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For a few days every month, Jo would feel a deep rage. It took her decades to be diagnosed.

Around the same time each month, Jo would feel it rearing up inside her. The depression. The exhaustion. The blind rage.

“I would become so angry that I would start a fight with my partner. Absolutely anything would set me off,” the 46-year-old told Mamamia‘s daily news podcast, The Quicky.

“I’d get rageful, so I would throw things… One point, which I feel completely shameful about, [I was] actually taking it out on my partner, physically. And that really scared me.”

It continued, month after month, for more than two decades, and ultimately cost Jo her 13-year marriage and a subsequent two-year relationship. Until she, finally, received a diagnosis: Premenstrual Dysphoria Disorder (or PMDD).

What is PMDD?

Added to the World Health Organisation’s list of diseases in May 2019, PMDD is a severe mood condition that occurs in the lead up to a period.

While its far-more-common cousin, PMS, will typically cause mild irritability, PMDD is so debilitating that it’s estimated 30 per cent of sufferers attempt suicide.

Jo certainly contemplated taking her life. Over the past five to ten years, she was hospitalised six times, as she struggled with suicidal thoughts and self-harm: “I think it was more just to escape the pain, you know”.

For Jo’s full story, listen to The Quicky.

Roughly eight per cent of women suffer from PMDD. Although, it’s believed the true figure is likely much higher.

Many women have their symptoms dismissed as bad PMS or are misdiagnosed as having bipolar disorder. In fact, in Australia, it takes an average of 12 years for a PMDD sufferer to receive the right diagnosis.

After all, there’s no test for PMDD. Instead, a clinician must rely on the type and timing of the patient’s symptoms.

What are the symptoms of PMDD, and what causes it?

Speaking to The Quicky, Dr. Andrea Chisholm, an obstetrics gynaecologist and former clinical instructor at Harvard Medical School, said that PMDD symptoms present only in the second half of the woman’s menstrual cycle — between ovulation and her next period — and will ease within a day or two once she begins to bleed.

“The predominant symptoms are of a mood component. So things like sadness and despair, tension and anxiety, significant mood swings, perhaps panic attacks and frequent crying. There can even be thoughts of suicide,” Dr. Chisholm said. “There’s often irritability and anger that can affect relationships, both personal and at work. You can feel very tired and low energy, you can have significant trouble sleeping, feel like you’re out of control, have trouble concentrating or staying focused.”

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Physical symptoms include bloating, breast tenderness, headache, muscle and joint pain. Again, these will occur in the second half of the cycle.

While the precise cause of PMDD isn’t yet known, Dr. Chisholm said research indicates that it’s to do with how a woman processes the normal cyclical hormones produced by her ovaries: estrogen and progesterone.

“We know these hormones are neuro-active, which means they can cross over into our brain. And in our brain, they interact with certain brain-chemical pathways; in particular, our serotonin system and our GABA system, which are really big players in our sense of mood and well-being,” she said.

“We’re starting to understand that, in women with PMDD, there’s likely to be a disruption or an alteration in how the brain processes these changing hormone levels.”

Can PMDD be treated?

The limited understanding of the disorder means that awareness among clinicians is somewhat limited, as are treatment options.

Clinical trials are currently underway of the first drug developed to specifically target the disorder. And if all goes to plan, it could be ready for use in 2024.

In the meantime, women like Jo typically rely on multidisciplinary care involving specialists and psychologists.

More than two decades on, she is finally undergoing effective treatment with the help of her endocrinologist, who prescribed drugs to place her into early menopause and end her periods.

After a month of treatment, the symptoms have eased.

“I just feel so hopeful, because there was no feeling of hopelessness or the depression that I’d usually get,” she said.

“I feel that other women out there absolutely need to know [about PMDD] because they may have well-being misdiagnosed. And I just don’t want other women to go through what I went through. I want them to be able to be in a relationship and understand what’s going on with them each and every month.”

If you are struggling with suicidal thoughts or self-harm, help is available. Please call Lifeline on 13 11 14.

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