Seeing red Premenstrual dysphoric disorder’s roller-coaster of rage and depression is often left to careen off the rails due to missed diagnosis, stereotyping and lack of straightforward treatments, severely impacting mental health and relationships Silenced Symptoms
By: Jen Zoratti Posted: 6:00 AM CDT Monday, Mar. 18, 2024 Last Modified: 9:25 AM CDT Monday, Mar. 18, 2024 Updates

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This article was published 18/03/2024 (538 days ago), so information in it may no longer be current.

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In the weeks before getting her period, Tara Tetrault used to feel blinding, white-hot rage.

“Like, I ripped a dart board off our basement wall one day,” she says. “And that is not normal, or acceptable, or OK.”

Her 30s were punctuated by bouts of depression that seemed to follow a pattern, getting better, then getting worse, then getting better, then getting worse. After years of mental-health struggles, Tetrault, now 45, saw a nurse practitioner who began connecting some dots for her.

“I had gotten to the end of my rope,” Tetrault says. “I was sleeping almost two weeks out of the month, where I would have massive suicidal ideations and almost homicidal ideations — very vivid, wild-ass fantasies. And really, really, really bad mood swings.”

Tetrault was assessed by a psychologist, who diagnosed her with premenstrual dysphoric disorder.

“I didn’t know what that was. And when she explained it to me, all these lightning bolts went off in my head. I was like, oh my god, this is exactly what I’m going through.”

Premenstrual dysphoric disorder, or PMDD, is a cyclical, hormone-based mood disorder, with symptoms appearing during the luteal, or premenstrual phase of the menstrual cycle and abating within a few days of menstruation.

While PMDD shares some symptoms with the more common (and well-known) premenstrual syndrome, or PMS — including bloating, changes in appetite, fatigue and irritability — PMDD is much more severe, and the defining feature of the disorder is its outsized effect on mood.

“With PMDD, the severity of the symptoms is the hallmark differentiating point,” says Dr. Carrie Lionberg, a clinical psychologist at the Women’s Hospital at Health Sciences Centre.

“And the focus on the emotional or affective aspects of those symptoms, and the behavioural components, the impact on daily functioning, relationship functioning — all of those things are really what separates PMDD from the more generic PMS.”

And it’s the behavioural and emotional symptoms that send most women to their health-care providers seeking help, Lionberg says.

During a menstrual cycle, estrogen and progesterone levels rise and fall. Levels of serotonin, a brain chemical that regulates mood, also change throughout the cycle.

People with PMDD have an intensely negative reaction to these hormone fluctuations. Tumultuous mood swings, increased sensitivity to rejection, feeling overwhelmed, anger, depression, anxiety, feeling “on edge” and, in severe cases, suicidal ideation are all symptoms of PMDD.

In 2013, PMDD was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders 5 (or the DSM-5).

When Janine, 41, came off the antidepressants she was using to manage postpartum depression after the birth of her second child, she began noticing her moods right before she got her period. (Janine does not want her last name used owing to the nature of her job.)

“I was certainly not myself,” she says. “At the time, it was more just being extra emotional, a lot of anxiety, sort of snapping at my kids and my husband.

“Then it started getting worse. I started noticing that I couldn’t even control myself at work anymore. If somebody upset me, I was very quick to snap.

“And then on the day I got my period, I would wake up and I just felt, OK, it’s over. I’m me, I’m healthy. I’m a great mom again.”

Years ago, Lionberg was working with a research group, and a term that stood out to her that captured many women’s experiences with PMDD is “irrational irritability” — a hard-to-pinpoint, out-of-nowhere sense of agitation that leads to overreactions to things that might not ordinarily bother a person, like a dish left in the sink.

This is one reason PMDD can be hard on interpersonal relationships; those overreactions can lead to even more distress for the person struggling with PMDD.

“Oftentimes the person will feel guilty about having overreacted and then that contributes to some of the depressogenic thoughts that occur,” Lionberg says. “You know, ‘I can’t handle things, I can’t cope with this,’ ‘It’s going to be a horrible two weeks’ — those types of thoughts create even more severe depression and anxiety.”

But sometimes, Janine’s thoughts scared her.

“I started having thoughts of, I don’t want to say suicide, but how easy it would be if I was to just get into a car accident,” she says. “And I would just go to sleep and death felt calming, like I didn’t have to feel this way anymore. But it was irrational. Because once my period came, I’d be like, Oh my God, what an awful thought.

“But then, by the next month, here it comes again.”

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There can be several barriers to obtaining a PMDD diagnosis.

Many women may have their symptoms chalked up to garden-variety PMS which, Lionberg notes, affects 30 to 70 per cent of menstruating women. PMDD, meanwhile, affects around 5.5 per cent, according to the International Association For Premenstrual Disorders. (The association offers a self-screening quiz on its website.)

