35 Comments
User's avatar
emma's avatar

Thanks for this! I haven’t seen anyone else articulating it quite this way before, and it immensely resonated with an experience I had recently. I have an Oura ring and I’m 35 with “normal” cycles and hormones (per blood testing, though the perimenopause mafia will tell you those data are irrelevant anyway). The Oura app recently launched a “perimenopause assessment” tool. Curious, I filled out the survey, answering “yes” to a couple of nonspecific questions, including “Have you felt anxious in the last 30 days?”. When I finished, the app told me I was experiencing minor perimenopause symptoms. I posted in the Oura subreddit incredulously wondering how a health tracker app could essentially push people into pursuing a medical diagnosis from such nonspecific and equivocal data, and I got totally dogpiled by people telling me I *must* be perimenopausal (since I seemed annoyed by the survey) and that I should be grateful Oura is raising awareness of this issue. It definitely tipped me off to the fact that there is a frankly unscientific culture change going on wherein for-profit expertise is cultivating desperation and fear in women who think their bodies are doing something wrong, while keeping actual diagnosis a moving target. (Your hormones are normal? Haha, you rube, you’re probably still in perimenopause!) I’m not a perimenopause truther—I’m sure that hormonal fluctuations have had a huge effect on me throughout my life—but I’m waiting for science and diagnostic instruments to catch up because right now the conversation just feels so crazy.

Angella d'Avignon's avatar

Did they all have itchy ears too? The way people come after you really stuck out to me since isn’t the purpose of a forum to hear other people out? Very strange!!!

Valerie LeComte DO's avatar

I had a similar experience after my first covid vaccine (which I hate saying out loud because I’m very pro vaccine!), but I think we are completely underestimating what COVID has done to us-physically and psychologically. I think there’s a subset of people with cardiac or lung problems who clearly have long covid. But a lot of people just vaguely feel unwell, have less energy, more insomnia and anxiety. My “perimenopause” symptoms started acutely at 36 after my covid vaccine and have worsened every time I’ve had it or had another vaccine. I’m looking around now at everyone (myself included) like is it perimenopause or is it damaged mitochondria with histamine problems, inflammation, and nervous system dysregulation?

Susannah Simpson's avatar

i have found this account to be full of pertinent and helpful information-- i don't have excess income-- but did find it worthwhile to briefly become a paid subscriber and get as much info as possible: https://substack.com/@saraszalmd?r=2rw0d&utm_medium=ios&utm_source=stories&shareImageVariant=light

Angella d'Avignon's avatar

awesome, thank you for sharing!

Angella d'Avignon's avatar

yes! i think so too! i am pretty sure long covid wrecked my immune system and it feels like the world is dedicated to pretending it never happened. my timing was really similar...it could be so many things and i wish we had more comprehensive testing or assessments for long covid. long covid doesn't have a great marketing angle either, now does it?

Valerie LeComte DO's avatar

No it doesn’t! Not FDA approved but I’ve ordered mitochondrial testing to try out on myself as an experiment. Medicine has mostly moved past this and wellness will just try to sell you hundreds of dollars of supplements that you may or may not need. It’s a really frustrating space to be in & I’m really working to find answers for myself personally that will help me help patients that are in this boat because it is SO many people. Think I’m on the right track with putting a few pieces together but we will see!

Angella d'Avignon's avatar

Incredible. Have you read The Sick Times yet? They're dedicated to long covid research! https://www.instagram.com/thesicktimes/

Valerie LeComte DO's avatar

No, thank you!!

Elyse's avatar

As a 42 year old with pmdd and autism (recent diagnoses), along with self diagnosed POTS and perimenopause, I feel read to filth. Social media echo chambers and anti intellectual discourse are valuable as long as you also have access to actual science. Birth control helped my horrible moods and frozen shoulder, even though I avoided it until 41. Who knows how covid and global warming and the internet have affected us all. My take is that perimenopause is not a psy-op, but is likely a case of millennials overreacting to what previous generations under-reacted to.

Angella d'Avignon's avatar

“My take is that perimenopause is not a psy-op, but is likely a case of millennials overreacting to what previous generations under-reacted to.” A succinct and well put take.

I appreciate this comment and all you’ve shared here and I’m sorry it’s been so difficult to get answers and resolution. I’m right there with you with PMDD and AuDHD. In my quest for answers, I feel at odds with my doctors AND comment sections/forums and couldn’t help but notice how repetitive and opportunist marketing efforts are. The title of the post is clickbaity for sure, and I know that peri is real, I just feel so mislead and it sounds like a lot of other people are too. I think our generation is in a perfect storm of misinformation and insufficient research, which is to say, I totally agree with you.

grelloh's avatar

At this rate it just feels like another desperate "quick! Find a reason that we can market and diagnose the women with to gaslight then from their own rightful rage!" - maybe a lot of women are just *angry*, are we allowed yet to just be angry without it being explained away by our horrible horrible hormones? Those dastardly things making us all HYSTERICAL.

Angella d'Avignon's avatar

Literally! I also don't love being told that I shouldn't trust myself or what I know about my own body body in order to engage in this new cottage industry, or that perimenopause is something that needs to be fixed.

