Pre-menstrual dysphoric disorder (PMDD) effects on average 1 in 20 women , and yet so little is understood about the disorder. It took me 12 years to get a diagnosis, but this is considered average (1). Why does it take so long? The problem is that general practitioners tend to have low awareness of PMDD and generally regard the symptoms as ‘bad PMS’. Although many of the physical symptoms are the same as PMS, a key difference is that people with PMDD will experience far more severe psychological symptoms. These include mood swings, a feeling of hopelessness, anxiety, irritability, feeling overwhelmed and difficulty concentrating. Due to these symptoms, people with PMDD are often misdiagnosed with personality disorders, anxiety, and depression.
PMDD arises from an abnormal response in the brain towards a normal monthly change in hormone levels pre-menstruation. A recent global study revealed that 34% of the 591 PMDD patients studied had made a suicide attempt during a PMDD episode. The severity of this condition makes it a public health concern, with the Global Burden of Disease Study (GBD) estimating PMDD to be 0.5 on a scale from “0” (perfect health) to “1.0” (death) of health loss from disease . However, only recently has this condition started gaining validation, with a landmark decision in May 2019 by the World Health Organisation to add PMDD to the International Statistical Classification of Diseases and Related Health Problems .
The condition can, in some cases, be improved with hormone treatments which are used for contraception; however, this is very dependent on the person and how they react to progesterone and oestrogen. Antidepressants such as SSRIs can help alleviate mood fluctuations when taken for the full month, or only during the luteal phase, which is the week before menstruation when symptoms typically arise. A last resort is using a GnRH agonist to induce a reversible menopause or having a hysterectomy.
Similar to the delayed recognition of PMDD, my personal experience exemplifies the challenges associated with diagnosis and treatment. At 17, I began experiencing PMDD symptoms, including heightened emotional sensitivity and uncontrollable crying spells during the luteal phase. A diagnosis eluded me for the next twelve years. However, this was partly due to good fortune in that the Implanon effectively managed my periods and most PMDD symptoms for seven of those years. What triggered my first period after seven years was surprising; eating papaya for breakfast every morning for a month, as unbeknownst to me, papaya has natural oestrogen-boosting properties.
The next five years were a whirlwind. Working on my PhD, I convinced myself it was normal to completely break down from overwhelm and be unable to function for hours, even days. I was incredibly harsh on myself, battling crippling imposter syndrome. My hormone treatments became a revolving door – no hormones, progesterone only, progesterone and oestrogen, then double progesterone. All in a quest to manage my health.
It wasn’t until last year, while working with Remap, that I realised these intense emotional episodes weren’t just stress or “bad PMS.” There had to be something more. I reduced my progesterone dosage back to the standard amount on my doctor’s advice, but my symptoms roared back worse than ever. Trying to work through them led to complete burnout.
Taking matters into my own hands, I researched my experiences and discovered PMDD. When I mentioned it to my doctor, they simply said, “Yes, it sounds like that’s what you have.” That was all it took for a diagnosis. My medical records documented my symptoms thoroughly, negating the need for the usual three-month symptom diary.
The diagnosis was a turning point. It validated my struggles and made me feel less alone. This is why I’m writing – to reach out to women and AFAB individuals experiencing similar symptoms without realising it might be PMDD. Additionally, raising awareness can equip friends, family, and colleagues to better understand and support those suffering from this disorder. Websites that I have found helpful include seeherthrive.com and iapmd.org, both of which have a wealth of information on diagnosis and management of PMDD.
My journey towards understanding and managing my symptoms is ongoing, but with exceptional support, I’ve seen a significant improvement in the past three months. My symptoms are lessening, allowing me to return to work without burning out every cycle. While it’s natural to want to push through and pretend everything is fine, accepting this debilitating condition, tracking my symptoms, and listening to my body has finally put me back on the path to a more normal life.
Sources:
University of the West of Scotland. First-of-its-kind research into severe hormonal mood disorder. Published 2022. Accessed April 10, 2024. https://www.uws.ac.uk/news/first-of-its-kind-research-into-severe-hormonal-mood-disorder/
BBC News. PMDD: Period-related condition causing extreme distress. BBC News. Published August 5, 2023. Accessed April 10, 2024. https://www.bbc.co.uk/news/uk-wales-66376351
International Association for Premenstrual Disorders. Global study reveals alarming 34% of people with menstrual-related disorder have attempted suicide. Published June 13, 2022. Accessed April 10, 2024
Eisenlohr-Moul T. Premenstrual Disorders: a primer and research agenda for psychologists. Clin Psychol. 2019;72(1):5
Halbreich U. The diagnosis of premenstrual syndromes and premenstrual dysphoric disorder – clinical procedures and research perspectives. Gynecol Endocrinol. 2004;19(6):320-334
World Health Organization. ICD-11 for Mortality and Morbidity Statistics. Published 2024. Accessed April 10, 2024. https://icd.who.int/browse/2024-01/mms/en#1526774088