People Don't Know Shit About PCOS
I have PCOS and I might be in perimenopause--the best of times!
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I had my annual gynecological exam this past week (so fun!) and I finally got my doctor to admit to things I’ve been asking about for the last several years.
For years I have had a variety of symptoms pointing towards PCOS (Poly Cystic Ovarian Syndrome) and only about four years ago did my doctor say, “Yeah, you probably have PCOS.” I advocated for actual testing, because I don’t like assuming I have something when I don’t (I do this often enough as someone with sensory issues and health anxiety). I had a vaginal ultrasound that showed no cysts, one tiny fibroid, and “Polycystic ovarian morphology (PCOM) with antral follicle count bilaterally.” That last part means I meet the criteria for PCOS. I had various hormone things tested and all were within the “normal” range, even my Testosterone, which is typically elevated in people with PCOS. My DHEA-Sulfate (a steroid hormone that is produced by the adrenal glands) is at the high end, but still within normal range. I’ve had thyroid testing and that is normal, too. Unlike a lot of people with PCOS, I get my period (mostly) like clockwork.
Like a lot of things in my life: I’m on the cusp. I’m not a clean-cut presentation of PCOS, but it’s the thing that makes the most sense.
PCOS is poorly named. Not everyone who has it has cysts (I don’t) and it doesn’t just affect the ovaries. This syndrome affects the entire body. It really should be called “Metabolic Syndrome.” Also, there are four different types of PCOS. They are: 1) Insulin-resistant PCOS, 2) Inflammatory PCOS, 3) Adrenal PCOS, and 4) Post-Pregnancy PCOS. Some people can have a mix of these types.
At this year’s annual appointment, I asked whether my doctor thought I might have insulin resistance, since many people with PCOS do. She replied: “Oh, yes, definitely.” She has never mentioned this before. I’ve had no glucose testing done since 2021 (and it was normal then), so I’m taking her word for it. I have wondered about it since I seem prone to hypoglycemia, and eating sugar and too many carbs (my favorite things) never make me feel great. I’m now trying to function with the assumption that I do have insulin resistance, at least some level of it, and so I need to change my diet. She also mentioned that I could be perimenopausal, something I asked her about last year which she vehemently denied. I’ll be 39 in December, so maybe that’s why she’s finally telling me this. Aging is a trip.
My gyno is far from perfect, but she’s one of the few good ones out here locally and I’ve seen her for over a decade now. I more so blame US healthcare for how carelessly patients are or are not pathologized. Doctors and nurses are tasked with seeing far too many patients in a day and can’t possibly give everyone good or even great care in this current system. It’s infuriating.
I’m annoyed that the only “approved” medication for PCOS currently is Metformin, which, from what I’ve read, makes you shit your brains out daily for a while (and for some people, it doesn’t stop until they quit the medication). I’m not willing or able to try Metformin at this point, so I’m focusing on dietary changes for the time being. Interestingly, GLP-1 Agonists (Ozempic, Zepbound, Mounjaro) are showing potential effectiveness for folks with PCOS, however, most insurance companies don’t cover these medications for PCOS alone yet. You have to have diabetes to qualify. I’m not sure I would go on these meds if I did qualify, because again, the side effects terrify me. Metformin, on the other hand, has been around for 60 years and has countless research studies on its effectiveness and safety. It’s not a great medication, but it’s a safe one (for the most part).
Either way, I’m first going to PCOS-ify my diet and see if that helps alleviate my symptoms.
I have been investigating and researching PCOS for a few years now, and what I find truly abhorrent is the lack of care this syndrome receives. Many doctors still seem to not know anything about it or act like it’s not a big deal. I’m also side-eyeing the wellness grifters who are creating and selling a variety of (potentially unsafe) supplements. Like many people with various diagnoses, those who have PCOS are doing all of the labor to figure out what to do that will work for them. Wellness grifters know this and take advantage of it because of capitalism. It’s predatory and it’s disgusting.
Before this devolves into a completely different piece about wellness grifters, here are some books that have helped me navigate PCOS:
If you have PCOS, I would love to hear what has worked for you and what hasn’t in the comments!
The power of self-witnessing in chronic illness -
The toll of bearing witness to genocide -
A Plea to Maskless Healthcare Workers from Vulnerable Patients -
My 2007 Interview With Ursula Le Guin -
Your Supplements Will Not Save You -
How Organizing Led To Youth Decarceration -
Where Did Our 2004 Photos Go? - Allison Johnson
Scarlett Johansson Wants To Be The Next Kylie Jenner -
love me some Midwife:
Oh wow, somehow I am just now seeing this! Firstly, thank you so much for including my writing - it really means a lot to me ❤️ And second, as someone who has severely experienced PCOS in the past, and also as a midwife/acupuncturist/holistic health practitioner who works with clients who have been burned by the mainstream ways that PCOS are "managed", this essay hit so hard. Thank you for speaking to the complexities and to the absolute idiocy/cruelty of the medical industrial complex.
good 🙃🙃🙃🤗🤗🤗😘😘😘😍😍😍🥰🥰🥰