PMDD Awareness Month has taken place each April since 2013 and has been growing in strength year on year - raising awareness and helping lots of people who were suffering alone, bringing them into a caring community, and giving them hope and answers.
PMDD is a debilitating condition, and we continue to focus the majority of our efforts on helping patients with PMDD–especially since this disorder has been recently codified as an international diagnosis in the medical community, which gives us a solid foundation for advocacy. However, we have come to appreciate that often those who suffer from premenstrual exacerbation (PME) of chronic psychiatric disorders (e.g., depression, bipolar, ADHD, PTSD), who are currently excluded from the PMDD diagnosis, are in serious need of our advocacy as well.
PMDD – symptoms arise premenstrually, subside within a few days of starting one’s period, and are not present in the week post-period.
PME – symptoms are present throughout the entire cycle, but become more severe in the premenstrual phase.
PMDD and PME – some symptoms are present throughout the entire cycle and worsen in the premenstrual phase. Some additional symptoms arise only in the premenstrual phase and subside around the time of one’s period.
All of these experiences are valid and deserve the right support and treatments - correct diagnosis is extremely important.
In many cases, those with PME experience the same degree of cyclical symptom change as found in PMDD, but show an overall greater severity of symptoms since their symptoms never completely go away in the follicular phase. On top of that, individuals with PME cannot currently access treatment for cyclical symptoms in many cases, despite the strong evidence that symptom change and mechanisms often overlap with PMDD.
Ultimately, cyclical symptom changes as found in PMDD and PME are not normal, and both are an active topic of scientific study. We believe that this work should be inclusive of patients with PMDD and PME, with a focus on how we can best define, identify, label, and treat premenstrual emotional changes most comprehensively and compassionately in the future.
While we are aware that most of us are familiar with being misdiagnosed with anything other than PMDD - we are now beginning to see people misdiagnosed with PMDD - when in fact they have another existing disorder (such as depression, anxiety) and are experiencing premenstrual exacerbation (PME) in the luteal phase., While some with PME are helped by PMDD treatments, others with PME aren’t helped by a PMDD diagnosis because it causes them to miss out on better treatment options that are targeted toward their other condition(s).
We are even observing those who have had no relief from the PMDD treatment plan and go on to have surgery (Total Hysterectomy with Bilateral Oophorectomy) for PMDD and to then discover they actually had PME of (e.g., Bipolar, PTSD, ADHD) which could/should have been treated differently. Before drastic measures are taken, those experiencing premenstrual symptoms should carefully track these symptoms prospectively and be open to the possibility of a diagnosis of either PMDD or PME of another condition.
This observation is echoed in research - as research grows around Hormone Sensitivities/Premenstrual Disorders and the potential subtypes - we have come to realize the equally immense need to provide support, education, and resources to all individuals living with Premenstrual Exacerbation (PME). Numerous studies and independent research have shown that as many as 49% of those self-diagnosed and medically diagnosed with PMDD may actually be living with PME of an underlying disorder. On the IAPMD Self Screen, 58% of 56, 386 responses showed as more likely to have PME than PMDD (this excludes those who were shown to be more likely to have PMS or 'other').
According to a recent international meeting of experts, both PME and PMDD can be categorized as “core Premenstrual Disorders”.
Rather than ‘taking away’ from PMDD Awareness Month, we view moving to ‘PMD Awareness Month’ as a positive move to ensure more people are finding out about Premenstrual Disorders and getting the correct diagnosis, support and treatment. Patients already have to do ‘trial and error’ with medications for PMDD - by incorrect diagnosis - this means more time and more time living through symptoms that could potentially be avoided.
We also want to make it clear that we understand why some people would be resistant or upset by the idea that they have PME rather than PMDD. Many patients report feeling dismissed by the idea of having PME rather than PMDD since this means that their problem is not yet an official diagnosis. This is understandable, although do remember that PMDD wasn’t an official diagnosis either until 2013, and it is important to fight to make sure that the experiences of real patients are reflected in our diagnostic and treatment systems.
Possible solutions to the current problem of PME exclusion may include either expansion of the PMDD diagnostic criteria to allow for greater flexibility of baseline symptom levels or the creation of a new diagnostic specifier that allows clinicians to indicate that a particular ongoing disorder is accompanied by premenstrual exacerbation that may require specific additional treatment.
Due to mental health stigma, some patients feel as though their symptoms must be ‘less biological’ if they are labeled “PME of depression” rather than “PMDD”. Of course, they are both equally biological and equally deserving of acknowledgment, compassion, and treatment.
Want to learn more? Book a spot at our upcoming webinars in April here >>