It was after the birth of her first child that Dr Milli Raizada noticed a profound change in her mental health. Aged 27 at the time, she had felt wonderful during pregnancy. But afterwards her mood darkened – she became anxious, irritable and low.
At first she assumed it was the ‘baby blues’ – which affects eight in ten new mothers in the days after birth – or, as it persisted, postnatal depression.
As a GP, she had seen it many times in patients and thought she recognised the signs. ‘I was working a stressful job with a young child, so that also contributed,’ she says.
But in the months that followed she began to notice something else – her depressive episodes, strangely, followed the same rhythm as her menstrual cycle.
For around two weeks of the month, right before the start of her period, she felt irrational and sad, struggling with even the simplest tasks. Then, for the rest of the month, she felt completely back to normal again.
‘I went to my own doctor, and I can vividly remember her telling me that I was too stressed and needed to take less on. I tried, but that didn’t change anything,’ says Dr Raizada. ‘In the meantime, it was beginning to impact my work and my relationships.’
Alys Golding and Dr Milli Raizada both experienced PMDD without realising at first what their condition was
Pregnancy with her second child offered some respite, but the vicious cycle returned as soon as she gave birth again.
Finally, five years after her first symptoms, she desperately decided to seek help from a private gynaecologist.
‘I walked into the consulting room and immediately burst into tears. And after just a few minutes of explaining how I was feeling, the specialist told me that I likely had PMDD,’ she says. ‘I was a GP at the time, and throughout medical school and my work in practice, I had never encountered PMDD. I was horrified.’
PMDD – premenstrual dysphoric disorder – is a hormonal condition that causes intense mood changes, along with emotional and physical symptoms, in the weeks before a period begins.
It is often confused with premenstrual syndrome (PMS). But while PMS is very common – causing irritability, low mood or physical discomfort in the run-up to a period – PMDD is a distinct psychiatric diagnosis.
Symptoms are far more severe, ranging from overwhelming anxiety and rage to feelings of hopelessness or even suicidal thoughts. Unlike PMS, PMDD is classified as a mental health condition, not simply a more extreme form of the same problem. It was first recognised in 1994 and was only added to the World Health Organisation’s diagnostic manual in 2019.
But PMDD affects as many as one in 20 women in the UK – a figure experts believe is underestimated as many GPs are still unaware of it.
In recent years, celebrities including former Coronation Street actress Helen Flanagan have spoken of their serious struggles with PMDD
And according to the International Association for Premenstrual Disorders, as many as one in three women with the condition attempt to take their own lives.
In recent years, celebrities including reality TV star Vicky Pattison, former Coronation Street actress Helen Flanagan and Married At First Sight contestant Kristina Goodsell have spoken of their serious struggles with PMDD.
But the condition is still little known, meaning tens of thousands of women slip through the cracks.
‘What happens is that women come in feeling really low, and the GP just diagnoses anxiety and depression – because that’s what they see daily,’ says Dr Raizada. ‘But questions around whether it could be related to her cycle don’t get asked.
‘And – as was the case for me – it can take years to finally get a diagnosis and treatment.
‘PMDD isn’t even on the NHS website – this is the problem we’re up against. The noise is all about menopause, but we need to see the same energy going into better training on PMDD.’
The mood and physical symptoms of PMS usually appear in the luteal phase – the two weeks between ovulation and the start of a period, when levels of progesterone and oestrogen rise to prepare the body for a potential pregnancy.
But in women with PMDD, the brain reacts abnormally to these hormonal shifts, disrupting the chemicals that regulate mood.
‘PMDD is related to PMS in the way that a major depressive episode is related to feeling a bit down,’ explains Dr Katie Marwick, a consultant psychiatrist and senior clinical research fellow at the University of Edinburgh.
‘To diagnose PMDD, we’re looking for serious depressive episodes every month, as well as significant distress in people’s functioning – whether at work or in terms of being able to care for people. As well as feeling low, women may feel more prone to anger, as well as experiencing changes to their thinking – finding it hard to concentrate or remember things.
‘Physical symptoms also appear – such as fatigue, changes to appetite or pain in the joints.
