Speaking out on the impact PMDD has on people

Emma Cardall just turned 40 but says she feels like her life stopped since her diagnosis of premenstrual dysphoric disorder.

She said the disorder made her life an "absolute nightmare".

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Ms Cardall is just one of many people crying out for more awareness about this debilitating disorder, not just in society but also with general practitioners.

"Women have always been seen as hysterical and their pain not being taken seriously," she said.

"It's the same with mental distress not being taken seriously. We tend to have to go through society dampening it down and putting on a strong face, when it should be taken seriously."

GP Dr Rose Tilsley from Family Planning Tasmania said PMDD is like a "more severe" form of PMS.

"The distinction is when your premenstrual symptoms start to impact your ability to function in your daily life significantly, then that would be called PMDD," she said.

PMDD affects about three to eight per cent of people with PMS.

People who have PMDD face the complex hurdle of not just a mental health disorder but a physical body disorder which affects them for half of their monthly cycle.

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"The symptoms that people get can be emotional or physical," Dr Tilsley said.

"A common thing that people might notice physically are bloating and swelling. Another really common one would be breast tenderness, often to the point where people don't want to play sports or hug people.

"Then emotional things quite similar to depression or anxiety: irritability, low mood, sadness, teary-ness, and hopelessness.

"As to why it happens like it happens in some people, but not others, we don't know."

Ms Cardall, who advocates for PMDD awareness via an international support group called Luna Hub, said she had one person tell her a GP dismissed their concerns telling them "it was normal for a person to feel suicidal before their period".

Ms Cardall had struggled with suicidal ideation and severe insomnia with her PMDD and still wasn't taken seriously.

She is now on serotonin and norepinephrine reuptake inhibitors and hormone replacement treatments to help her function again after 12 years.

"I always had the more severe end of PMDD. Getting treatments that work for me after over a decade of struggling, I'm now finally able now to work through how difficult the last 10 years have been," she said.

Ms Cardall said PMDD is like a "freight train" and refers to PMDD as a disability.

"Nothing stops it once it starts," she said.

"It affects your entire life, your work, especially your relationships and you're out for half the month and trying to reel it back for the rest of it. It's disabling.

"It's been like living two lives and trying to keep it hidden because nobody can say anything or do anything to support me."

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It was so severe at one stage, Ms Cardall was considering surgical menopause.

Dr Tilsley explained how hormones in the monthly cycle impact brain chemistry.

"We know that all women, when they're ovulating, have essentially the same hormone changes that happen in the same levels," she said.

"But when people make progesterone in the second half of their cycle after they ovulate, in some women, that progesterone interferes with the way that their brain chemistry functions, particularly affecting things like serotonin, which is more commonly understood for its role in depression.

"For half your cycle, people are essentially having changes in their brain chemistry caused by their hormones."

Dr Tilsley said the limited awareness of PMDD might be due to women blaming themselves for not being able to cope with their periods and keeping their struggles to themselves.

"It might be that women's health maybe hasn't received as much attention or awareness as it should," she said.

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The best way to get a handle on severe cycles is to track them, advised Dr Tilsley.

"It can usually be diagnosed based on your history alone, and people can keep a really good diary of their symptoms, which is easier these days with all the apps that people use to track their cycles," she said.

"It's quite obvious to diagnose if you can see that cyclical pattern that happens very routinely."

Ms Cardall said not taking PMDD seriously and not having awareness is life threatening.

"The Global Survey of PMDs 2018 found that 30 per cent of responders with PMDD had attempted suicide," she said.

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