What Causes PMDD? Yeah, They Don’t Know

Photographed by Ruby Woodhouse.
Disrupted sleep, anxiety, tearfulness, irritability, breast tenderness, food cravings, fatigue, bloating, headaches, brain fog, clumsiness: these are just a handful of the 150 identified symptoms of premenstrual syndrome (PMS). No one experiences all these symptoms to the letter; everyone has their own constellation. For some, one or two symptoms may be dominant and vary in severity from one cycle to another.
Most women and people with wombs will experience PMS at some point. For a small number, emotional distress in the luteal phase of their cycle (from ovulation through to when bleeding begins) can be so severe that it interferes with work, relationships, social activities or school. In such cases, a diagnosis of premenstrual dysphoric disorder (PMDD) may be given. In the UK it is estimated that 5-8% of people who menstruate have PMDD. So what is happening in the bodies of those who suffer so much? Short answer: we don’t know. Consequently, when PMDD was formalised as a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) in 2013, it was met with some controversy. 
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There are theories about why some women feel like their psychic software is hacked each month, but no definitive answers. Evidence suggests that PMS relates to the fluctuation of sex hormones like oestrogen and progesterone in the luteal phase of the menstrual cycle between ovulation and the first day of bleeding. Some women (myself included) seem to be more constitutionally sensitive to these changes. The absence of symptoms before puberty, during pregnancy and after the menopause, when sex hormones are largely stable, suggests that cyclical ovarian action is key to PMS. However, as I found out when I spent a year researching my book, Hormonal: A Conversation About Women’s Bodies, Mental Health and Why We Need To Be Heard, there are not so much gaps in the research as massive sinkholes. 
Consultant gynaecologist Mr Nick Panay specialises in treating PMS and chairs the National Association for Premenstrual Syndromes (NAPS). He says confusion remains among healthcare professionals about PMS and how bad women can feel. "Part of the problem is inadequate training," he tells me. "It is not mandatory to learn about the complexities of PMS, even for gynaecology doctors, so old prejudices persist. Awareness has grown but there is still a sense of not understanding why women can’t just cope with these symptoms." Unsurprising, then, that the evidence base is lacking. 

Part of the problem is inadequate training. It is not mandatory to learn about the complexities of PMS, even for gynaecology doctors, so old prejudices persist. Awareness has grown but there is still a sense of not understanding why women and people with wombs can't just cope with these symptoms.

DR Nick Panay
Researchers once thought that women with PMDD may have abnormal levels of hormones but the theory didn’t hold. No hormonal excesses or deficiencies have been observed in women diagnosed with PMDD. The science surrounding signalling changes in the emotion-processing parts of our brain during the menstrual cycle is imprecise, too. Many functions of the human brain are veiled in mystery but if fluctuating sex hormones can result in signals being sent to the brain that cause low mood or anxiety, we don’t know why this happens for some women and not others. Given our poor understanding of the biology behind PMDD, is it actually fair to ascribe the language of psychiatric disorder to these symptoms?
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Since I began retraining as a psychologist, my thoughts on psychiatric diagnoses – and the power therein – have changed significantly. Studies suggest that diagnostic terms have little scientific validity and I have written about this widely. There is ongoing debate in the mental health field about whether medical-sounding labels contribute meaningfully to how we understand the complex causes of human distress and the kind of help we need. Diagnoses can be very helpful to some people and deeply oppressive for others. In my opinion, any term – including PMDD – that defines an aspect of our being as ‘disordered’ warrants discussion and interrogation. 
‘Dysphoria’ is a psychiatric term, drawing on the Greek word dusphoros (‘hard to bear’). Many high profile clinicians and researchers criticised the inclusion of PMDD in the DSM-V as a move that pathologises women’s normal fluctuations and risks the status of a recognised diagnosis being used to claim that women’s emotions are inherently unstable – a mentality we have been fighting for centuries. Another concern was how framing premenstrual distress as a ‘disorder’ could be financially lucrative. The role of powerful pharmaceutical companies in promoting DSM disorders is central to the ongoing discussion about how we categorise human distress, including PMDD
For women feeling out of control, self-sabotaging and, in some cases, suicidal each month, the cycle is exhausting. Although the distress passes, the effect on someone’s sense of self, compounded by a fear of those emotions returning, can be profound. Is it possible to help manage this distress without using pathologising terms? Only the individual can decide what helps them function well. If a clear diagnostic label and the treatment that comes with it helps, great. Making sense of difficult emotions with language is how we codify ourselves in society and doing so without language is impossible. My concern is that ‘disorder’ – by definition signalling abnormality – may make some women feel more out of control; that a monster within is always waiting to bare its teeth. 
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If we root personality and emotion in the reproductive system, we may internalise the idea that we're meant to be unstable. Hormones are part of the picture but we cannot blame them entirely. We need to stop questioning whether women's experiences are 'real' and start giving them real primacy.