‘Women sometimes talk about having a Jekyll and Hyde personality – they find themselves behaving in ways that they don’t want to, but just can’t help it.’
The impact of this disruption – which can take up between a quarter and half of each month – can be devastating. ‘Suicidality is quite common,’ adds Dr Marwick.
Experts aren’t sure why some women are more sensitive to hormonal changes than others. Research from the US National Institutes of Health found those with PMDD carry an altered gene complex in the part of the brain that regulates responses to stress. Other studies suggest the condition is more common among women with a history of trauma, ADHD or close relatives with PMDD.
Dr Shirin Khanjani, consultant gynaecologist at University College London Hospital, says: ‘In historical medical texts, PMDD was often referred to as menstrual madness or hysteria. But it’s always been there in the medical literature.’
And despite growing recognition, women can still wait over a decade for a diagnosis.
Researcher Dr Thomas Reilly, of the University of Oxford, wrote: ‘Patients often find themselves falling through gaps in clinical services, such as between gynaecology and mental health.’
At Dr Khanjani’s PMDD-dedicated clinic at UCLH – one of only a handful in the UK – most of the women spent years being referred to different specialists before reaching her.
‘They tell me they don’t recognise themselves – they feel as though they’ve been taken over by someone else,’ she says.
‘Some are worried they’re going to lose their jobs, or ruin their relationship.
‘They’ve been suffering in silence for years.’
Dr Raizada says that one patient who attended her practice was even misdiagnosed with bipolar disorder and detained under the Mental Health Act before discovering she had PMDD.
And it’s not just doctors who are missing the signs. A survey of British adults this year showed 40 per cent had never heard of PMDD, while 28 per cent had heard of it but didn’t know what it was.
This was the case for mum-of-one Alys Golding, who spent three years believing she was suffering from a particularly bad bout of post-partum depression.
She says: ‘I’d probably had it ever since I got my first period, but I went on the Pill as a teen for many years, and only came off it right before I got pregnant with my daughter.’ After her daughter was born, however, Alys, an office administrator from Swansea, noticed that the mood swings she experienced in her teen years were returning.
‘I was told I had post-partum depression by my GP and I was put on antidepressants, which didn’t work for me at all.
‘It was confusing, because I wasn’t depressed so much as angry – I would go into rages over the littlest of things.
‘I began to think maybe I was bipolar. I could sense there were times when I felt normal and times I felt really bad. It got to the point where every month I would ring up my doctors in tears because I’d had a rage that I’d taken out on my loved ones.
‘I didn’t feel like a horrible person who likes to shout at her small child or lash out at her parents. I couldn’t understand why I would do it.’
It wasn’t until three years later that a new GP – the fifth Alys had sought help from – told her that it sounded like PMDD.
Alys says the relief was overwhelming: ‘Someone finally acknowledged I wasn’t going crazy – but getting anyone to listen was really tough.’
Once diagnosed, PMDD can be treated in several ways. Regular exercise and cutting down on processed food can help regulate hormones, says
Dr Khanjani. ‘Supplements such as vitamin D and iron, exposure to daily sunlight and minimising alcohol intake can also be incredibly helpful.’
For women who don’t respond to lifestyle changes, medication is often the next step. Between 60 and 70 per cent respond to antidepressants, according to the US National Institutes of Health. Unusually, many women with PMDD need to take them only during their luteal phase.
Dr Marwick adds: ‘It goes against what we know about treatment for depression, but we’ve seen that antidepressants work differently for PMDD.’
Other treatments aim to stop hormone fluctuations altogether, such as the combined oral contraceptive pill or gonadotropin-releasing hormone agonists, which suppress oestrogen and induce a chemical menopause.
But these may also affect libido and mood, sometimes requiring hormone replacement therapy.
In rare cases, women opt for surgery to remove their ovaries or womb.
‘Menopause is really the only cure,’ says Dr Marwick.
Dr Raizada adds: ‘If your GP is your trusted person, and you go to them with your symptoms and are told that you’re just being sensitive, it can be embarrassing.
‘I’m a GP myself, and even I felt like that.
‘Change will only happen if we have better training about PMDD for primary care physicians and medical students.’