How Can We Know More About Erectile Dysfunction Than PMS?

"It’s just sort of like a folklore thing, PMS," says Charlie. "It’s like, your mother had PMS, and her mother had PMS, and all these women just had to go and be quiet during the month and there was nothing really anyone could do about it."

Charlie has premenstrual dysphoric disorder (PMDD), a severe form of premenstrual syndrome which can cause extreme mood swings, tiredness and, for some people, suicidal ideation.

The 30-year-old’s condition, which affects 5-8% of people who menstruate, was initially misdiagnosed as bipolar disorder. "I guess I identified the sort of cyclical nature of the unhappiness I was feeling," Charlie says. 

"The only way you can have peace with it is to be like, 'I both am and am not my hormones'," she explains. "You have to make peace with it a bit because, whether or not there are ways for you to manage it, there is no easy, quick, definite solution." 

In its less severe – and more common – form, PMS affects over 90% of women and people with wombs. Despite the fact that more than 200 different symptoms have been identified for the condition, Dr Kimberly Yonkers, a professor of psychiatry, obstetrics, gynaecology and reproductive sciences at Yale University, says that some medical practitioners still don’t believe it exists at all. Studies show that prevalence rates for PMS vary from 20% to 30%, depending on the underlying diagnostic criteria.

"There are also very well-meaning individuals who feel the diagnosis stigmatises women because of the age-old stereotypes about women and hysteria, and they would like it to not exist," says Dr Yonkers, who has been researching PMS for over two decades. "But I'm responding to our patients... I can't tell them, 'Oh, it's all a figment of your imagination,' because they're genuinely suffering."

Since the now-outdated term premenstrual tension (PMT) was coined in 1931, medical research still hasn’t found a universally agreed cause – or a catch-all cure – for the range of symptoms women experience in the days and weeks running up to their period. In fact, for every piece of research into PMS there are five studies into erectile dysfunction (ED), according to ResearchGate. Yet over 90% of women experience at least one symptom of PMS while just 19% of men are affected by ED. So why isn’t more known about a condition that debilitates millions of women around the world?

Dr Yonkers explains that "there are just a handful of us" in her field of research and that she is "one of the few investigators" who has received funding from the National Institutes of Health (NIH), the United States’ medical research agency. PMDD was only formally recognised in 2013 when it was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), a text used to help diagnose psychiatric conditions in the US. "That certainly helped us make the case for the need to take a look at this," Dr Yonkers tells me. "But let's be honest, at least in the United States, as well as other areas of the Western world, there is a tradition of not taking women's complaints seriously."

The first mention of what we now know to be symptoms associated with the menstrual cycle is found in an ancient Egyptian document called The Kahun Gynaecological Papyrus (from around 1800 BC). This listed symptoms like headaches, sensitivity to light, abdominal pain and heavy bleeding, which were attributed to the "wandering womb", an evil creature that moved around the body. The unexplained mysteries of the womb have also historically been linked to witchcraft and demonic possession.

For Charlie, simply recognising what was at the root of her mood swings, brain fog and lethargy was a major help in managing her condition. "It’s understanding the cyclical nature of it and knowing that it has a finite ending and a rhythm to it," she says. "And, at the bare minimum, no matter how horrible it is, it is contained to that time and I just try to really enjoy, be productive in and celebrate that time when I don’t have PMS."

Dr Peter Schmidt, principal investigator at the US’s National Institute of Mental Health, has been studying PMS since the 1980s in an effort to find out what causes the condition, why some women experience it more severely than others and how it can be treated. 

Dr Schmidt says his research suggests that PMS isn’t caused by "a deficiency or excess of any particular hormone" but rather by the differing reactions of women’s bodies to normal changes in hormone levels during the month. What predisposes some women to these responses, and not other women, is still not fully known. 

In 2017, Dr Schmidt found evidence of a possible genetic predisposition in women with PMDD. "Genetic can mean both genes they were born with but also – particularly relevant for that study – epigenetic changes, so changes where the environment may influence the way in which genes are expressed."

When the study was published, his colleague Dr David Goldman called the findings "a big moment for women’s health" and said they proved that women’s symptoms were "not just emotional behaviours they should be able to voluntarily control". Dr Schmidt hopes that the NIH will be able to build on this research and, in the future, create a new drug called dutasteride (medication normally used to treat an enlarged prostate) which could be used to treat PMDD. He is also hoping that new potential treatments will be found from the genomics studies that are currently underway but these, he notes, "will be a way off in the future".

Though there is currently no cure, research by Kimberly Yonkers established that serotonin reuptake inhibitors (SRIs) are an effective treatment for many women with PMDD. For others, the contraceptive pill can help alleviate symptoms and some patients report improvements from a change in diet, doing more exercise or cutting down smoking and alcohol. 

Fiona Jenkins runs a Facebook support group for PMDD sufferers and has seen firsthand how treatments can affect people differently. "I can't take any kind of [hormonal] contraception, it drives me around the bend. With other people, they take contraception and it works beautifully for them," she explains. "I've had to learn on my page not to inflict an absolute opinion on people."

Exercising more has made a big difference to twentysomething sufferer Maddie Campion’s PMS symptoms. "When I started walking to work and, in lockdown, I started cycling every day just to get some exercise, the differences were quite dramatic," she recalls. 

Maddie feels there’s still a degree of mystery around PMS symptoms which prevents women from understanding whether their experience is mainstream. "My friend tweeted 'I just want a period where I don’t have diarrhoea' and I was like 'Oh my God, I thought that was just me!'" she says. "No one ever really discusses it so you don’t know what a level of normal is." 

