‘Dismissed and gaslit’: The women with premenstrual dysphoric disorder struggling to get a diagnosis

From bipolar to a personality disorder and complex post-traumatic stress disorder, Becci Smart’s life has been plagued by misdiagnosis. After 18 years of being “dismissed and gaslit” by healthcare professionals, she was eventually diagnosed with premenstrual dysphoric disorder (PMDD) in 2019.

It comes as new research from the University of Oxford found around 31 million women and girls around the world have PMDD - with around two per cent of women and girls experiencing the condition - although the true numbers are expected to be higher.

PMDD is a more severe, debilitating form of premenstrual syndrome (PMS) - with psychological and physical symptoms which range from anxiety to depression, mood swings, joint pain, struggles to concentrate, breast tenderness, headaches and insomnia.

“I have got a list as long as my arm of misdiagnoses,” the 36-year-old, who lives in Bridgend in South Wales, tells The Independent.

“I was told it was just teenage angst and then I was told it was depression and anxiety. I was labelled ‘a troubled teen from a broken home’ by a doctor and then I was told it was just exam stresses; and then it moved back to depression, anxiety and postnatal depression; and then it went further and it was bipolar disorder, a personality disorder, and complex PTSD.”

Ms Smart explains she began getting PMDD symptoms when she was around 14 years old - adding she becomes overwhelmed with physical and psychological symptoms when she ovulates.

“As soon as I ovulate, it is like this entity has taken over me,” she adds. “I am a completely different person. It is like all the colour has drained from the world. I don’t recognise myself. I hate people. I can’t stand to be looked at. I am extremely sensitive to sounds and smells. I can’t stand the light.”

She says she has tried different treatments provided by her GP - ranging from antidepressants to contraceptives and herbal remedies but nothing has worked. “Now I am in a chemically induced menopause,” she adds. “It is working but mentally it has been a horrific struggle.”

Ms Smart, a student training in health, wellbeing and social care management, recalls how she eventually got a diagnosis of PMDD after going to see her GP when she “hit rock bottom” and started feeling suicidal.

“She had specialist training in women’s health,” she adds. “She said: ‘I don’t think you have got any of these other diagnoses you have been given. I think you have PMDD’. Nobody told me it wasn’t normal to feel suicidal before your period.”

The new study, published in the Journal of Affective Disorders, discovered a significant proportion of women and girls - some three per cent - had a provisional diagnosis of PMDD. This relates to those cases where the condition is suspected but symptoms have not been assessed for long enough to issue a formal diagnosis.

"It can be difficult for people to obtain a diagnosis of PMDD,” Dr Alexis Cullen, a senior report author, explains. “This is largely because the disorder has only been recognised relatively recently and so healthcare professionals may lack the knowledge needed to recognise the symptoms and make a diagnosis. A further complication is that many of the symptoms of PMDD overlap with other mental disorders and physical conditions, and so PMDD can easily be mistaken for another disorder.”

Dr Cullen, who has moved on from Oxford University to the Karolinska Institute in Sweden, says many women will be living with undiagnosed PMDD, unaware the condition even exists. “Most people have heard of PMS (premenstrual syndrome) but are not aware that there are some individuals who experience severe emotional and physical symptoms that can be extremely disabling,” she adds.

Researchers analysed data from just over 50,600 female participants in 44 studies spanning six continents.

“It is vital that we invest in comprehensive research and public health strategies to address and manage PMDD, ensuring that these millions of women do not face their struggles in the shadows,” Clare Knox, who co-wrote the research and has personal experience with PMDD, says.

Research by the International Association for Premenstrual Disorders has found diagnosis of PMDD takes an average of 12 years, as well as finding around a third of those who have been diagnosed with the condition have tried to take their own lives.

PMDD was added to the International Statistical Classification of Diseases and Related Health Problems by the World Health Organisation back in June 2019.

“There is little training around PMDD for psychiatrists or indeed medical students,” Dr Thomas Reilly, of the Department of Psychiatry at Oxford University, says. “Patients often find themselves falling through gaps in clinical services, such as between gynaecology and mental health services. GPs’ knowledge about PMDD is also very variable. In psychiatry, we rarely consider whether a patient’s symptoms might relate to hormonal changes.”

Rachel Fosset, another sufferer, says her PMDD generally manifests with more physical than psychological symptoms. "You are bedridden,” the 52-year-old adds. “You can’t move, life is on hold. It can be nausea, it can be extreme fatigue and feeling like your thighs are not supporting your body, they turn to jelly, achy bones, and nerve body pain. You can be more irritable for a couple of days, you doubt your ability to think, you can take things people say the wrong way, and have hypersensitivity to noise and sounds.”

Ms Fosset says she diagnosed herself with PMDD after reading someone’s personal testimony about the condition on a Facebook group in 2022. She explains she has long struggled to get a formal diagnosis for PMDD as her gynaecologist is apprehensive about diagnosing her while she is on hormone replacement therapy - adding she has encountered many healthcare professionals who have never heard of PMDD.

“I am in chemical menopause which has helped in some ways but it has also unleashed a whole set of new symptoms and I am awaiting a hysterectomy,” Ms Fosset adds. “But the nerve problems have gone and the nausea has gone and the doctor said ‘you seem like a different person’ compared to how I was before.”