The ‘horror-mones’: How premenstrual dysphoric disorder can destroy women’s lives

PMDD affects an estimated one-in-20 women, with symptoms including extreme anxiety, anger, depression and loss of libido

When Sheila Lafferty’s son was six years old, he had a deathly fear of the “horror-mones”. “I remember trying to explain to this little person who totally depends on me: ‘Listen, it’s not you when I’m flipping out, it’s the hormones.’ But God love him, he was petrified,” says the 38-year-old, who works as an advocacy officer for a Dublin-based social support service.

When it came time for sex education classes towards the end of primary school, he worried that all of the girls in his class would act out their “horror-mones” in the classroom. “No, this isn’t going to be like Night of the Walking Dead,” she reassured him, “Most people have their periods and they’re fine. This isn’t what most people go through.”

It was not until her mid-20s that Lafferty began connecting the dots between her frequent “outbursts of rage and despair” and her menstrual cycle. From the time that she ovulated until the onset of her period, she describes “losing herself” to depression, brain fog and a mystifying inability to withstand the noise and bustle of crowded trains.

For Lafferty, the eureka moment arrived after she typed a simple question into Google: “How to survive extreme PMS?” Delving into the “deepest corners of the internet”, she stumbled upon the International Association for Premenstrual Disorders (IAPMD) and something that, to her, sounded suspiciously like a “makey-uppey” Americanism.

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“I had never heard of PMDD [Premenstrual Dysphoric Disorder] before,” Lafferty says. “Bust as soon as I read through the symptom list, I just knew. It fitted me like a glove.”

PMDD is a “spectrum condition consisting of behavioural, psychological and physical symptoms that arise during part or all of the luteal phase of the menstrual cycle, which lasts from the day after ovulation to the day before a woman’s menses [bleed],” says Dr Brenda Moran, a GP and the founder of Danu Clinic, a Cork-based menopause and PMS practice. “The widely accepted theory is that PMDD is an abnormal brain response or sensitivity to normal menstrual cycle fluctuations, and the impact these fluctuations have on neurotransmitters like serotonin, dopamine and GABA.”

The diagnostic criteria for PMDD, outlined in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5), require the presence of at least five clinical symptoms. Among others, these include mood swings, depressed mood, anxiety, lethargy, changes in appetite, breast tenderness and joint or muscle pain.

Dr Katja Schmalenberger, a clinical psychologist at the University of Illinois Chicago (UIC), has co-developed the Carolina Premenstrual Assessment Scoring System (C-PASS). This algorithm draws on two menstrual cycles of daily symptom ratings to make the DSM-5 diagnosis of PMDD; crucially, these symptom ratings are collected prospectively rather than based on memory. Schmalenberger, whose research focuses on “the reliable and valid assessment of PMS and PMDD”, says that the pattern in which symptoms emerge is just as crucial to PMDD diagnosis as their specific content.

“The five symptoms, including at least one emotional symptom, must demonstrate clinical severity during the premenstrual phase [the week leading up to menses], followed by symptom clearance in the postmenstrual phase [after menses],” Schmalenberger explains.

Though PMDD is often conflated with mild PMS, which affects more than 90 per cent of menstruating women, Moran says that “the key [differentiating] factor is how the symptoms are affecting your function. PMDD significantly impairs interpersonal relationships, work, school and college attendance.”

According to the IAPMD, an estimated 5.5 per cent of women experience PMDD. Irritability or anger is one of the cardinal symptoms.

“You feel confused because it’s like your head is somewhere else and when somebody is talking or something is happening, all of it just sounds like noise,” says “Grace” (not her real name), who lives in Kilkenny and works in the insurance industry. During the storm of her monthly symptoms, even minor irritations, such as her daughter’s messy room, can become “intolerable”, exacting a significant toll on her close relationships.

“During my bad weeks, my partner just disgusted me, to the point where everything they did just annoyed me. I’m a single parent, I’m 39, and I’m not able to maintain a relationship because of this,” she says.

When asked about rage, both Lafferty and Toni Ireton, a 41-year-old former graphic designer living in Co Kildare, think immediately of fire. Lafferty describes the turmoil of “setting fire to everything around you every two weeks” and then scrambling, in the aftermath, to clean up the ashes. “It’s a really high-energy anger, an unbelievable rage. You could spend hours and hours just walking off the strength of your own anger,” she says.

For Ireton, “PMDD mode” often feels like being a “ball of flames”. What is most frightening for her is the suddenness of this transformation as, without warning, she “goes from zero to 2 million in just a few seconds”.

