Little is known about the Premenstrual Dysphoric Disorder but it’s a condition that affects more than a million women in the UK. At the start of Mental Health Awareness Month, we explore its effects and talk to women whose lives have been blighted by it.
What is PMDD?
Premenstrual Dysphoric Disorder, known as PMDD, is a hormone-related mood disorder that impacts one in 20 women.
The cause of this cyclical condition is an intense sensitivity to hormonal fluctuations. This sensitivity triggers episodes of depression, rage, anxiety and sometimes suicidal thoughts that typically begin one to two weeks before a period and only stop when menstruation begins.
The problem with diagnosis
PMDD remains underdiagnosed and frequently misunderstood within frontline healthcare.
Julie Riddell, a research fellow at the University of St Andrews, says the condition continues to fall between medical specialisms. “Our health services are incredibly siloed,” she says. “You see a GP for mental health, a psychiatrist for mood, a gynaecologist for hormones, but none of them are speaking to each other.”
Without a clear pathway for help, patients are passed between services without a main point of responsibility over their care.”People are bounced between primary care, mental health services and specialists with nobody taking ownership,” Julie explains. “During that time, they can lose jobs, relationships, even their lives. We hear from women who’ve attempted suicide over and over before anyone realises the pattern is hormonal.”
This repetition is often missed clinically. Patients’ symptoms are reviewed one-by-one rather than over time – a system that means cyclical nature of PMDD is overlooked and the condition becomes harder to diagnose long-term.
Patient experience
Sarah Tyrrell, 45, from Derbyshire, first noticed her symptoms in 2022. “I just felt really suicidal for one day,” she says. “Then I’d wake up and be in shock. Then it passed.” At first her symptoms seemed isolated but they soon developed into an ongoing cycle that began the two weeks before her period.
‘You feel like you are
literally going crazy’
Sarah repeatedly looked for help but was given different explanations every time she reached out. “It was everything. Depression, anxiety, menopause, even my job,” she says. “I knew it wasn’t that.” The lack of answers worsened Sarah’s experience as her symptoms intensified and began to affect her daily life.
Her symptoms followed a consistent pattern. “For two weeks of every month, my life just exploded,” she says. “You feel like you are literally going crazy.” Despite this cyclical pattern she was not asked about her menstrual cycle during appointments.
Sarah struggled to understand what was wrong for two years until a doctor finally mentioned PMDD.”The doctor asked me how I feel when my period starts. I said it’s weird, I feel like myself again. That was the first time anyone had made that connection.”
The diagnosis brought Sarah relief but it came after more than two years of dismissal. “I think I was lucky,” she explains. “It took about two years. It’s still a long time. That’s 24 cycles experiencing it. It’s relentless.”
Compared to other women suffering from PMDD that Sarah has met, she sees herself as fortunate despite the length of time her diagnosis took to achieve.
Documenting and data
Research led by Riddell shows that many patients spend years in mental health services and according to the PMDD Project, the average time for an accurate diagnosis is 12 years.
The treatments offered to women often focus on depression or anxiety rather than the hormonal trigger that causes PMDD, meaning that symptoms will continue until they are treated properly.
Even when PMDD is identified clinically, it is not always recorded properly in data. “If someone presents at A&E or at their GP, the episode might be entered as severe PMS, emotional instability or depression instead,” Riddell says. “If it isn’t coded as PMDD, it doesn’t exist in the data and if it doesn’t exist in the data, it doesn’t exist in policy.” This lack of accurate documenting stops research, funding and the planning of appropriate care for women who are suffering.
The lack of recognition of the condition affects support at every clinical level.
The severity of symptoms
PMDD is strongly linked to suicidal thoughts and behaviour and according to the National Library of Medicine, women who have PMDD are seven times more likely to attempt suicide but there is no consistent pathway for their care during a crisis. Patients can show up at their lowest, only to be treated for general mental health conditions and then sent away without any further support.
“Sometimes in a crisis, people with PMDD will self-harm,” Riddell says. “They’re feeling their worst and the only pathway is A&E. Then they’re sent home and the cycle repeats.”
Living with PMDD
For Sarah the effects trickle into every corner of her life. “I get one normal week,” she says. “The rest of the time it’s like a black cloud.” This unpredictability has affected her work, relationships and ability to plan ahead, so much so that she now avoids making plans before her period.
“I’ve packed a bag and tried to walk out,” she says. “I’ve begged my husband to leave me.” She explains a loss of control and autonomy during these periods, where her thoughts and behaviours feel completely estranged from her usual personality.
Daily tasks can also become almost impossible. “I can look at a kettle and think, how do I switch it on?” she says. “I’m not making it up.” These mental symptoms aren’t as widely known as the emotional ones but can be as unsettling and isolating.
What needs to change?
Sarah urges healthcare professionals to change their outlook and the way they address women who present with these symptoms. “Just listen, if someone says they feel suicidal but it happens in a pattern, ask more questions. Ask them to track it.”
Riddell also agrees that small changes from clinicians could have a huge impact on the amount of women achieving a diagnosis and the time it takes to do so. “We don’t expect GPs to be experts in everything,” she says. “But we can teach them to ask the right questions. Not ‘How long have you felt this way?’ but instead ‘How often do you feel this way?’ That shift uncovers a pattern.”
As Mental Health Awareness Month begins, PMDD presents a huge gap in healthcare surrounding how hormonal conditions are understood and then treated.
For those living with the condition, the symptoms are relentless and cyclical.
The PMDD Project offers information, peer support groups and resources for people living with PMDD.
The Samaritans are available 24 hours a day on 116 113.