Why does everyone have PCOS?
+ 🚀 The official launch of MyAdvo's Peer Advocate Program!
Including me…Newly diagnosed with PCOS this month, a good girlfriend and I bemused why it feels like EVERYONE has PCOS right now? Are we just talking about it more on social media? Have we gotten better at diagnosing it? Is everyone just getting off birth control at the same time? Are doctors more in the know? What if we’re all just getting sicker?
The irony is that upon quickly polling the women in my life, I actually only know a couple girlfriends with PCOS and most don’t know anyone who actively deals with the condition 😳 Another reason why MyAdvo’s Peer Advocate Program, officially launched today (!), is critical. No woman needs to live her health issue in a silo when so many of us are dealing with the same challenges and can help get answers.
I’m calling on all women with PCOS, endometriosis, fibroids or an autoimmune disease to join us!
(Especially anyone with PCOS…asking for a friend 😅)
As someone pretty involved with women’s health, I was actually really surprised to be diagnosed with PCOS. But turns out, I had a lot of misconceptions about PCOS and I’m not the only one, which is why PCOS can be so difficult to diagnose. There is no single test that says you have PCOS, and oftentimes, symptoms vary widely or resemble other conditions’ symptoms.
Here’s a summary of what I’ve clarified about PCOS:
Brain fog = that feeling I’ve had of being scattered.
“Wired but tired” = low energy but also restless in my mind.
Irregular periods doesn’t just mean skipping periods. It also means having long intervals between cycles like > 35 days.
Having elevated androgens doesn’t only show up as excess hair growth. It means your lab work comes back high for the following: testosterone, DHEAS, or ANSD.
You do not need to present with “small cysts” along your ovaries to have PCOS.
In fact, PCOS cannot be solely diagnosed or ruled out by ultrasound.
I was always told my hormonal acne was a “bad gene” in our family, but it can be a clue to having PCOS (so can a high AMH…more on that later).
PCOS is something you can develop, but you were always technically predisposed to the condition.
I also thought that because I never found it difficult to lose weight that PCOS wasn’t a concern for me, but there are actually multiple types of PCOS and not all of them include trouble with weight gain.
Low Energy & Brain Fog
So last December, I started working with a functional medicine provider via Parsley Health because I’d been feeling this type of low energy and scattered-ness that seemed harder to shake off since my accident. My cycle had gone from 31 days to 40+ days even though I thought it may have to do with my fibroids. So over the course of 2 months, I got lab work done, fasting and cycle synching, to draw 20+ vials of blood across two lab appointments. What did we find?
Gluten sensitivity
High cholesterol
Vitamin D deficiency
High Testosterone
Elevated DHEA
Potential pre-disposition to thyroid disease
I won’t go into each of these results right now to focus on the PCOS markers, but I’m happy to chat through any of these (most are related to PCOS by the way)! Just DM me @hellomyadvo on IG or email me esther@hellomyadvo.com! You can also request to meet with our PCOS Peer Advocates here.
Doctors look for 2 out of 3 to diagnose PCOS:
(Source: Jean Hailes)
Irregular periods, which can present as no periods, light periods, skipped periods, or periods >35 days apart.
High levels of androgens (male-type hormones) like free testosterone, DHEAS, or ANSD shown in blood test or features of “clinical androgen excess” like acne or excess body or facial hair.
Polycystic ovaries visible on an ultrasound usually 20+ “small cysts”, or partly developed eggs, visible on your ovaries or ovaries appear enlarged.
In my case, I qualified for #1 and #2 and was specifically diagnosed with Adrenal PCOS because my labs showed elevated DHEAS in addition to high testosterone but no insulin-resistance (if a fasting insulin-level test was not done in your original bloodwork, I highly recommend asking for one after your PCOS diagnosis to understand your PCOS type).
I didn’t even know there were different types of PCOS…
Across social media and the women in my life, I’d mostly understood that weight gain and trouble losing weight was the main PCOS symptom, so I’d ruled it out for myself. Even the “types” aren’t fully established by experts. Some will categorize them based on symptoms / hormone levels while others (often functional medicine) based on symptoms / causes. Here’s my best categorization using several sources:
As I was listening to my doctor diagnose me with Adrenal PCOS, I recalled when I first froze my eggs in 2021 and googled my AMH Level (measures your ovarian reserve or egg count) at 7.49 ng/mL, more thaan double the average of 1.0 ng/mL to 3.0 ng/mL (Source: Cleveland Clinic). I’d wondered if it was an issue but only later learned that, while not a diagnosis of PCOS, high AMH can be an indicator of PCOS.
I have more questions since being diagnosed that I’m working through with my functional medicine provider and looking forward to bring to my OB/GYN and Fertility Doctor like, Did I trigger my PCOS? Are you born with it? What happens now? We’re looking into answering all of these in our PCOS 101 Guide this month so stay tuned (in the meantime, check out our Endo 101 Guide ❣️)
I’ll close this month’s newsletter by asking the following: if you have PCOS or if you know someone with PCOS, I’d really love to meet you/them! You can message me at esther@hellomyadvo.com or fill out our member form here! This disease barely gets enough funding (it wasn’t even included as a line item for NIH funding until 2022) and diagnosis is still so unclear. We need to lean on each other as much as we can, even if it’s just to help validate and identify our symptoms!
MyAdvo Monthly Reads
(policy, podcasts, research, trends & more to advocate for yourself)
⭐️ Tiffany Hadish speaks about her endometriosis and 8 miscarriages.
⭐️ Kristen Stewart’s egg freezing journey with her partner.
📚 Female patients treated by women doctors are less likely to die according to Annals of Internal Medicine study.
📚Study finds greater risk of fibroids in midlife women with untreated high blood pressure.
📚 Complications from alcohol use are rising among women.
📚 Breast cancer death rate has dropped 58% over 44 years in the U.S.
⚖️ Arizona Supreme Court has revived an 1864 ban on abortion. The House voted to repeal the ban; the Senate will vote this week.
⚖️ Pregnant workers finally have official protections thanks to federal regulation.