When Sandi MacDonald was a teenager, something was happening with her body that she couldn’t understand. She recalls feeling okay one moment, and the next, overcome with emotions that made her want to die.

Now at 45, she still suffers physical and crippling emotional symptoms in the week prior to her period. Anxiety, self-deprecating thoughts and suicide ideation engulf her.

But the moment she bleeds, the symptoms vanish, only to return three weeks later.

Sandi MacDonaldSandi MacDonald, wearing a “fight like a PMDD girl” sweater, co-founded the International Association of Premenstrual Disorders, a non-profit organization that reaches thousands of women with premenstrual disorders each year. Photo courtesy of Sandi MacDonald.

At 34 years, MacDonald finally was diagnosed with premenstrual dysphoric disorder (PMDD).

“I would describe PMDD as being trapped in your own mind of hell once a month,” says MacDonald, who lives outside of Halifax, N.S., calling it “a monthly hell.”

Premenstrual dysphoric disorder: What it is

PMDD is often described as “PMS from hell.”

According to MacDonald, PMDD is a cyclical, hormone-based mood disorder that affects an estimated three to eight per cent of women, transgender men, and non-binary individuals assigned female at birth of reproductive age.

The International Association of Premenstrual Disorders, however, say the number is higher and affects five to 10 per cent of women.

PMDD Statistics Edit 01While many people believe that PMDD is a hormone imbalance, it isn’t. According to Dr. Eisenlohr-Moul, PMDD is an abnormal brain response to normal hormone fluctuations. Graphic by Karina Zapata.

PMDD significantly affects the daily lives of those who are diagnosed and is directly connected to the menstrual cycle. Symptoms arrive seven to 10 days before menses and leave within three days after.

Symptoms include:
– Feelings of sadness or despair or even thoughts of suicide
– Feelings of tension or anxiety
– Panic attacks, mood swings, or frequent crying
– Lasting irritability or anger that affects other people
– Lack of interest in daily activities and relationships
– Trouble thinking or focusing
– Tiredness or low-energy
– Food cravings or binge eating
– Trouble sleeping
– Feeling out of control
– Bloating, breast tenderness, headaches and joint or muscle pain

According to a 2015 study, PMDD treatment includes antidepressants, SSRIs only when symptoms are onset, hormonal treatment and psychotherapy. As a last resort, some women with PMDD have their uterus and ovaries removed.

In 2013, PMDD was listed as the only premenstrual disorder in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) — the standardized diagnostic manual for mental disorders recognized by the American Psychiatric Association.

Because of its recent inclusion in DSM-5, PMDD has gained more recognition by medical professionals across the globe, listed as “a depressive disorder not otherwise specified.” This means it doesn’t fit the criteria of more common depressive disorders like major depressive disorder.

Diagnosing is difficult

Calgarian Michelle Mazerolle and MacDonald say a lack of awareness around PMDD in Canada played a large role in their difficulty getting diagnosed. Both women say the U.S., U.K. and Australia have better resources, like PMDD specialists and more research.

Michelle Mazerolle 1Michelle Mazerolle was diagnosed with PMDD at 31 years old after suffering with no diagnosis for 16 years. Her severe symptoms led her to go from full-time to part-time as a registered provisional psychologist. Photo courtesy of Michelle Mazerolle.

Mazerolle, 34, started experiencing PMDD symptoms when she was 15 years old. Already dealing with polycystic ovary syndrome and autoimmune reactions, she heard her doctors throw around words like congenital adrenal hyperplasia, lupus, rheumatoid arthritis and even brain tumour in their efforts to explain the symptoms she was experiencing.

It took 16 years to finally get a diagnosis. She was 31 years old.

“In order to get a diagnosis of PMDD, I had to rule out many, many other illnesses or disorders,” says Mazerolle.

Before MacDonald was diagnosed with PMDD, she was misdiagnosed with bipolar disorder, something common among women with PMDD, according to medical studies. The symptoms of PMDD are similar to the symptoms of bipolar disorder and borderline personality disorder.

PMDD Bipolar InfographicSandi MacDonald, like many other women, was misdiagnosed with bipolar disorder before she was diagnosed with PMDD. She describes PMDD as being allergic to her own hormones. Graphic by Karina Zapata.

After taking bipolar medication that didn’t work, MacDonald knew she didn’t have bipolar disorder. Like Mazerolle, she went to her doctor fully armed with information on PMDD.

She says it’s almost like she diagnosed herself. She ultimately just needed someone to agree with her that she wasn’t bipolar.

“You start to feel like you’re crazy or something,” says MacDonald. “You start to feel like nobody’s listening and you almost start to believe that you are crazy after a while because nobody listens.”

Now, both women plan their lives around PMDD. Due to the severity of her symptoms, Mazerolle had to stop working full-time as a registered provisional psychologist so she could take days to focus only on recovering and managing her pain.

She even planned her entire wedding around the disorder.