“Sometimes, when something is as common as that, as health-care providers, we may dismiss the importance of what the patient may be saying without doing further investigation into the impact that has on their daily functioning,” Lionberg says.

If you’re noticing these distressing symptoms, it’s definitely worth having a conversation with someone, says Dr. Omolayo Famuyide, medical director and founder of the Layo Centre, a women’s health clinic in Winnipeg.

“And if you’re not feeling heard, go somewhere else,” she says. “Ask for a referral.”

There is no blood or saliva test to determine if a patient has PMDD. It is not caused by a hormone imbalance, but rather a hormone sensitivity. Diagnosis, then, involves tracking symptoms every day over the course of several menstrual cycles to determine that the symptoms are, first, cyclical and second, consistent with PMDD.

“Which is onerous, especially when people are very busy, and they can’t take the time,” Lionberg acknowledges.

“But we want to see if somebody’s tracking, say, for a four-month period that maybe at least for two months out of that four-month period we’re going to see some significant symptoms that relate to the cycle changes of menstruation.”

Symptoms can also fluctuate month to month owing to a variety of factors, including stress or major life events, so definite patterns leading to diagnosis may be difficult to pinpoint.

For Jenn Allen, 32, PMDD symptoms were occurring against the backdrop of a pair of previous mental-health diagnoses: ADHD and complex post-traumatic stress disorder (C-PTSD). She was already seeing a clinical psychologist who had her doing mood tracking; through that, he was able to figure out she had PMDD as well.

It was a lightbulb moment for Allen. “Oh my god, this is happening once a month where my mood gets so bad that I want to literally drive off a bridge,” she says.

Allen was familiar with PMDD — “I think I would attribute that to, for better or worse, mental-health content on Instagram” — but couldn’t recognize it in her own cycle, owing to the fact she has a more complicated mental-health baseline.

“As part of my PTSD, I always have some sort of underlying suicidal ideation. But with PMDD, in the week leading up to my period, that goes from passive suicidal ideation to active, to the point that last month, I was literally like, ‘I’m gonna write a note.’” (She has a good support system in place, composed of people who understand how PMDD affects her thoughts and mood.)

Because of PMDD’s cyclicity, it’s far more likely to affect people who have a regular period.

“A lot of patients who have irregular cycles — and we’re talking diagnostic gynecological conditions; PCOS (polycystic ovary syndrome) comes to mind — we actually tend to not see as much PMDD in that category because they often have anovulatory cycles; they’re not ovulating regularly,” Famuyide explains.

PMDD symptoms intensify during “that classic luteal phase which is triggered by ovulation.”

Tetrault comes from “a long line of healthy bleeders.” She had her first daughter at 22 and her second at 24. Both were rough pregnancies. Suffering from anemia from heavy bleeding, at 26 she underwent an endometrial ablation, which stopped her regular bleeding but not her other premenstrual symptoms — which made pinning her symptoms to her cycle difficult.

“I never really associated any of my mental-health symptoms with my period because I didn’t get my period,” she says.

Cultural attitudes towards menstruation — and stereotypes about women on their periods — may also be a barrier to getting a diagnosis. The whole concept of PMS has become a pop-culture punchline, and is often used to downplay women’s experiences.

“How many times have we heard, ‘Oh, it’s just PMS’ or ‘It’s just that time of the month?’” Famuyide says.

“This stereotype still exists of women as raging, unpredictable hormonal creatures, and that can be a barrier to a woman seeking help, because she doesn’t want to be labeled as a raging, hormonal, mad woman,” Lionberg says. “By the same token, a diagnostic label can be very helpful, because it sets somebody on the path of getting the proper kind of help that they need.”

It can also be empowering.

“I think, especially as women, we just default to, ‘Something’s fundamentally wrong with me on an individual level,’” Allen says. “So having that language and an explanation for some of the things that are happening to you is really powerful and important.”

Like Allen and Tetrault, Janine felt relief upon getting a diagnosis. “It was almost exciting, hopeful,” she says. “But then that sort of changes once you realize that there’s very little research out there, nobody can really help you. There’s not a magic cure.”

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While there is no cure for PMDD, it can be treated and managed, usually via a combination of psychological and pharmacological treatments, Lionberg says.

“I think we’ve come a long way in terms of how we manage patients,” Famuyide says. “We’ve really good data for things like CBT (cognitive behavioural therapy). But it comes down to access for a lot of patients. It’s not a publicly funded, universally accessible service, unfortunately.”

In addition to psychological therapy, addressing lifestyle factors, such as exercise and nutrition, as well as how big a role alcohol and caffeine play in one’s life can also help ease symptoms, as can developing relaxation strategies, problem-solving skills and healthy coping mechanisms.

