the moment the switch is flipped, and usually as soon as I start bleeding it goes away, which is one of the craziest things to experience,” she said.

Ava said that when caught in the cycle of illness, relief is often followed by anticipation.

“There are times when you live in fear,” she said.

“In the moments beforehand, when I’m feeling really good, it’s just this anxiety (of knowing) that’s not going to last.”

The 21-year-old knew about PMDD because her mother also lives with it, but when she wanted to research it further online, she encountered a limited number of research articles and scientific jargon.

She said the effort to pursue something that has a big impact on one’s life and relationships “almost seems unfair.”

“I’m trying to understand myself and what’s going on in my body, and I feel like I’m going in there with a blindfold on. It’s really scary,” she said.

Lack of awareness

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

They are overwhelmed by demand.

“It’s such an unmet need and there aren’t really a lot of services to help people,” she said.

Although there is no cure, treatment options are available, including antidepressants and birth control pills.

Dr Worsley said the challenge was usually finding a GP with knowledge of PMDD in the first case.

“When women can access care through their GP, they often have very good outcomes and it’s much more cost-effective,” she said.

“It’s not really something that’s taught in medical school, it’s not treated at all in the public hospital system… so it’s something that can sometimes take a while to find someone one who knows this disease.”

Search possibility

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

“It’s great that this is now a disease that means we can think about diagnostic testing, we can think about screening, we can start to think about it as its own entity,” Dr. Whitburn said.

“But that doesn’t translate into enough research.”

It is up to GPs to develop their training, which Dr Whitburn says is a process that needs to be supported, but she hopes it will happen.

“It’s the groundswell and interest we have right now in women’s health that I hope will help support more research,” she said.

Endemic sexism

So why is education about PMDD so barren given that women have been menstruating since the dawn of time?

“I’m sure part of it is the rampant sexism that has plagued medical research and medicine in general 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’s really not a simple area.”

Ava said increased awareness of PMDD would help ease the burden of having to repeatedly explain one’s experience.

“Creating a sense of security just by feeling that, I think that would enhance the experience tenfold, to be able to know that people know what it is,” she said.

“If there was education around our cycles from a young age, we wouldn’t have to dig so hard ourselves.”

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