How to recognize the symptoms and start treating this underdiagnosed area of ​​menstrual health

Premenstrual dysphoric disorder (PMDD) is thought to affect 5 to 8 percent of menstruating people, according to the National Premenstrual Syndrome Association.

And yet, it remains an under-researched and under-diagnosed area of ​​what may be under the umbrella of women’s health in general (although of course, it can affect anyone with a menstrual cycle).

Although it is thought that around three-quarters of menstruators will experience premenstrual syndrome (PMS) at some point in their lives, PMDD is a more severe – often debilitating – side effect of menstrual health that can affect individuals as long as two weeks during that period. the course of their cycle.

Here’s what you need to know – and what to do if you think you might have PMDD.

What is PMDD?

Let’s break it down word by word. First, on the most literal level, think about what dysphoria means. The grammatical opposite of euphoria (a feeling of intense happiness), dysphoria correlates with a sense of unease, unhappiness and dissatisfaction.

The “premenstrual” part should be pretty self-explanatory, and “disorder” in a health context means that the mind or body (or both, in this case) is not functioning in a “normal” way.

According to Ally McHugh and Emily Holloway, two therapists specializing in PMDD and co-founders of the activist group PMDD Collective, PMDD can be defined as “a cyclical neuroendocrine disorder, caused by sensitivity to normal hormone fluctuations throughout the menstrual cycle . “.

Symptoms usually start from ovulation (about 14 days before your next period in a typical 28-day cycle) and end within the first few days of menstruation.

That means for some people half of every month can be lost to PMDD.

What are the main properties?

As with any condition, symptoms vary depending on the individual. But because PMDD is closely linked to hormones, the symptoms often manifest physically and mentally.

I have had a historical relationship with PMDD. When I first talked to a doctor about it, I told them that “I couldn’t stop crying and eating and I felt suicidally depressed” every time my period was due.

As it turns out, that’s actually pretty typical. Common symptoms, confirmed by PMDD Collective, include sudden changes in mood, irritability, depression, insomnia, anxiety, rejection sensitivity, difficulties with focus and concentration (brain fog).

They can also cover migraines, cravings, nightmares and body dysmorphia.

As McHugh and Holloway would point out, “there are physical symptoms like fatigue and exhaustion, joint pain, chest tightness”.

“It has a huge impact – it can create interpersonal difficulties that can affect work, relationships and self-worth,” they said.

And perhaps the most frightening thing of all, up to 70 percent of people with PMDD have suicidal thoughts, and 34 percent have attempted it.

“In the UK, that equates to up to 630,000 people feeling suicidal every month. And that’s just people who have been diagnosed,” McHugh said.

What is the difference between PMDD and PMS or PMT?

Most people who have a period are au fait with PMS and premenstrual tension (PMT). Cramps, fatigue, cravings, irritability, breakouts and breakdowns are an integral part of owning an ovary. But if I know that is not easier to deal with.

The main difference is the severity of PMDD. If you are worried that your PMS or PMT is supposed to be a little worse than your friends, or if you identify with any of the symptoms listed above, it might be time to think about talking to professionals.

“To receive a diagnosis at least one of the main symptoms (mood swings, rage, anxiety and depression) must be present during the luteal phase (second half of the cycle), as well as four other symptoms, with includes brain fog, fatigue. , appetite changes, sleep disturbances, feeling overwhelmed and physical symptoms such as migraines or sore breasts,” explained McHugh.

If you can identify with any of the symptoms listed above, keep reading to find out what you should do next.

Why is PMDD so misunderstood in the medical field?

“Simple answer, the patriarchy!” said McHugh.

“It’s so often dismissed as ‘normal PMS’. It can also be diagnosed as rapid cycling bipolar disorder, due to its cyclical nature, but I believe it is missed because professionals don’t ask about menstruation and often don’t make that connection between mood and hormones”.

McHugh explains that until recently, PMDD was not included in medical training and was only included in diagnostic manuals in 2022.

“84 percent of our social media followers have been fired by a doctor because their blood tests came back ‘ok,'” she said.

“PMDD is a hormone-based cyclical mood disorder, it is not a hormone imbalance and will not show up on a blood test”.

With not much research to do, how have doctors treated PMDD?

In my case, I was advised to take anti-depressants – but for half a month.

“A lot of people are fired or given birth control as the answer to every gynecological issue,” McHugh said.

“With PMDD the wrong birth control can make things worse – and doing anything just makes it seem like a character flaw or an overreaction”.

But the PMDD Collective, along with a number of other organizations and professionals focused on the topic, hope to change that.

“Our main objectives are to raise awareness and create change. For example, looking at how we are educating children on the menstrual cycle,” said McHugh.

“Menstrual health has always focused heavily on fertility. Historically, sex education has been entirely about ovulation and menstruation, neglecting to teach all four stages of the menstrual cycle and the important role they play.

“If people are not educated about their own bodies, they cannot advocate for themselves”.

It’s amazing that the organization just ran its first awareness training for 100 UK-based doctors.

“We hope to continue to enhance our training for clinicians, educators and healthcare professionals as well”.

And if someone reading this article thinks they might identify with the symptoms of PMDD, what should they do?

“Organizations like ours are primarily about well-being. We run a monthly support group, our inbox is always open and we create informative content on our social media channels,” said McHugh.

It still takes an average of 12 years to be diagnosed with PMDD, saving people the support they may need.

“The first step is to track your bike,” says McHugh. “Tracking physical, mental and emotional symptoms will give you insight into your cycle and help you learn about all your physical and emotional changes throughout the month.

“Then, if you’re looking for a diagnosis, take at least three months of data tracking to your GP.

“They may want to explore first-line treatments with you, such as the birth control pill or SSRI antidepressants.

“At this stage we would recommend that a referral be sought to a specialist gynecologist with an awareness of PMDD. They can explore further treatment options, including chemical and surgical menopause”.

And, crucially, McHugh says, “I would also recommend reaching out for support, whether that’s from friends or family or our online community.

“PMDD can be an isolating condition. It is very powerful to have support and to know that you are not alone”.

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