In an attempt to help women track their symptoms and aid doctors, psychotherapist Carolyn Janda created a symptom diary to help diagnose severe PMS and PMDD while she was training at the University of Marburg in 2015. Women were asked to complete the diary for two menstrual cycles, answering 30 questions relating to the 11 symptoms used to diagnose PMDD in the DSM-V. Researchers used the same symptom list and diary to diagnose PMS but employed less strict requirements when judging whether women met the threshold for this condition. 

The symptoms featured were: emotional dysregulation, irritability or anger or increased interpersonal conflicts, depressed mood, anxiety or tension, decreased interest in usual activities, difficulty concentrating, lethargy, change in appetite, hypersomnia or insomnia, a sense of being overwhelmed or out of control, and physical symptoms (e.g. weight gain).

Janda also investigated prejudice towards women with PMDD and found that study participants’ perceptions of a PMDD patient improved when given more information about the condition. Like Dr Yonkers, Janda believes PMDD’s addition to the DSM-V was "a turning point" for researchers. However, she says that getting other academics to take the topic seriously wasn’t always easy. "The subject is often laughed at in the research world," she tells me. "When we started in 2012, nobody was interested in the topic. It feels like this has only come in recent years." 

When Rachel, 27, began to experience more severe PMS a few months ago, she says she would have found it too difficult to discuss the condition with her employer, despite the fact it was interfering with her ability to work. "I just felt so awful. I was lying in bed thinking, Oh God, can I call in sick today? I really don’t want to go to work," she recalls.

"I would have to email, or ideally call, the male HR partner in my team and he is very understanding but I’d still find it quite uncomfortable," she continues. "It's still like it's not as acceptable as it is to say, 'I've got a cold today, I’m not coming in'."

Though gender bias has clearly played a role in slowing research progress for PMS, Dr Michael Craig, consultant psychiatrist at the London Maudsley Hospital’s Female Hormone Clinic, says there are also practical roadblocks which mean the condition isn’t straightforward to study. 

Dr Craig, who is a trustee of the National Association for Premenstrual Syndromes, tells me that women’s experiences of PMS are so broad and varied that defining whose premenstrual symptoms are severe enough to come under the umbrella of PMS is difficult. "The problem is, whichever definition you use, you end up with a situation where you're either going to be too inclusive and therefore pathologising too many people, or you're going to be too exclusive and you're therefore going to limit treatments to people that probably need it." 

The condition also suffers from falling through the cracks of multiple medical disciplines, says Dr Craig. "One of the difficulties at the moment is that training for medical students has now become much more streamlined," he explains. "Gynaecologists do not really get much training in psychiatry and psychiatry trainees do not get very much training in gynaecology. So there's a bit of a space in between where conditions like this fall down and it’s left mainly to the GPs, some of whom are interested in PMS, some aren't. Some don't believe in its existence, some clearly do."

So even medical experts are approaching this from different angles. Sally King, a PhD student at King’s College London’s Department of Global Health & Social Medicine, is one of those who thinks we’re approaching PMS all wrong. She first became interested in researching PMS when she realised that the nausea and vomiting she was experiencing were linked to her cycle. In 2016, she set up a website called Menstrual Matters which provides information about the effects of hormonal changes and features a web app where users can track symptoms. Users can then show this record to their doctor to help them differentiate normal hormonal symptoms from other health conditions. 

Sally wants to see "a more precise and evidence-based definition of cyclical symptoms. Ideally, one that could inform the creation of a standard list of the most common ‘PMS’ symptoms to aid diagnosis, improve the comparability of research findings and destigmatise the normal experiences of the vast majority of people who menstruate."

Though Sally recognises that many women do experience a range of psychological and physical effects during their cycles, she believes these experiences don’t amount to a 'syndrome' at all. "The clinical side of things is heavily influenced by gendered narratives we have in society," she says, adding that women expressing irritability is often seen as "bad or unfeminine".

"The tendency is for us to internalise that as being our body making us feel this way instead of a situation that has triggered it. It might be a heightened response but the point is it's a totally rational response to something that's irritating or sad," she adds. 

Sally, who is the author of Premenstrual Syndrome (PMS) and the Myth of the Irrational Female, also points out that other effects of PMS, like weight gain and spots, wouldn’t be characterised as 'symptoms' if we viewed women’s bodies differently. "They're just byproducts of hormonal changes – they wouldn't be causing any harm if we didn't have this pressure to look perfect, and that perfect is to be not fat and not spotty."

Sally's PhD is on discourses surrounding PMS and how they’re influenced by gender bias. She believes that research should focus more heavily on exploring why the menstrual cycle can worsen conditions like migraine, IBS, epilepsy and asthma. "If you worked out what the different physiological changes were that could exacerbate these underlying conditions, you would find out a lot about both the menstrual cycle and what causes those conditions for everybody, men and women."

Dr Craig says there is always a political element to what is prioritised in the research world and that PMS is competing for funding against conditions like cancer, heart disease and, currently, COVID-19. "There are times when these things come up on the political agenda as being more important. In the recent past, for example, perinatal mental health has been perceived to be more important than it was perhaps a decade ago and there has been more funding that's gone into that area," he says. "But this area is not one that's so far managed to attract that sort of interest or funding."

Right now, for Charlie, it’s about putting strategies in place to manage PMDD and having people around her who understand and recognise the reality of her condition. One of the toughest things in the past has been not understanding why she felt the way she did. "You just feel so gaslit by it over such a long period of time," she says. "I’d love to hear it if someone could tell me the answer, but I'm very prepared for there not to be an answer."