'It's suffocating': What it's like to live with premenstrual dysphoric disorder

Before her diagnosis, Cassie Brown felt like she was living half a life.

Every month, two weeks before her period, the Saskatchewan woman became unrecognizable to herself and felt like another person – and had no idea why.

She was emotional, quick to anger, fatigued, extremely sensitive, hated how she looked, felt anxious and depressed – making it feel impossible to get out of bed or brush her teeth.

It caused her to lose a job and strained relationships in her life.

Her period would arrive and she would feel like herself again.

"You return and you have to face the destruction that 'she' [her unrecognizable self] has wrought and have to pick up the pieces," Brown said.

Catherine van Warmerdam describes feeling like she is in a bubble that is filled with black smoke once a month.

"You kind of can't really see outside of the bubble of darkness," the Port Hope, Ont. resident said. "And even if you try to reach through to somebody else or, you know, to make better choices, it just feels like you can't.

"It's suffocating. You can only have negative thoughts. There's so much self-doubt. You lose your self-esteem, you're fatigued, you're in pain, you're tired."

Both women have premenstrual dysphoric disorder (PMDD), a condition that affects five to 10 per cent of people who menstruate worldwide. April marks its awareness month.

PMDD is an abnormal brain response to hormone fluctuations during the reproductive cycle. 

Researchers at the National Institutes of Health found that those with PMDD had differences in the genes that process sex hormones.

Delayed diagnosis

Brown says that on average it takes 12 years to get a diagnosis due to a lack of awareness of the disorder, a statistic she herself experienced.

It wasn't until Brown was 30 years old that she was diagnosed with PMDD.

After her first period at 15, Brown noticed she was affected more by her menstrual cycle than her peers in Elrose, Sask. She tried speaking to doctors and family members about it.

"They're like, 'That's normal, that's what periods are like.' So I went undiagnosed until … my early 20s," Brown said, saying she was misdiagnosed with everything from endometriosis to pelvic inflammatory disorder.

"It took me 15 years to finally have a doctor mention that premenstrual dysphoric disorder was a thing and connect the dots and finally give me an accurate diagnosis."

She says she felt like she was crazy as test results came back normal, but she knew what she was experiencing was anything but normal.

Van Warmerdam spent most of her years in high school and university knowing that she struggled with symptoms including memory loss and anxiety in the days leading up to her period, but it wasn't until she was 21 that she decided to talk to a doctor about it.

Both says it is believed that some people living with PMDD might be misdiagnosed with other psychological conditions, such as manic depressive disorder or depression, which can be exacerbated by the hormones during a period known as PME (premenstrual exacerbation). 

With PMDD, symptoms only occur in the two weeks leading up to a period known as the luteal phase.

"So the only way to get diagnosed right now is to track your cycle for two cycles, and to track what you're experiencing, what your symptoms are and when they're happening," Brown said.

The symptoms vary but can include mood swings, irritability, depression, extreme fatigue, difficulty concentrating, insomnia and suicidal ideation. 

"It can actually be very debilitating," van Warmerdam said.

"It's hard to have a good sense of self when your sense of self is constantly changing. And you know when you might be really excited about a certain project at work or a partner or even just your own hobbies, it all falls apart every couple of weeks."

Thirty per cent of those living with PMDD will attempt suicide within their lifetime, according to the International Association for Premenstrual Disorders.

Jennifer Gordon, an associate professor of psychology at the University of Regina, says that to reach a diagnosis, five symptoms must be experienced during the luteal phase and there must be a 30-per-cent increase after ovulation. 

It should not be confused with premenstrual syndrome (PMS) and is much more severe.

The International Association of Premenstrual Disorders has a self assessment to help those track symptoms if they think they have PMDD.

"IAPMD is working on trying to improve education among health care providers," said Gordon, who is an IAPMD board member.

"Currently, like in medical schools for example, there is very little discussion about PMDD, which makes it hard because then you have physicians who don't know about it." 

Increasing awareness

Brown has made it her mission to spread awareness about PMDD so no one suffers without a diagnosis as she once did.

"Every single person I have ever talked to — be it someone in the general public, a family member or friend, other counsellors or a client who I do some psychoeducation with PMDD about — every single one of them says, 'I have never heard of this,'" Brown said.

Brown, a social worker and counsellor for an employee assistance program, has given presentations to educate other counsellors, and every April for PMDD Awareness Month she lobbies buildings in Regina to light up with the colour teal.

"I get really heated about it because I am passionate about it and I'm passionate about how there needs to be a better education from an early age — that your period should not ruin your life," said Brown.

Gordon says few people in her psychology program know about PMDD, and so she tries to remind her students how to recognize the disorder since it would need specific treatments. 

Lifestyle changes, gentle exercise such as yoga, psychotherapy and medication can all work as tools to help manage symptoms. In severe cases, those who experience PMDD might look at chemical or surgical menopause. 

Finding support

Brown calls her diagnosis a double-edged sword, a moment of relief and grief.

"You can no longer function the way that you used to and meet the expectations that you had for yourself because of your current reality and who you are now is so much different than the person you were when you were healthy," Brown said.

Because the disorder revolves around two taboo topics, menstruation and mental health, it can be hard to talk about, Brown says.  However, she has found others through online support groups, like van Warmerdam, who understand her experience.

"You learn to feel not so alone in what you're dealing with," van Warmerdam said.

"It's not just that you are unable to control yourself or you're a bad person, you learn that, you know, other people are dealing with this issue as well."