#Polycystic Ovary Syndrome (PCOS)

[interactyouth]

Intersex is an adjective. Some people with PCOS feel it fits. If we’re just talking about women, there are tall women, big women, skinny women, feminine women, butch women, and everything in between. For some, intersex is just another adjective: intersex women. Using intersex as an adjective takes back power. It can be a language shift that says “actually, I’m okay with my [facial hair/high testosterone/other sex differences]. Those things don’t make me less than.” 

[lordmushroomkat]

《The strong association of PCOS with cis womanhood, the defining of it as a disorder or syndrome, and its framing as a “women’s health issue” obscures the fact that PCOS is a natural hormonal variation, an endocrine difference that is illustrated through secondary sex characteristics. 

During my initial search for resources and community, I also learned that PCOS, given its characterization as a hormonal variance, falls under the intersex umbrella. This intersex umbrella covers a wide range of “individuals born with a hormonal, chromosomal, gonadal or genital variation which is considered outside of the male and female norms,” and PCOS meets that definition. 

This is not an attempt to sway every person who has PCOS to identify themselves as intersex—though it is an acknowledgment that we have the option and the right to do so if it rings true to us. Rather, this is to say that shifting my perspective on PCOS and viewing it through an intersex lens allowed me to better understand it as a natural human variation rather than an affliction causing my body to do the “wrong” thing. 

“I believe that someone with PCOS has every right to use the term intersex for themselves if they want, but I also understand it if they don’t,” said writer and intersex advocate Amanda Saenz.

“As an advocate and an intersex person, I opt to use a definition of intersex that is open ended and expansive,” Saenz explains. “The experiences that a term like ‘intersex’ hopes to define include differences in hormonal production and hormone reception, and the phenotypic effects these differences have on the body. To me, this is inclusive of things like PCOS.”

Discussing PCOS in this way is often met with indignation and resistance. Our society has a hard time separating gender from sex. This has resulted in a widespread misunderstanding of intersex identity as equivalent to transgender identity. Many who vehemently resist the idea of PCOS being under the intersex umbrella do so because they categorically link “female” with “woman,” and therefore misinterpret any acceptance of intersex identity as a denial of womanhood. Moreover, the stigma around and marginalization of intersex communities prevents many people from feeling comfortable with embracing it. 

“You can be intersex and cisgender, transgender, or nonbinary. The ‘opposite’ of intersex is endosex, not cisgender,” explained Eshe Kiama Zuri, founder of U.K. Mutual Aid. As a nonbinary intersex person, Zuri approaches these ideas with a clear understanding of how the bodies of intersex individuals as well as many people with PCOS interrupt binary thinking about both sex and gender. 

“The resistance to PCOS falling under the intersex umbrella is due to a white supremacist society’s desperation to cling to binary genders, which we know [have been] used as a colonial tool of control,” they offer. 

The same medical and surgical interventions that legislators seek to ban trans and nonbinary people from accessing—which would be gender-affirming, life-saving care for them—are often forced on intersex infants and children who are unable to consent. This is done in efforts to align intersex bodies with social expectations of female and male, man and woman; the same logic undergirds the societal and medical pressure to “feminize” the female-assigned bodies of PCOS patients. 

PCOS is “shockingly common [and] the most frequently occurring hormone-related disorder.” However, according to Medical News Today, “up to 75% of [people] with PCOS do not receive a diagnosis for their condition.” If we were to understand and accept something like PCOS as intersex, considering how “shockingly common” it is, the dominant idea of binary sex, with intersex being thought of as nothing more than a fringe occurrence, would be shattered. 

“PCOS is only one of many conditions that could fall under the intersex umbrella, and care for people with PCOS would be considerably better if it wasn’t for the forced gendering and resistance to providing actual support for people with PCOS, even if it challenges society’s ideas of gender,” says Zuri. 

Combating myths built around the gender and sex binaries would create more space to understand PCOS traits as part of normal human variation, rather than inherent problems to be fixed, symptoms to be eradicated. As Zuri so beautifully put it, “When we start to accept that this is not a body behaving ‘wrong’ and it is just a body, we stop blaming and punishing people for how their bodies work and start challenging societal expectations.”》

I was fucking right!

[69constellationsinatrenchcoat]

Normalising certain things can be dangerous - especially around mental illness and physical illness. A good example of this is how period pain has been normalised.