Panay’s view is that "PMS is regarded as something not as serious, but severe PMS and PMDD are one and the same." On the one hand, PMDD diagnosis can feed into harmful stereotypes about women. On the other hand, formal recognition can make a difference to someone who feels totally at sea in themselves. The sense of community in the growing number of PMDD forums online is understandably validating, too. This is particularly true when you consider the lack of support women may have experienced from a general practitioner who lacks knowledge. 
Women’s pain – physical or emotional, as if the two can be extricated – has been minimised and dismissed for centuries. Many women diagnosed with PMDD have felt invalidated in the past. It is common to receive a prior diagnosis of bipolar disorder, for which antipsychotic drugs are often prescribed. I have met women for whom a diagnosis of PMDD meant they finally accessed specialist treatment which helped – most often involving a combination of medication and psychological therapy. This goes to the heart of the matter: without medical terminology, women’s emotional distress is often not taken seriously. Does that matter? Depends on the woman. It does to me.
Anyone who has experienced premenstrual distress knows how real the emotion is. "I have worked therapeutically with a number of women who experience significant premenstrual distress, which includes feelings of despair, anxiety, stress and depression," Dr Kelly Abraham-Smith, a clinical psychologist who specialises in women's health psychology, tells me. "They often report feeling overwhelmed and frightened by their emotions and thoughts and find that their normal coping mechanisms are much less effective in this phase of their cycle. This can leave them feeling out of control, vulnerable and helpless." 
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Treating premenstrual distress is often a case of trial and error because no two women are the same. "We are forever seeing idiosyncratic reactions," says Panay. “But with patience we usually find something that helps women function better." Interventions may include hormonal treatments (the combined contraceptive pill, which can be taken back-to-back so you don’t have periods, or the Mirena coil), SSRI antidepressants and cognitive behavioural therapy (CBT). If symptoms are very severe, drugs called gonadotropin-releasing hormone analogues (GnRHa) may be used. These act on the pituitary gland to suppress ovulation. The only ‘definitive’ treatment is a hysterectomy (removal of the womb) and oophorectomy (removal of the ovaries), completely eliminating the menstrual cycle. I interviewed a woman for Hormonal who elected to have this surgery; she said it changed her life.

Clinical trials are underway for the first drug developed specifically for PMDD: Sepranolone. The drug inhibits the effects of a substance called allopregnanolone, a naturally produced steroid that appears to play a role in how the brain reacts to hormonal changes.

A far less radical treatment frontier may be gene-specific medications. In 2017, American researchers published a study which showed that sensitivity in a particular gene complex was linked to PMDD. Panay says this is "the most compelling research to date" on how our genetics may inform the sensitivity of our cellular responses to hormonal changes. But this is just the beginning of proving there is a biological basis. "We need much more research," he states emphatically. 
Clinical trials were, until recently, underway for the first drug developed specifically for PMDD: Sepranolone. The drug is not an SSRI or hormone; instead, it inhibits the effects of a substance called allopregnanolone, a naturally produced steroid that appears to play a role in how the brain reacts to hormonal changes. Sadly, the results from the latest trial proved inconclusive and while Sepranolone will continue to be explored as a treatment for menstrual migraines, it will not continue to be developed for PMDD sufferers. Panay himself trialled Sepranolone with some of his patients and says it was difficult to gauge its effectiveness because the placebo effect was so strong. "People were so happy to be taking part in a study where their symptoms were being taken seriously," he says. "So there was a lot of positive reinforcement." 
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This speaks to something I have heard again and again: when a woman feels listened to and validated, or is encouraged to take proactive steps at becoming aware of cyclical changes in mood (such as keeping diaries or using cycle-tracking apps), the effect can be significant. Our experiences feel more ‘held’ and controllable. A more joined up approach to women’s health is needed to ensure this happens more often. Panay speaks of a "lack of widespread collaboration between gynaecology and psychology," stressing that "changes must happen at policy level". 
Emotion lives in the body as much as the mind, which makes the role of psychology incredibly important in this area. Abraham-Smith explains that some women she’s worked with "have described how, in the premenstrual period, they have to face their difficult ‘internal world’ that they spend the rest of their menstrual cycle trying to avoid." If a woman’s premenstrual distress makes her feel unable to function, she should be receiving dedicated healthcare and support. There may be interactions between hormones and brain chemistry that need more dedicated research but, on a wider level, this idea of facing our internal world is striking. 
Could it be that we are so used to repressing anger, frustration and sadness that feeling these things so acutely frightens us? We need to be reminded that we are changeable beings by design, encouraged to accept that it is literally impossible to be a certain way all the time. Moods have movement. Anger can be a force for necessary change in our lives. If we root personality and emotion in the reproductive system, we may internalise the idea that we’re meant to be unstable. Hormones are part of the picture but we cannot blame them entirely. We need to stop questioning whether women’s experiences are ‘real’ and start giving them real primacy. To my mind, it’s a shame we need pathologising terms to do so.
Eleanor Morgan is an assistant psychologist and author of Hormonal: A Conversation About Women's Bodies, Mental Health and Why We Need to Be Heard

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