“I planned a year in advance, and low and behold, life has a way of throwing a wrench in plans and my period changed. So I had my period during my wedding,” says Mazerolle, still recovering from the toll it took on her body by wearing brand new penguin-printed pajamas — her favourite form of self-care.

Similarly, MacDonald works closely with other women suffering from PMDD, but adds that when she is experiencing symptoms, she sometimes takes days off to take care of herself.

“There have been times, absolutely, that I’ve either hung up or finished typing and then sat there and cried,” says MacDonald.

Advocates reaching thousands of sufferers

In 2013, MacDonald and Amanda LaFleur, founded the International Association of Premenstrual Disorders (IAPMD), a global non-profit association for women suffering with premenstrual disorders. They wanted to create a resource that advocates for women who share similar experiences with them.

MacDonald runs IAPMD’s peer support program, where she works seven days a week to support women across the world who are suffering. She says in the last year, over 1,000 women globally have participated in peer support and over 6,000 women attended support groups. Over 10,000 have visited the website.

All women on the peer support team who still suffer from PMDD schedule work around their menstrual cycles to ensure their safety as well as their clients’ safety.

An overarching theme in the conversations from peer support, especially during crisis calls, is suicide ideation.

“It’s not their fault,” says MacDonald. “Their bodies are doing this to them. Their hormones are doing this to them. It’s like their hormones are convincing them to feel like they should die.”

According to IAPMD, an estimated 15 per cent of women with PMDD die or attempt to die by suicide. However, MacDonald says that the number might be much higher.

“We were guesstimating in our meeting last week that over 50 per cent of women with PMDD have suicidal ideations,” she says, referring to Dr. Tory Eisenlohr-Moul, chair of IAPMD’s clinical advisory board.

PMDD SuicideAccording to IAPMD, the suicide risk rate of women with PMDD is staggering — and researchers think it’s higher. Gia Allemand, an American tv personality, died by suicide in 2013. She was living with PMDD. Graphic by Karina Zapata.

MacDonald is the only Canadian on the board of directors at IAPMD and has tried to do work on PMDD within Canada but received little response from universities and clinicians. She says Canada struggles to recognize the disorder because Canadians don’t know what category it fits into.

“Is it a gynecological issue? Is it an endocrinologist issue? Is it a mental illness? I don’t think as a country, we know where in the hell we fit.”

Instead, she is focusing on making PMDD recognized and understood throughout the world in hopes that Canada will eventually chip in to the conversation.

PMDD researchers gaining traction

Tory Eisenlohr-Moul, a clinical psychologist and associate professor of psychiatry at the University of Illinois at Chicago, has been working on PMDD research for seven years. She also works closely with clients whose emotions and behaviours change with their menstrual cycle.

Though many women struggle to consider PMDD a mental disorder, Eisenlohr-Moul says the disorder is simply an abnormal brain response to normal hormone fluctuations, thus making it a brain disorder.

“[During ovulation] the egg gets released and the shell that the egg came out of, called the corpus luteum, pumps out a bunch of hormones. People with PMDD are really sensitive to those surges in hormones,” explains Eisenlohr-Moul.

The clinical psychologist developed and published the first and only standardized protocol for diagnosing PMDD and its similar counterpart, premenstrual exacerbation (PME), for research labs. It’s called the Carolina Premenstrual Assessment Scoring System.

It focuses on daily ratings of mood — something Eisenlohr-Moul repeatedly stresses the importance of. To be diagnosed with PMDD with the scoring system, you work with the computer program to rate your symptoms everyday for two months.

Using daily ratings allow researchers to see three things:
– Symptoms that are present all the time
– Symptoms that are moderate all the time and worsen during your period (PME)
– Symptoms that are severe seven to 10 days before your period and disappear within three days of the onset of menses (PMDD)

Currently, the Carolina Premenstrual Assessment Scoring System is mainly being used by researchers, though doctors are allegedly slowly starting to use it more frequently.

However, Eisenlohr-Moul thinks it won’t be used across the board by doctors, especially physicians, until it is available in an app form, which she is currently working on.

From PMDD sufferers to PMDD survivors

MacDonald says that PMDD sufferers in Canada deserve the same resources as women across the globe and that movement will have to start with medical professionals.

“General practitioners, psychologists, psychiatrists, OB/GYNs, endocrinologists,” begins MacDonald. “Nobody is listening here and we need people to listen.”

But Mazerolle says it isn’t just medical professionals that need more education — sufferers also do.

“Many of us are left in the dark, so you might get a diagnosis and not know where to go from there,” says Mazerolle. “I really hope that moving forward with this education and this awareness, women who suffer from PMDD can live a better life.”

Editors note: The PMDD fast facts infographic was updated with current facts. The photo caption for Michelle Mazerolle was changed from 31-years-old to 31 years old. 

Editor: Alexandra Nicholson | anicholson@cjournal.ca 

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