This week, I read a book and listened to a podcast that made me sad for my younger self, but hopeful that things are (mostly, maybe) changing for the better for today's young girls/people who menstruate.
The book was
Period. End of Sentence.: A New Chapter in the Fight for Menstrual Justice by Anita Diamant (if that name sounds familiar, she wrote
The Red Tent so apparently she has a theme). If the title of the book sounds familiar, there was
a short documentary with the same name, connected with
The Pad Project, that won an Oscar in 2019 and is available on Netflix. The book was inspired and connected to the film, with a Foreward by Melissa Berton, an English teacher who is the founder of
The Pad Project.
It's a really great book. I learned SO much. It explores the stigma behind periods, indigenous rites of passage that were squelched by colonizers, how people are addressing period poverty in the U.S. (1 in FIVE girls experiences it) as well as globally. I learned about early period products: I had no idea that the first commercial menstrual cup was invented in 1937 by an actress named Leona Chalmers, so it's not a new thing (although it fell out of favor for decades). Tampons became commercially available in 1931, but with all sorts of misinformation about how they break the hymen and make you not a virgin (what?!?!) or promote promiscuity (oooh, don't you feel so sexy and turned on when you're changing tampons? RIDICULOUS). I learned that in prison, most period products are available in the commissary, which means you have to have money, and if you don't, and your makeshift TP pad leaks blood onto your uniform, you can be in violation of rules about uniforms and LOSE ACCESS TO THE COMMISSARY. WTF. There's the (completely logical) thought that if toilet paper, soap, and paper towels are provided for free in public restrooms, why on earth wouldn't period products also be provided, since they are a NECESSITY and not a luxury item? Also, that there should be no separating by gender for health discussions about puberty, because boys should learn about menstruation so they don't think it's unmentionable, and girls should learn about nocturnal emissions so it's not a mystery, and trans youth should not be put in the position of deciding which class to go to. I thought that practice wasn't happening any more, but I guess, per the book, depending on where you live it is still very much the case that boys learn about boys and girls learn about girls and everything is shrouded in mystery and shame.
My favorite part was a blessing in the Jewish faith for your first period (menarche):
A meditation for menarche before immersing
I welcome this stage of Womanhood with a mixture of
emotions.
I don't know what the future will bring or how this great change
in my body
will bring changes to other parts of my life. May I always respect
my body and the potential it holds.
I would love if someone could explain "immersing" to me in this context, but apart from that, I absolutely love that this blessing does NOT assume that a period means children. I absolutely love "I don't know what the future will bring" as opposed to "every period is a potential for life and will bring children/a baby/pregnancy." How refreshing. How amazing. I love that potential is in there, but it can mean many different things. So, it's not setting you up to believe that period = fertility. Because...it doesn't. Clearly.
Which brings me to the podcast that I listened to,
This Podcast Will Kill You, and the episode (181) on PCOS (polycystic ovarian syndrome). Entitled
PCOS: Beyond the Cysts, it delves into what PCOS is, what we know about it, what (sad and shoddy) treatment there is, and longtime impacts. It is so well researched, and I absolutely loved that the intro, which is always a first-hand account, was a story told by a trans man -- not the PCOS story you often hear! The hosts are two women named Erin, who are disease ecologists and epidemiologists, and one is a family medicine practitioner.
One of the Erins (Allmann Updyke) started by saying that she was diagnosed with PCOS, and in researching this episode found out all kinds of things that she did not know, and that she will use as a primary care physician moving forward.
They talk about how the cysts mentioned are not necessarily the kind of giant ovarian cysts that burst, but the "cysts" that are follicles in various states of development that arrest before they are released. They also talk about how it is not an ovarian disorder, it's an ENDOCRINE disorder. Which means, it impacts so much more than fertility, which is usually when diagnosis happens. Grrrr. There are lifelong consequences: propensity for Type 2 Diabetes, higher risk for stroke, higher risk for heart attack, higher risk for obstructive sleep apnea. How interesting to find that my high cholesterol and high lipid count are likely thanks to my PCOS! How infuriating that my diagnosis didn't come with that information, and nobody seemed to give a crap about it once I wasn't trying to get pregnant!