People with periods often dismiss their pain on the basis of "everyone gets a little pain", doctors dismiss painful periods, specialists dismiss them too as it's so normalised to have painful periods where it can be a symptom of severe chronic illness; endometriosis, polycystic ovaries, adenomyosis, even kinds of gynecological cancers can present as "a painful period"

Destigmatising painful periods (and honestly, pelvic health for all people) helps to push societal acceptance and awareness of the fact that those issues exist, and allows for conversation when problems arise.

[roisinivy]

September is PCOS Awareness month. Last year I made a post including all of the common symptoms. As it's nearly a year since my diagnosis, I thought I would share my story of being diagnosed...

I started showing symptoms of having polycystic ovary syndrome (PCOS for short) when I was 14, in 2018. I went 9 months without a period, started growing body hair in places that are not considered 'normal' for women, gained a lot of weight, started getting very oily skin and acne.

When my mum queried this with a doctor, she was told I was just a teenager having an irregular phase and that no doctor would seriously look at a diagnosis for me until I was at least 16.

(what my mum didn't know is that I was being groomed and had been assaulted, which is when I developed binge eat disorder, which also accounted for the weight gain...)

By the time I had turned 16 in 2020, covid had put the uk into a second nation wide lockdown and completely ruined an already struggling NHS.

I didn't see a doctor about my PCOS until a month before I turned 19, due to all of the backlog.

My doctor ordered a blood test, and an ultrasound of my ovaries at a nearby hospital. The blood test was completed within a week, but it took me 6 weeks to get my first scan. I am still a virgin, and due to being sexually assaulted when I was younger, I was extremely nervous about having something in me and to have a nurse/doctor see me like that.

The external ultrasound was incredibly painful, having a bladder full of two liters of water pushing down onto you. The nurse couldn't get a good enough view, so I went to relive myself before having what would be my first of three ultrasounds.

The nurse took one look at my scan and confirmed I definitely had polycystic ovaries, she could also see I had ovulated. I knew I would be having my first period in 4 months in December of 2023. This was the last period I had, it was the worst I'd had in a very long time.

On my first scan, a large cyst was spotted, so I would need a second one due to the size of it. It was roughly the size of a ping-pong ball. My ovaries are also swollen to about three times the size they should be.

By my second scan, it had disappeared. I had a third as a precaution, which was also clear of anything concerning.

I then started taking Cerelle birth control in February.

I have had two bartholin cysts (infection of the vagina), hives, extremely sore breasts on and off, nausea, low libido, acne, increased body weight, tiredness, rashes and so much more caused by my birth control...

But it's preventing me from having an increased risk of developing cancer when I'm older, masking my symptoms so that I can have a 'normal' life whilst living with PCOS.

Although I still grow a better beard than my 18 year old brothers thanks to the increase androgen lol

I don't know how long I'll stay on birth control, or if I'll have to use other treatments, but this is my PCOS journey so far.

[hiiragi7]

"PCOS is not intersex, it's a female condition. Only females get PCOS, it's not intersex" Wow, thanks for showing off how little you know about intersex conditions and openly admitting those you think are 'hermaphrodites' are the only 'valid' intersex people in your eyes. I guess.

[thediktatortot]

Hey!! I just learned something today. My brother has been a medical professional for about fifteen years (He started as a nurse but I have no idea what his qualifications are now, he's just really good lol) and he showed me something I didn't even know existed.

So, I've been avoiding asking my doctors about PCOS as I don't fit one of the common symptoms of weight gain from my hormonal issues, but my brother said that there are other types of PCOS that don't make you gain weight, so I should check out a diagnosis ANYWAY.

It's called Lean PCOS and is often hard to diagnose because of the lack of weight gain within the symptoms. Please check this out if you have been thinking the same thing as I have.

(copied medical text under the cut)

Lean PCOS is a type of PCOS that does not involve overweight or obesity. Because of differences in body composition in the types of PCOS, lean PCOS may need different treatment approaches.

Polycystic ovary syndrome (PCOS) is a complex metabolic endocrine condition that affects 1 in 10 adult females. It can cause a diverse range of features, including an irregular menstrual cycle, an excess amount of androgens (a predominantly male sex hormone), and physical features such as cysts that may show up on an ultrasound.

PCOS can cause various symptoms depending on an individual’s body weight. There are two types of PCOS: overweight or obese PCOS and lean PCOS.

This article explains lean PCOS, including symptoms, diagnosis, and treatment.

