Why People Living With PMDD Are Going Undiagnosed

Every person with a period experiences menstruation differently.

For some of us it can mean a day spent in bed with cramps. For others it might mean an onset of unexplained tears or for others it might mean actually not getting periods anymore from having an IUD.

For people with premenstrual dysphoric disorder or PMDD menstruation is unfortunately paired with a serious health condition that can be debilitating and at times life-threatening — something that most of us weren’t taught at a young age or at school.

For Leah, when she tells people about her PMDD, it’s not taken seriously because of the “massive misunderstanding about how serious the diagnosis is for a lot of women.”

“The way that you are feeling is not nothing to be embarrassed about. It’s nothing to be ashamed of and it is warranted as well.”

What Is PMDD And What Are The Symptoms?

As many as three in four women get PMS — premenstrual syndrome — at some point in their life, compared to the roughly 10 to 12% of women of reproductive age who experience PMDD.

To be clear, PMDD is not PMS. It is a much more serious version of PMS and triggers severe physical and behavioural symptoms in the lead up to menstruation. The National Institutes of Health found that women with PMDD have an altered gene complex that processes the body’s response to hormones and stressors.

Professor Jayashri Kulkarni, the Head of the Psychiatry Department at Monash University, called PMDD a brain condition and actually doesn’t agree with it being called a dysphoric disorder. Instead she called it a premenstrual major depression. She described the symptoms of PMDD to look out or is a rapid onset of depression where you are “fine one day [then] bang bedridden, can’t get out of bed.”

Brain fog is also a common symptom, according to Professor Kulkarni, which she described as people with PMDD genuinely forgetting what they are supposed to be doing next. Also the tears — the crashing, incapacitating, debilitating tears — and depression.

“I notice that my whole mental health can just plummet but it’s not until after my period or when I start to bleed that I realise oh, okay. You feel so out of control of your whole mind and your whole body, and that can last for like two or three or sometimes four weeks,” Leah told Junkee.

Why Are Women Being Diagnosed So Late?

PMS has always been linked back to the stereotype of people’s behaviour becoming irrational or hysterical with the onset of a period. For people experiencing PMDD, there’s naturally self-doubt over whether their symptoms are made up or caused by other mental health issues, which prolongs seeking a formal diagnosis.

For Leah, it wasn’t until she started seeing information online about PMDD that she realised that it might be something that she actually had herself, and it was Melbourne-based sexologist Chantelle Otten Instagram’s post about living PMDD that sparked Leah to seek a diagnosis.

Lack Of Recognition and Treatment

It was only in 2019 when the World Health Organisation gave PMDD its own medical diagnosis. But even then, the criteria for diagnosis is a long process.

As Professor Kulkarni put it, that lack of recognition leads to a hesitancy of diagnosis which then leads to people with periods having a delay in diagnosis, or even not receiving the diagnosis and being told they have something else instead.

Sadly there is no one PMDD treatment that fixes all and different contraceptive pills or antidepressants are expensive. Using hormones as a first line treatment is being tested but, unbelievably, experts don’t have enough funding to undergo proper clinical trials at the moment.

“I’ve heard too many sad stories of young women in their twenties who have had a total hysterectomy and a total oophorectomy — like removal of uterus, ovaries, everything — in the hope that if they don’t have those reproductive organs, then the PMDD will get better,” Professor Kulkarni said.

“Fertility is a woman’s choice and she should control it but sometimes she’s been given the wrong advice that if you rip out these organs then the PMDD will go. No, PMDD is a brain condition.

We have a lot of work to do to convince the mental health clinical population to educate women and to educate the primary health sector, because they’re gonna be the people who will be, I think, the mainstay of treatment here, so that they can easily recognise and validate the woman’s experience.”