Mojavelil's avatar

"The Wisdom of Menopause" - Dr. Christiane Northrup

Angella d'Avignon's avatar

Thank you🙏🏻

Unfolders's avatar

Your own normal test results are the hardest part of this to square away. Perimenopause is generally diagnosed by pattern and history rather than a single hormone panel landing in range on a given day, so a normal test doesn't settle much either way. Overselling precision is a fair critique of the testing companies, but it's a separate question from whether the underlying transition is being manufactured.

Maureen's avatar

What sleeping pill do you take?

Angella d'Avignon's avatar

My doc prescribed me Seroquel generic (quetiapine) as an off label sleep med in 2019

Patt Nowak's avatar

Thank you so much for this. I'm currently trying to figure out why my period is so late (I'm asexual so it's either the second coming or something else) and I had several people suggest perimenopause to me since I just turned 35 in May. I've also struggled with ADHD all my life too, so it was good to read about someone going through almost the same thing. I think it's time to do some research of my own! Thanks again!!!

Angella d'Avignon's avatar

Of course! Let us know what you find. I've put some books on my libby account myself. :)

terry nguyen's avatar

this is such a good post and the perimenopause phenomenon is so so fascinating. i also have/had severe pmdd and have been on a low dose of hrt for several years; i feel like a bit of a wellness crank for “doing my own research”… but god forbid a girl run clinical trials on her body just to… feel/be sane??

Angella d'Avignon's avatar

Thank you! That means a lot. I have pmdd too! I'd love to hear about your experience with hrt sometime. Advocating for yourself gets exhausting and I'm so tired lol

LB's avatar

I did chemical menopause for a year before deciding to get a hysterectomy and I had exactly one hot flash and otherwise only experienced post injection side effects. So like…I don’t get what all the fuss is about truly.

breanne's avatar

Omg yes — I was just thinking the other day where are the ppl I know who are traveling through perimenopause!!! I’m 46 and am in. it. You hit the nail on the Thread. For books, I’ve been skimming Lauren Tetenbaum’s “Millenial Menopause” and [spacing on the author’s name] “Could it be… perimenopause?!!” from like 1992 and featuring Lichtenstein-esque babe gasping on the cover. We gotta talk!

Lucia Love's avatar

Omg saw your piece and immediately devoured this, thank you for writing! I don’t have any specific titles to mention, but I do have the lived experience of being flooded with Winona ads. They got me on a deep dive into what estrogen and progesterone do and how they fluctuate so frequently over the course of a day that hormone testing by blood can be completely irrelevant. It’s actually good to check your thyroid in this case, which makes sense as the little glands regulate weight and sleep, anxiety etc. I also just learned that estrogen can severely exasperate symptoms I was having caused by something I actually need surgery for. Lmaooo Winona wonder pills could’ve totally fucked me. Perimenopause can be real, like sure, let’s give this time of our lives a name! but let’s not deal with it over telehealth apps that downplay the way hormones effect us. The world is on fire and prolonged stress can cause these symptoms too, so of course we’re gonna make a pill dispensing button to handle the crisis instead.

Corrina's avatar

It is just like c.2011 when every woman had 'adrenaline fatigue' or 'sky-high cortisol'. All to sell stuff...

Jessica @ Post-Wealth Project's avatar

“why are we overvaluing strangers’ posts on social media over medical papers, researchers, and published authors?”

Are you ignorant of the well-documented history of how the medical profession in general hasn’t studied women’s bodies, doesn’t understand them, and don’t believe women? You have your own experience, shared here, of having doctors gaslight you and dismiss you. Most women have had experiences like that. Medical research has overwhelmingly ignored women or treated them like a small man. The hormonal fluctuations we experience monthly resulted in women being excluded from clinical trials, with female participants not being required until the 1990’s. That is why. Women have always had to go to each other to get our experiences corroborated when institutions told us we were just loony. It seems like your chief complaint about this is that things have always been hard for you, so even though you acknowledge that friends of yours have experienced perimenopause, you don’t believe women online or think they are part of a marketing conspiracy. Seems like a stretch. Are there bad actors? No doubt. Are there people trying to make a billion dollars from this? Absolutely. But while you’ve demonstrated some correlation I don’t see where you’ve provided any evidence of causation.

Angella d'Avignon's avatar

I believe women and people who struggle with hormones and their changing bodies online but not when I get shouted down for asking reasonable questions or for noticing anti-intellectualism and marketing en masse. I address every point you raise. Thanks for your input.

A Friday's avatar

Going to leave totally unsolicited personal advice: you might have adenomyosis. Your symptoms matched mine very well and I had it and endometriosis.

Libby Alexander's avatar

Yeah. I had similar symptoms and had severe endometriosis that you couldn’t see on an ultrasound or most typical physical exams.

Britt's avatar

I have a lots of thoughts. as someone who is 43 and as someone who knows all to well that women have been an afterthought in medicine unless they are having a child or trying to have a child—-and even then, still an afterthought.

At least we are talking about it now.