Ireton, who discovered she had PMDD three years ago, finds her fiery responses are prompted by seemingly small provocations, such as someone commenting on what she is wearing. Although such responses may appear to lack proportionality from the outside, Ireton says the experience can be just as terrifying for the person with PMDD. This is especially true when they find themselves in a social or work environment.

“It feels like you’re standing at the edge of a cliff, and any slight blow of wind could send you into danger,” she says. “You’re screaming so loud and every single part of your body is tense and you just can’t scream enough to release it. You’re fighting with people for reasons you normally wouldn’t, or saying things you can’t take back. I’ve lost a lot of friends.”

When I started struggling with self-harming and suicidal ideation, I knew I had to figure out what was going on. I finally went to see my GP

—  Sheila Lafferty

The profound impact of PMDD on Ireton’s life extends far beyond intense mood swings. Overwhelming fatigue, the complete loss of her libido, and excruciating joint pain have impacted her ability to work, socialise and even date. “Every two weeks, I had to stop walking because my hips were so painful,” says Ireton, who was a regular surfer and hiker. “That meant I couldn’t go out anywhere, I couldn’t go see my friends, I couldn’t work, I couldn’t do anything because I could barely leave the house.”

Substantial weight gain, resistant to all her dietary and exercise efforts, was yet another distressing aspect of her experience. Over the past six years, as her PMDD worsened, Ireton saw her dress size increase from 10 to 20, attributing the change to what she describes as “insane food cravings”. For about 10 days of the two weeks during which she was in the luteal phase of her cycle, she used to wake up thinking of custard creams.

“When I got these cravings, I would feel this anxiety in my chest and I would try and hold out and hold out and hold out,” she says. “But eventually, it would start to feel like someone was choking me. It wasn’t until I’d go and eat the thing that my brain was telling me to eat that my whole body would calm back down again.”

While food cravings are a symptom of various chronic health conditions, one distinctive characteristic of PMDD distinguishes it from others. Women with PMDD experience symptom relief during the follicular phase of their menstrual cycle, which lasts 16 days on average, starting from the first day of menses and ending just before ovulation.

“It is this absolute postmenstrual clearance of symptoms which sets PMDD apart from premenstrual exacerbation or PME,” says Schmalenberger. “Individuals with PME have another underlying chronic disorder whose symptoms persist throughout their menstrual cycle, but they experience an exacerbation or worsening of these symptoms just before the onset of menses.”

Recent research from University College London reveals that menstruating women with chronic disorders such as depression, borderline personality disorder, eating disorders and panic disorder experience PME at a much higher prevalence than the estimated 5.5 per cent of individuals with “pure” PMDD.

For many women who are still menstruating, the psychological toll of PMDD – as distinct from the more prevalent albeit lesser-known PME – can be uniquely challenging. It is akin to the experience of “losing oneself” – not forever, but nine to 12 times a year, just like clockwork.

“You’re trying to get yourself back together, and then, by the time you do, it’s happening all over again in only two weeks,” Lafferty says. With all the dizzying abruptness of an internal switch going off, she was always guaranteed to return to herself again, but not without a certain degree of shell shock. The relief she felt was often eclipsed by her frenetic attempts to squeeze four weeks of life into the only two “functional” week she had left.

“The longer it went on the less able I was to function,” Lafferty admits, reflecting on the relentless and exhausting nature of the cycle. For those “bad weeks”, she describes it as a “battle for her life”, one that she had to wage every time she ovulated.

From Ireton’s perspective, she might have found it less traumatic to discover that she was going to be permanently ill than to experience this constant yo-yo effect. “I’m not sure I can find the words to describe how difficult it is to watch yourself get ill over and over and over again. It felt like there was always a carrot dangling in front of my face.”

Although she experienced a brief respite from her symptoms during pregnancy and breastfeeding, Lafferty experienced a gradual decline in her mental health from the time that she weaned her son, eventually “hitting a depressive wall”.

“When I started struggling with self-harming and suicidal ideation, I knew I had to figure out what was going on,” she says. “I finally went to see my GP.”

For Lafferty, Ireton and Grace, reaching diagnosis was yet another mountain to climb. A recent study conducted by researchers at the University of Manchester found it takes an average of 20 years for women to receive a diagnosis of PMDD.

Following multiple blood tests, GP visits and even an MRI scan of her lower back, Grace says that she felt many of her recurrent symptoms were “medically invalidated”. After being told she likely had generalised anxiety disorder and prescribed antidepressants by her GP, she was “flabbergasted” when a psychiatrist at St Canice’s Hospital in Kilkenny finally diagnosed her with PMDD. “I just remember feeling such relief and thinking, ‘I’m not mental, it’s just my hormones,’” she says.

