Today is Menstrual Hygiene Day, a day to raise awareness of the challenges menstruators face worldwide due to their menstrual cycle. This years slogan is "Menstruation Matters to everyone, everywhere," and I'm gonna tell you about some of the reasons it matters to me.
One of the best things you can do for yourself as a menstruating human is track your cycles. There are a variety of smart phone apps to do so, but you can also track your cycles the old fashioned way using a calendar or planner. It's important to know what's normal for you, when things change, and have data to bring to your doctor if you're having period problems.
I've used several period tracking apps, and found that Clue has been my favorite. They are actually collecting user data to further menstrual health research, an area seriously lacking in funding and data. I was recently named as a Clue Ambassador for menstrual and reproductive health, which empowers me to talk about periods even more than I already do. Please feel free to #AskMeAboutMyUterus.
Thanks to tracking apps like Clue, I've been able to find patterns in my symptoms, and figure out the relationship my menstrual cycle has to the rest of my complex chronic illness. The data I gathered from tracking my symptoms and cycle were directly responsible for finally getting a correct diagnosis of Premenstrual Dysphoric Disorder (PMDD), after a misdiagnosis of Bipolar II.
The menstrual taboo is wrapped up in so much stigma, and is directly related to many other highly stigmatized physical and mental health issues. PMDD is a perfect example of this; we're told it's normal to get "moody" before and during our periods, but anything beyond mild moodiness gets labelled "crazy." Whether a person is experiencing PMDD, a mental illness, or some combination of the two, telling someone they are just being moody or crazy is not helpful. Getting misdiagnosed with the wrong condition is not helpful, and getting treated for the wrong condition usually isn't particularly helpful either. Better understanding of menstrual disorders, and how they interact with the rest of the body AND mind is desperately needed.
I can't stress enough how badly we need more research into this stuff, and how important it is for those of us who have period problems to participate in research. As I mentioned above, using Clue is a great and very low key way to contribute, but there are other ongoing studies into various menstrual health issues. I am currently enrolled in The ROSE Study, which is looking at genetic factors that may contribute to Endometriosis, and hopefully identify subtypes and biomarkers for better, faster, and less invasive diagnostics.
A lot of people have the assumption that medical research involves taking potentially risky medications or other relatively untested treatments, but in many cases, we're still just looking for basic information and are a long way off from any actual treatments. For example, for the ROSE Study, all I had to do was fill out a couple surveys, spit in a test tube (to collect genetic material), and mail them my period blood! Ahem, excuse me, "menstrual effluent."
The stats above are for "normal" periods, and really only touch on the time we spend bleeding. But for many of us with period problems, menstrual related symptoms can take up most of our months, and take so much time away from us. Friend of the podcast, Abby Norman, recently calculated the time she's lost to Endometriosis, and made a conservative estimate of 288,000 hours. I can't math, but the hours I've had affected by and lost to PMDD and "likely" endo is definitely somewhere up there as well.
#MenstruationMatters to me because it affects my quality of life significantly, the stigma surrounding it has affected me directly, and I am not alone. PMDD, Endometriosis, and PCOS each affect around 10% of people of menstruating age, and while we have some treatments, our options aren't great, and we deserve better.
I was supposed to talk about this stuff on a panel for Periodic, Inc's PDX Red Party celebrating Menstrual Hygiene Day, but technical difficulties threw a wrench into those plans. But pre-recorded video answers to the prepared questions will be available soon!