Antidepressants, such as selective serotonin reuptake inhibitors (SSRIs) or serotonin/norepinephrine reuptake inhibitors (SNRIs), are considered a first-line treatment for this disorder.

“Practically, I think for most patients it’s probably easier to take it daily,” Famuyide says. “I find sometimes in the PMDD population, because it’s a cyclical condition, the idea of having to take an antidepressant daily can be a tough struggle for some patients. So, alternatively, you could dosage during the luteal phase, which is those 14 days after ovulation.”

Combined birth control pills, which contain estrogen and progestin (the synthetic form of progesterone), are also considered a first-line treatment. They can help regulate those hormone fluctuations, Famuyide says, and can be taken alongside an SSRI.

“I’m honestly kind of just winging it because there are so few options, right? I just try to remind myself why I’m feeling the way that I’m feeling.”– Jenn Allen

Finding relief takes some trial and error, however. The two types of birth control Janine tried made her symptoms worse. Her psychiatrist suggested a stronger dose of her antidepressant, which she’s been on since November.

“And it’s helping,” she says, noting she no longer has to take time off work to deal with her symptoms. “I noticed there’s still some breakthrough during those premenstrual times, some of those old feelings, the anxiety, a little bit of tears now and then, but I can manage…

“But it’s still not a cure, and it feels like it’s only a matter of time before (the PMDD) is stronger than the medication.”

Allen also had intolerable side effects from the birth control pill and is already on an SSRI.

“I’m honestly kind of just winging it because there are so few options, right?” she says. “I just try to remind myself why I’m feeling the way that I’m feeling. But then, the mind plays tricks on you. When I’m in the thick of what I call my PMDD haze, I’m just like, ‘You can’t reach me, I’m not good to connect with. I don’t want to be around people.’ I isolate.”

Allen also tries to make herself do normal activities that, when she’s not in her PMDD haze, fill her cup — like roller derby. (Her derby name is Lexi Pro: “Shout-out to my Lexapro, keeping me stable.”)

Another treatment for severe PMDD is gonadotropin-releasing hormone analogs, such as Lupron, which puts patients into chemical menopause.

The psychologist who first assessed Tetrault recommended a radical hysterectomy, which she was unsure about at the age of 42, so she went back to her nurse practitioner for a second opinion. A specialist put her on Lupron and told her she’d know right away if it was helping.

“And she was not kidding,” Tetrault says. “It was like, within the next cycle. Life happens and things annoy you. But I didn’t want to kill myself and I didn’t want to take the rest of those f—rs with me. It was life-changing.”

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Many people still don’t know what PMDD is, or how it differs from PMS. While awareness campaigns can help with visibility — April is PMDD awareness month, for example — Famuyide says having more open conversations about it makes a big difference.

That’s something she’s noticed with respect to menopause: women talking more openly about their experiences which, in turn, allows other women to advocate for themselves.

“I think women having those coffee-talk conversations will actually probably drive things in a bigger way than going to see your doctor,” Famuyide says.

Allen wishes more people understood how severe PMDD is, and how debilitating it can be.

“There is that relief once my period is done and I have my seven to 10 good days a month,” she says. “But a lot of that time is spent picking up the pieces that went awry when I was in the thick of PMDD.”

All three women living with PMDD interviewed for this piece expressed gratitude for friends and loved ones who support them during those tough weeks — “I have a fantastic and wonderful partner who educated himself and literally picked me up off the floor so many times,” Tetrault says — but they recognize not everyone has a support system, either personally or medically.

Tetrault would like to see improved access to medications such as Lupron, which are costly.

“I’m very fortunate to have great benefits, but that’s a $1,200 shot,” she says. “Someone who is marginalized, living in poverty — I pay $253 every three months and sometimes it’s just not a choice for some women.”

More discussions and awareness around PMDD — and women’s health more broadly — are certainly helpful, Lionberg says, but awareness only goes so far if it’s not buttressed with resources.

“Part of the problem is, we need to have health-care providers who are available to provide help to women who do come forward and say, ‘I recognize that I’m missing work, my relationships are affected by this, my relationships and my patience with my children at home are affected by these changes in my menstrual cycle, and I need some help for that.’ Where are they going to go for help?” Lionberg says. “Would these individuals seeking help go to a generic depression service? Yes, they probably would, it won’t focus specifically on PMDD but more generally, and that can be helpful — but there’s huge waitlists for that as well.

“We can raise awareness of some of the mental-health issues that people are experiencing, but if we don’t have appropriate resources to meet those needs, what are we really doing except frustrating people?”

jen.zoratti@winnipegfreepress.com