Lafferty, who knew about PMDD before her GP did, says that she waited almost three years for a referral to a primary care psychology service in Dublin. Before she attended the service, several counsellors attributed her symptoms to either depression or the challenges of single parenting on a low income. Although initially unfamiliar with PMDD, the psychologist was later able to confirm the diagnosis using the DSM-5 diagnostic criteria and C-PASS.

While receiving a diagnosis brought some relief, Lafferty emphasises that “a diagnosis doesn’t mean a treatment plan”. She says other psychiatrists she saw later rejected the diagnosis and insisted she was “suffering from stress”, adding to the uphill battle for symptom relief.

To complicate matters further, there are currently no clinical guidelines for the diagnosis or treatment of PMDD in Ireland. This necessitates referencing guidelines set by organisations such as the IAPMD or those from the UK, such as the National Association for Premenstrual Syndrome (NAPS) or the Royal College of Obstetricians & Gynaecologists (RCOG).

“When dealing with mild to moderate PMDD, lifestyle adjustments can make a big difference, like getting enough sleep, exercising, reducing screen time and improving diet,” says Moran. “But in more severe cases, we often have to turn to other pharmacological treatments for smoothing out the oestrogen/progesterone fluctuations.”

In line with UK-based guidelines for PMDD management, Lafferty’s GP recommended she start taking Prozac during the symptomatic weeks. Moran explains that selective serotonin reuptake inhibitors (SSRIs) can help to alleviate PMDD symptoms by “stabilising serotonin level changes” linked to hormonal fluctuations in oestrogen and progesterone during the menstrual cycle.

Although the SSRIs led to a marked reduction in Lafferty’s rage and suicidal ideation, she admits that the treatment was far from perfect. “Getting on the antidepressants got me through university. It allowed me to start my career. But I was struggling. I lost my libido and I still didn’t feel fully myself.”

It was not until 2019 that Lafferty finally felt as though her sense of self had been restored “for the first time in almost 15 years”. Following information gleaned at an Aware-sponsored talk presented by consultant psychiatrist Dr Robert Daly, she switched from Prozac to the oral contraceptive Yaz (ethinyl estradiol/drospirenone). “I’d tried other oral contraceptives and even the Mirena coil, but this was the first pill that really worked for me. I’m living a normal life now, I’m back to being me 24/7, and my mental health is no longer an issue,” she says.

Yaz is a combined birth control pill which is prescribed off-label without any breaks for PMDD in the US. According to Moran, oral contraceptives such as Yaz work by blocking ovulation, which in turn suppresses the luteal-phase hormonal fluctuations believed to trigger PMDD symptoms.

While it may be tempting to think that continuous oral contraception is a one-size-fits-all solution, responses to PMDD treatments vary among individuals. Grace takes the oral contraceptive Yasmin back-to-back – containing the same active ingredients as Yaz but with a higher dose of oestrogen – which offers her greater flexibility when planning for a holiday or an important event. It does not, however, eliminate her symptoms. Advised to undergo dialectical behaviour therapy (DBT) by her psychiatrist, she finds herself “in a state of limbo”, as the public clinic she attends lacks this service, and the private clinics are either full or not covered by her health insurance.

In the absence of a specialised PMDD service and limited PMDD-literate GPs in Ireland, Ireton has resorted to seeking treatment for severe PMDD at the London PMS & Menopause Clinic. For more than two years now, she has been undergoing hormone replacement therapy (HRT) as an alternative non-pill-based method for suppressing ovulation and maintaining more constant hormone levels.

“The rationale for HRT in treating PMDD is that, rather than using synthetic hormone, you’re using [bioidentical] oestrogen that the ovary would naturally produce to smooth out the fluctuations,” says Dr Neale Watson, a consultant gynaecologist at the London-based clinic where Ireton receives her treatment.

Similar to Lafferty’s experience with Yaz, Ireton’s HRT must be delivered as a very specific formulation, otherwise her symptoms may reoccur or even worsen. The constant threat of a supply chain disruption or even a dispensing error looms like an ever-present storm cloud. “I have to take really good care of myself because there are times that the rug will be pulled from underneath me,” she says.

And yet, despite weathering the cruellest of storms, she tells me that now, with the HRT working, she feels remarkably peaceful. “I feel like I have myself back. I’ve never felt as calm as I do now.”

PMDD Awareness Ireland is a non-profit organisation providing information and support to women impacted by PMDD