So, my diagnosis didn't come until my fertility workup at 33 that involved discussing how a) my period is wildly unpredictable and without birth control could happen only 2 times per week and last for EVER and be super heavy and painful, and b) my ovaries looked like "chocolate chip cookies" and had tons of follicles that had started and then paused. Which meant that IUI was difficult, because PCOS tends to respond very enthusiastically to fertility injectibles that make lots of follicles mature since some have a head start. Also, apparently that doesn't mean that egg quality is awesome, probably because of the follicles that were paused, which is probably why once we did IVF I had 20-something follicles and retrieved eggs in the high teens to 20s, but then only 3 or less were typically mature and viable, which is super confusing and disappointing when the initial news is YOU'RE AN EASTER BUNNY!, an actual statement by one reproductive endocrinologist in my journey. Sigh. I always wondered why it was a Great Whittling, from zillions of eggs to very few that would fertilize. I guess I know more now.
Meanwhile, my entire early days of my period were a nightmare because of the unpredictability, heaviness, and length. Counting did not work. Ever. And, as I learned in the podcast, within the first 3 years of your period starting, it's typical for your period to be irregular. But after 3 years, if it's still irregular, it is a red flag (haha, red flag). For me, it was interpreted not as a medical issue, but a character flaw. I couldn't track properly. I wasn't prepared. I was lazy and inattentive. When actually, I joked about my "immaculate miscarriages" since I was absolutely a virgin until college, but if I wasn't, what a stressful time that would have been. I finally got on birth control before going off to college, and for the first time I could predict my period (although I definitely had breakthrough bleeding and horrible periods didn't end, which was likely because of the adenomyosis discovered when I excised that uterus in my 40s).
Meanwhile, I had embarrassing leakages, ruined many a pant/short/skirt/underpant, and once bled through my shorts to the point that I left a puddle of blood in my chair while taking my Physics Regents my senior year because they wouldn't let me go to the bathroom more than once during the 3 hour test. I was punished while on a cruise vacation for my (ill advised) rage at my mom when she berated me for not bringing tampons and said it was my fault (natural consequence) that I was missing an aquatic preserve that I had so been looking forward to because my period chose THAT MOMENT to arrive. I mean, the rage was I whacked my mom with a wet swimsuit while screaming THIS ISN'T MY FAULT!!!, which could have been handled differently by 17-year-old me, but also... IT WASN'T MY FAULT. I was given very little compassion until I was on the Pill and had a pretend regularity that could be depended on.
Pretend, because it hid my PCOS until I tried to get pregnant in my 30s. Getting put on the Pill takes care of symptoms, but it DOES NOT CURE THE DISORDER. And, in fact, it masks it, leaving you unwitting about all the health concerns and the infertility aspect.
For instance, before the podcast I did not know that because your lining builds up and then isn't expelled thanks to the reluctant-to-release eggs, you are at higher risk for endometrial cancer because that tissue just sits stagnant and has a greater chance of changing. Well, more reasons to be grateful that I got a hysterectomy and removed that nasty uterus. Literally, NO ONE has ever mentioned the cancer risk to me. Which I would think would be important information to have.
Also, I have been told how my BMI is too high (the Erins hate BMI, and SO DO I, it's a terrible measure, invented by a man), my cholesterol is too high, my lipids are too high, and I need to lose weight. I am not a tiny person, but I am not a large person either. I walk and do Pilates and I don't eat a lot of crap. I have ALWAYS had belly fat, even when I was a teenager running track who weighed 120 pounds. While I can influence things to a point, it is ridiculously hard to make significant change in that arena because my body just doesn't change all that much (even less now that I'm in perimenopause). Oh! Isn't it interesting that that's probably in part due to my PCOS! It makes a lady real mad.
No one has talked about the possibility of taking metformin, or that insulin resistance could be a culprit, either. It's like women's health is largely ignored and maladies are too often subscribed to personal choices. Harrumph.
This is why I love the Erins. They are trying to move that dial. They cover all kinds of topics, and speak loudly about the need for research in women's health and including trans people in the conversations as people with ovaries and people who menstruate.
Between the two -- the book and the podcast -- I was left feeling hopeful that periods are being more frankly discussed with less shame and that more information on PCOS is being put out and discussed openly. I wish that there was more knowledge and less shame when I was growing up, but I'm so glad that things will hopefully be better for young women/menstruators today.