PCOS typically occurs in people who have obesity or overweight. However, it can affect people with a body mass index (BMI) of 25 or less. The “healthy weight” BMI range recommended by the Centers for Disease Control and Prevention (CDC) is 18.5–24.9Trusted Source.

Lean PCOS differs from overweight or obese PCOS in body composition and other factors. This means that doctors need to tailor treatment options to the individual needs of a person with lean PCOS.

Lean PCOS vs. PCOS

Most occurrences of PCOS involve at least one of the following characteristics:

high androgen levels

irregular periods or a lack of ovulation

small cysts on one or both ovaries

People with obese or lean PCOS typically have similar metabolic profiles, as there are similar levels of visceral adipose tissue (body fat), which is a hormonal feature of body fat that affects processes within the body.

Other characteristics that apply to both lean and obese PCOS are low grade inflammation and oxidative stress. Oxidative stress is an imbalance of free radicals and antioxidants in the body.

However, characteristics of lean PCOS can differ from those of obese PCOS in body composition and other factors, such as hormonal profiles.

Insulin resistance in lean PCOS

Insulin resistance is when cells within the body do not respond to insulin, so the tissues do not use insulin correctly during glucose metabolism. Insulin resistance can occur in either form of PCOS. Even if body fat levels are low, people with PCOS can have high blood insulin and insulin resistance.

However, rates of insulin resistance are lower in people with lean PCOS, with one study showing insulin resistance to affect 83.3% of participants with lean PCOS compared with 93.1% of participants with overweight or obesity.

Research in this area is ongoing, as it is still unclear whether insulin resistance affects people with lean PCOS to the same degree as those with overweight or obese PCOS.

Symptoms of lean PCOS

Symptoms of PCOS may include:

irregular menstrual cycles

excessive hair growth on areas of the body, such as the face, called hirsutism

acne

thinning hair

skin tags

areas of darkened skin, such as in the groin, underneath the breasts, and along neck creases

People with lean PCOS are particularly likely to experience symptoms similar to ones that affect females during puberty, such as acne, irregular periods, and depression.

[cillianmurphysdimples]

PCOS sucks.

Twisting cysts is fucking sore, dude.

[nagichi-boop]

Winter is the season of being able to wrap up warm, wear a hat to cover up the hair that you haven’t had the energy to wash, cover those legs that you haven’t had the energy to shave, put a heat pad on the part of your body causing you pain.

And then there’s summer. /neg

[shmaimy]

taking medicine that stops your periods (cuz endometriosis and pcos) is great cuz no period until you have been bleeding for 3 and half weeks and it is getting worse :P

apparently this is a normal thing? like, until i've had a couple more shots?

all i know is i hate it

[self-dx-culture-is]

self dx culture is probably having pcos and endometriosis but knowing you’d get brushed off and called an attention seeker

I’m sorry you’re having to go through this :(

Be safe. Hopefully things will get better soon

[curewhimsy]

guess who just got diagnosed with PCOS

[cameronmitchelljohn]

led in a super specific position and its pressing on my abdomen qnd easing my pain ouhhhhhhh dude maybe i WONT die innpain

[69constellationsinatrenchcoat]

hey disabled friends and anyone who struggles with eating :)

when i'm not feeling well and i'm super nauseous, i'll make what we've affectionately coined a 'pick plate' it's just a mix of foods cut small that are easy to pick up..and that smell good.

often it's enough just to trigger my appetite that i can eat (or the smell makes me sick). they're easy enough to do that they can be made sitting in a wheelchair or sitting down :)

i hope this helps someone!

sending love,

lillia

[sproutflags]

Alternative PCOS flag

I wanted to try my hand at an alternative PCOS flag for fun. The current PCOS flags are fine but I don't feel much of a connection to them. For this flag I took the color associated with PCOS (teal) and distributed it through the flag. The purple stands for intersex people. I was inspired by the CAH flag and deliberately made this flag look similar to that one.

Tagging for ID help: @accessmogai

[hiiragi7]

I feel a bit bad when younger intersex people with PCOS feel the need to add "technically I'm intersex" instead of just saying they're intersex - and I understand why, so many people will tell them PCOS is not intersex and they'll be bashed for it, but I wish it wasn't that way.

They are intersex, fully, not just on a technicality. They're full members of the community if they have PCOS and choose to take the intersex label.

[k1ll-ur-vibe]

do you have your doctors' telephone introduction message memorised or are you able-bodied