‘I shouldn’t be feeling suicidal every month’: Searching for answers for women with premenstrual dysphoric disorder

For women living with premenstrual dysphoric disorder (PMDD), every month is a fight for survival.

For two weeks at a time, Abbie Hentges says she feels like a completely different person. “I go through a stage every month where I literally can’t look after myself. It’s almost like I’m this little girl in this world that’s just way too big and complicated for me.”

The 46-year-old from Victoria, B.C., who lives with severe PMDD, was not diagnosed until last year despite experiencing symptoms since she was a teenager.

I was living with it, too. At first, I worried I was going crazy. The nine-to-11 days of brain fog, mood swings, paranoia, intrusive thoughts, apathy, anxiety and insomnia, coupled with acne and aching pain which worsened up until my period, led me to Google: Why does my premenstrual syndrome (PMS) make me suicidal?

To my surprise and relief, the internet had an answer, one that did not say I was crazy, overdramatic or confused. Of approximately 138,000 results, the second one informed me of a condition for which I would not officially receive a diagnosis for another two years.

And I am the lucky one. Unpublished data from the International Association of Premenstrual Disorders (IAPMD) Global Survey states that it takes an average of 12 years to receive an accurate PMDD diagnosis even though it says 5.5 per cent of those of reproductive age globally suffer from it.

As defined by the IAPMD, PMDD is a “cyclical, hormone-based mood disorder with symptoms arising during the premenstrual, or luteal phase of the menstrual cycle and subsiding within a few days of menstruation.” Arising from a severe reaction to the body’s natural fluctuation of hormones throughout the menstrual cycle, PMDD is theorized to be a hormone sensitivity disorder in the brain.

Unlike PMS, which describes the common phenomenon of physical and emotional symptoms experienced by 75 per cent of women the week before menstruation, PMDD is characterized by debilitating symptoms that occur up to two weeks before menstruation. PMDD is not “just PMS.” Even simplifying PMDD as severe PMS is misleading because 34 per cent of women diagnosed with PMDD have attempted suicide.

As with most conditions, PMDD can vary in severity from person to person; however, a PMDD diagnosis must meet the criteria outlined in the DSM-5.

PMDD is not a hormonal imbalance given that it occurs from a severe reaction to the fluctuation of hormones in the menstrual cycle. For many women, PMDD goes away during pregnancy, as was in the case of Natasha Coulis, who began to experience symptoms in her teens that remitted over the eight years she was pregnant or nursing her four children.

The World Health Organization includes PMDD in the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11) as a disease of the genitourinary system.

“Individuals with PMDD are more sensitive to rises in estrogen and progesterone,” writes Jennifer Gordon, the clinical advisory board chair of the IAPMD and the director of the Women’s Mental Health Research Unit at the University of Regina..

“Researchers have confirmed this by administering estrogen and progesterone to people with and without PMDD and comparing the effects of the hormones on mood,” finding that “estrogen and progesterone administration triggers PMDD symptoms in those with PMDD but has no effect on mood in individuals without a diagnosis of PMDD.”

Not only is mood affected, but “people with PMDD show different activation patterns in emotion centres of the brain in response to the administration of estrogen and progesterone.” These placebo-controlled, double-blind studies “help us to confirm that PMDD symptoms don’t simply result from participant expectations or beliefs about menstruation.”

Every month, approximately 31 million women worldwide experience a cruel and involuntary metamorphosis of the mind and body. Yet, much like “female hysteria” used to be a medical diagnosis, the misconceptions surrounding women’s health remain.

To complicate the diagnostic process, no test confirms PMDD, so in conjunction with tracking symptoms for at least two months, possible alternative diagnoses must be ruled out. “I think it took me at least five doctors to find one doctor that would listen,” says Joyce, who preferred not to use her last name to protect her privacy. Despite knowing something was not right since the age of 12, it took her until 2019 to realize “I shouldn’t be feeling suicidal every month.”

Alana Brookes first developed symptoms in her 20s but was not diagnosed until the age of 40. She had already been diagnosed with endometriosis – having experienced symptoms since she started menstruating at 11 – but “it wasn’t until my husband went into my specialist appointment when I was finally referred to a gynecologist.”

However, PMDD has been associated with other conditions, including bipolar disorder, panic disorder, ADHD and autism spectrum disorder.

For some women, a PMDD diagnosis only comes after a crisis, like Hentges, where “it took a complete mental and physical health breakdown and ending up in urgent care and just being like, please, please help me.” From there she got a psychological assessment and an official diagnosis. “I knew I had PMDD. [At the] same time I cried when I read the report, and it was kind of like when I got the diagnosis for my chronic fatigue … because I was misdiagnosed for so long.”

Hentges has chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS), which she describes as being “characterized by post-exertional malaise.” Before her PMDD diagnosis, she was misdiagnosed with depression, PCOS, adrenal fatigue and IBS.

