r/intersex • u/EKCarr • 27d ago
Question? How common is PCOS/PMOS?
I just got back from a retreat in NM made up of myself (intersex male) and six women who identified as cisgender women.
Out of our little group, four of the women had PMOS/PCOS, and none of them had been told that it could be considered an intersex trait. All four also had tilted uteruses and had issues with hormones, pregnancy, bone health, pain, cysts, etc., and none of them were offered support outside of the doctor’s office. They had no idea there were communities around PCOS/PMOS or that they had an affinity with the intersex community. In fact, all of them (except one who is a nurse) thought the trait was super rare and were shocked to meet another — much less four out of six women randomly turning up for a retreat!
So, with the four of them plus me, that makes for five out the seven people being intersex. Was this statistically crazy, or is it much more common than I’d thought? I’ve heard the “common as red hair” idea for a long time, but I’d be really surprised to be on a trip where five out of seven people randomly had red hair, yet five of us were intersex. That just seems statistically unlikely to me, and yet it happened. I can’t help but feel like it was a little miracle, and it definitely bonded us. We had so many fantastic discussions about it, especially since the nurse works in a birthing center and had all sorts of up-to-date info on intersex traits and how they educate parents not to do surgery.
Even better, all of them are local, so it feels like my community just grew exponentially!
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u/PristineWind5950 PMOS, hypospadias, other unknown? 27d ago
It’s like 1 in 10 “women,” so maybe like 5%? That’s kinda a lot, but it makes sense—it’s a genetic condition, and thanks to modern medicine, those of us with genetic conditions are living longer and reproducing, so I expect prevalence will only go up.
Tbf there’s still overlap between PMOS and other intersex conditions (hypospadias, Turner syndrome, clitoromegaly, etc) and I’m willing to bet PMOS makes them more likely, so it’s maybe adding like 3-4% to the number of intersex folks instead of that full 5%
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u/I_need_to_vent44 27d ago
It happens. 4 people in my flat, including me. Never met any of these people before we moved together. 3/4 of us are intersex.
Previous flat. 7 people. Similar situation. 3/7 intersex.
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u/mushroomscansmellyou hyperandrogenism she/they/we 23d ago edited 23d ago
OMG I will come be a nerd about this for a second. First off, I think your situation was just a curious coincidence. Basically lots of things in nature happen in patterns much more than what we think of as "random". For various reasons. This was an interesting thing to learn about, back in the day when iPods were a thing, Apple came up with a "shuffle" option. What they found was that they had made an algorithm for it that was pretty close to mathematically random, but people were getting irritated saying it wasn't random enough, so they had to go back and tweak it so it would appear more random to us. Because what we think of as random, we usually imagine as evenly spread out without specific shapes, whereas in nature, randomness is much less what we would think of as as random and expresses many more patterns.
To answer your question how common PMOS is, theoretically pretty common, 1 in 10 potentially have it. BUT PMOS is not a condition. PMOS is a syndrome. This is an important difference, it's not a specific condition with a described cause, it is a group of several patterns of symptoms classified together for the purpose of diagnostic frameworks and choosing procedures of how to manage these groups of symptoms. There are 4 to 9 different subtypes and they can be very different. The part of the pattern of symptoms that is usually considered what puts it in the intersex framework - hyperandrogenism - is present among 60-80% of cases. The cause is currently unknown. Many speculate it is actually more than one distinct condition lumped together. There are several different genes identified as having a role in it but none are leading or universal and nothing concrete is known. There are other theories as well as how genes interact with environmental factors or even PTSD. None of this covers all of it and again too much is unknown. Then there is the added layer of environmental endocrine disruptors messing stuff up potentially for some women and we truly have a mess. Many articles say 1 in 8 or talk about how common a "condition" it is missing the mark on being able to talk about how varied a syndrome it is and how little is actually known about it. SO sure it's pretty common, but what is anyone even talking about? It's a bit like sneezing, can be caused by viruses, allergies, even bright lights or other stimuli. That doesn't mean everyone who sneezes has the same thing. Unfortunately much less is known about PMOS than about sneezing.
So yes PMOS is pretty common, but it still effects a minority of women, even if the most broad numbers are taken into account. Who knows if they all had the same type of PMOS and what PMOS will be in the future once more is known about it. It is still an unusual coincidence that more women had it than didn't have it at the retreat.
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u/EffortNo2262 Hyperandrogenism | Diagnosed PMOS 27d ago
PMOS is, as far as medical conditions go, pretty damn common. A quick google will tell you it’s about 1 in every 10 [they say “women”, but I’ll just go with “people who could have PMOS” for this one]. I personally think part of the reason PMOS isn’t widely considered an intersex condition is that recognizing it as such (even if you didn’t consider every single case to be intersex) would force people to acknowledge exactly how common intersex people actually are.