Premenstrual dysphoric disorder (PMDD) is a cyclical mood disorder impacting 5.5% of individuals assigned female at birth (AFAB) of reproductive age. PMDD is distinct from Premenstrual Syndrome (PMS) due to its severity and debilitating mood symptoms, which typically arise during the 2-week luteal phase of the menstrual cycle that precedes menstruation. PMDD is believed to be an atypical reaction to normal hormonal changes that occur as part of the menstrual cycle.
In a recent study, interviews with 10 people living in Canada who experience PMDD revealed key information about how PMDD is experienced and treated within our current social and medical systems.
The PMDD cloud
Participants in the study described PMDD as a heavy, foggy cloud that brought intense self-doubt, heightened sensitivity to rejection, and a deep sense of worthlessness. Overall, a deep-seated feeling that “everything sucks” was endured by many participants, and—especially alarming—each described experiencing suicidal ideations.
Another distinct aspect of the cloud that was detailed by the participants was physical heaviness and suffocation. Symptoms included headaches, bloating, joint pain, breast tenderness and swelling, stiffness, digestive discomfort, and vertigo. Among the participants in the study, there was a consistent mention of debilitating fatigue, with a complete lack of energy making it difficult or impossible to complete daily tasks. One participant, Vanessa, stated, “it’s like a deep in my bones tired of just not being able to think straight or function or get anything done.”
Participants also discussed feeling “trapped” by the anxious pressure of the PMDD cloud. As Callee explained, “it just feels like a pressure … you’re kind a screaming into a cloud and it’s not going anywhere.” Amy compared it to being “stuck in mud,” while Anna said, “I feel out of control because I’ve been in bed for 12 hours and I can’t make myself not be in bed.”
The calm before the storm
As the symptoms subsided, participants in the study described a shift back to what they identified as their true selves. For some, this shift happened right at the start of their period, while others experienced it a few days into menstruation. As Amy, one of the participants, conveyed, “everything’s lighter and everything is more manageable and yeah, the world is a better place.”
Participants described PMDD as a heavy, foggy cloud that brought intense self-doubt, heightened sensitivity to rejection, and a deep sense of worthlessness… and—especially alarming—each described experiencing suicidal ideations.
Serena Habib
However, this part of the cycle involved overcompensation for time lost paired with anxiety, anticipation, and preparation for PMDD to begin again. Anna, another participant, shared that she would do “twice the readings in the first two weeks” of each month for school, whereas Callee explained, “I’m almost preparing to be someone else and to not be able to live the way I live or think the way I think or do the things I like to do”. While participants often found themselves more productive than their peers during this time, the cycle of overcompensation was unsustainable. Additionally, planning major events around PMDD cycles proved to be impractical.
Misdiagnoses
Many participants lived most of their reproductive lives without understanding their cyclical patterns and instead internalized the blame. For instance, Kathy was diagnosed at age 44 after living with PMDD since the age of 12. She said, “I remember just being in the pits of despair. … I found a PMDD subreddit. And I read through all the symptoms and I’m like … this is me.” Kathy had been diagnosed with depression and anxiety,and assessed for bipolar disorder. She explained, “no one ever suggests PMDD … you’re just sad.” Jill thought she had been experiencing burnout until she started using a period app and noticed the symptoms only surfaced 7 to 10 days prior to when she would menstruate.
Anna was malnourished due to her lack of energy during PMDD. She was diagnosed with an eating disorder despite having consistent and normal eating patterns during the rest of the month. When the cycle continued, Anna was told she was “not trying hard enough” in her eating disorder recovery.
Credit. Author
As Amy explained, “They never believed it was PMDD”. Misdiagnoses and ignorance of healthcare professionals are common experiences for those with PMDD, but what was worse for these participants was that opportunities for treatment remained unavailable even after a formal diagnosis of PMDD.
Mistreatment
Not one participant found a practitioner to support them through this process and guide them through the recommended treatments. It was clear that providers did not follow the treatment guidelines published on PMDD, as participants were often “sold” the birth control pill, which seemed to them as a quick fix; however, many inappropriately prescribed medications can exacerbate symptoms. Participants also consistently described being medically gaslit, as many healthcare providers refused to listen to participants when it came to their experiences, symptoms, or knowledge of their own bodies.
For instance, Anna, who went on Lupron [chemical menopause] as suggested by her doctor, then experienced kidney infections. Her gynaecologist told her it was unrelated to Lupron, regardless of there being a warning for renal failure published on the Lupron website. Her infections cleared as soon as she stopped taking Lupron, and her bloodwork returned to normal. Christina’s concerns surrounding PMDD were continuously dismissed, and she was told to “just take birth control.” Amy’s own research-backed knowledge of her body was ignored until her husband accompanied her to her appointment. These stories reveal how menstruating bodies are not only dismissed but also discriminated against within healthcare.
There was a collective sense of asking for help and bringing options to providers, only to constantly be turned away. Kathy explained the pain of this process, stating, “There’s nothing worse than wanting to die. Nothing, nothing. And not feeling like anybody is hearing what you’re saying.”
Misunderstanding
While navigating PMDD, participants constantly faced invalidation regarding their symptoms, which were attributed to being “normal” PMS. Anna said, “I get the ‘don’t pathologize women,’ but if a woman wants to kill herself before her period, no that’s not normal.” Callee, who did not experience PMDD symptoms until the birth of her second son, described the tangible difference between PMDD and PMS, which tends to be unknown: “I’ve had a period since I was in grade nine and I know what it feels like to have the regular emotional up and down before a period. This is not what that feels like. It’s not that at all.”
Many participants feared being deemed “crazy” or “out of control” and were concerned about how they would be perceived if they shared honestly about their experiences. Christina said, “I think it feels like a weakness because it’s related to being a woman and feminine. Like it’s such a trope in society… I don’t want to be seen as somebody who’s volatile and out of control because of my hormones.”
Invisible suffering
Since 90% of participants had not found relief through treatment, many had to make massive adjustments to their lifestyles. For instance, concealing PMDD symptoms was very common, even in intimate relationships, and hiding these intense feelings was exhausting. However, there appeared to be no space for PMDD to be openly discussed due to social assumptions and misunderstandings of the condition. Accommodation(s) in schools and workplaces were generally denied since participants did not always need them and because academic or career performance did not always get impacted.
Moving towards a future where those with PMDD can thrive
There is no one-size-fits-all approach to PMDD management. Given the lack of provider knowledge and social awareness regarding PMDD, it is essential that an individual’s lived experiences and knowledge of their bodies are centred in clinical, academic, social, and institutional contexts.
The authors of the study call for higher-quality care by providers who are willing to support and guide their patients through various options, until the patient can reach their desired quality of life and can thrive. It is vital to listen to the patient when it comes to side-effects and their experiences with different treatments, even if these experiences are unfamiliar or unique. Similarly, within institutional settings, a lack of understanding of PMDD should prompt a collaborative discussion and a plan to support people with PMDD.
They also invite readers to learn more and advocate for better care, directing them to the Canadian Premenstrual Disorders Association and the International Association for Premenstrual Disorders for further information and involvement.
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Journal reference
Habib, S., Bailey, K. A., & Griffin, M. (2024). Off-Label: Lived, Embodied, and Temporal Experiences of Premenstrual Dysphoric Disorder (PMDD) in Canada. Women’s Reproductive Health, 1-20. https://doi.org/10.1080/23293691.2024.2436925