When there is no diagnosis or explanation for what is happening, there are no words, only feelings. And for those with PMDD, that can be extremely dangerous. Sandi MacDonald knows this well, describing coming from a small town in Nova Scotia as living in a “very lonely space.”

After surviving a suicide attempt, MacDonald knew she needed to do something, and after meeting Amanda LaFleur through Facebook, they founded the IAPMD in 2013 as a patient-led organization. The 51-year-old co-founder and executive director was not diagnosed until her 40s, when she was already in perimenopause.

What started as a few people has grown into an international organization, whose vision is to see patients thriving, not just surviving. “We’ve had so many people come back to us and just being like, I don’t feel alone anymore,” says MacDonald. “That’s why we need to talk about it because people should not be considering taking their lives as a result of their cycles.”

“The diagnosis did nothing except give it a name. You know, nobody really understands what it is.”

Whether it comes with relief, confusion, anger or sadness, a correct diagnosis of PMDD can be lifesaving. However, after diagnosis, many women are not given more information about PMDD and are instead given a prescription and sent on their way. The general lack of knowledge can mean a diagnosis is still alienating, as it was in Brookes’ experience.

Her frustration comes from the fact that “the diagnosis did nothing except give it a name. You know, nobody really understands what it is.”

Selective serotonin reuptake inhibitors (SSRIs) are the first-line treatment for PMDD and three – fluoxetine, paroxetine, and sertraline – have been approved by the Food and Drug Administration (FDA). Birth control, or oral contraceptives (OCs), are another first-line treatment, and while the only FDA-approved OC is Yaz, others are used off-label. SSRIs can be lifesaving for those who respond well to them and become effective within days of starting treatment.

However, these medications do not always work and can have serious side effects. SSRIs are only effective in 50 per cent to 60 per cent of women with PMDD and OCs are classified as a level one carcinogen. Other potential treatment options include quetiapine (an atypical antipsychotic) and chasteberry. As a condition that has the potential to last from menarche to menopause, further research and funding into PMDD treatments must be supported.

Surgical menopause is the last resort option for severe treatment-resistant PMDD and involves the removal of both ovaries and the uterus. It is common for doctors to have patients try chemical menopause first before proceeding with surgery. Chemical menopause stops the fluctuation of hormones by suppressing ovulation to create temporary menopause.

Every three weeks, Coulis gives herself a shot of Lupron to keep her in chemical menopause. At first, this alleviated her mood swings but was accompanied by muscle and bone pain, insomnia, hot flashes and night sweats. At 44, Coulis will remain on Lupron until she reaches the age women typically go into menopause; she will then be taken off the injection to confirm whether she is in natural menopause.

Those who do not tolerate the side effects of treatment usually turn to natural supplements, lifestyle changes and cycle tracking to manage their PMDD. Yaz made Joyce gain weight and lowered her mood, so she switched to sertraline, but after being on it for two years and still gaining weight despite eating healthy and exercising, Joyce decided to come off it altogether.

Brookes has worked hard to change her mindset, practices gratitude, gives herself permission to rest, volunteers and has found a spiritual connection in nature.

Unmanaged PMDD is destructive and tends to get worse with age, having devastating consequences on relationships and employment. Hentges’ relationship dysphoria from PMDD has “taken all the shine off my marriage.” Last October was the first month Hentges lived alone after separating from her husband of 12 years.

When Coulis reflects on her PMDD before Lupron, she remembers wanting to leave the romantic relationship she was in every month. “It made it impossible to make decisions because my feelings about things would change so dramatically and so often.”

Joyce still struggles with not wanting to get out of bed some mornings and has to wake up an hour early just so she can wake up her whole body. It is even more difficult to handle when the workplace is not accommodating, as one employer once said to her, “Oh, but this person has their period, how come they can work?”

Since being diagnosed, Hentges has volunteered as an IAPMD peer support facilitator, hosting a video support group called Befriending Your PMDD/PME “Monster.” It is based on the idea that “if you have PMDD, there’s got to be a healthy relationship that you can have with it through self-awareness, self-compassion and self-love.”

When Brookes lost her sister to suicide, she realized she needed to share her story to help others.

“If you’re having trouble advocating for yourself, think about all of the young people coming up behind you that might need your help and support and do it so that it’s better for them,” she says.

I had never met anyone with PMDD until I began interviewing women for this article, and I am so grateful to everyone who shared their story with me.

For women living with PMDD, every month is a fight to survive. However, with more research, education and advocacy, there will be a day when all those with PMDD will not merely survive but thrive. I believe that there is light at the end of the tunnel for me and all of those with PMDD.

“I have so much joy in my life and I’m so incredibly grateful for it,” says Brookes. “I live with PMDD so it can be done.”

If you or someone you love wants to learn more about PMDD, please visit the International Association for Premenstrual Disorders.