#I have to go to a doctor to see if I have PCOS or am intersex or something

[jinxneedssleep]

My dad is having the biggest uno reverse card of his life and he can’t handle it.

For context, my dad was never taught biology other than surface level estrogen = woman and testosterone = man

This is a gross oversimplification of the complex nature of biology, and to truly grasp how uneducated my father was, he hasn’t even heard of a punnet square and I had to teach him about it when I was younger

Despite this, my father acts like he’s an expert on biology and uses his aforementioned ”knowledge” to fuel his transphobic rhetoric.

He would call anyone that was outside his black and white box, a “freak”, “transvestite”, or “hermaphrodite”

Until after a blood test, they found that I had an abnormally high level of testosterone. Around the same as men, if not a little higher.

According to my dads logic, I’m a man. A man, pretending to be a woman. But he knows that’s not true, because I’m his daughter and he was there for my birth to know I wasn’t “pretending to be born a woman.”

So now his brain is doing mental gymnastics and frankly, let this be a lesson on what transphobia does

[moonlightpirate]

Thats it....im done with this year.....am I able to clock out from life until 2024 starts? Once again renewing my statement of 10/10 don't recommend being a woman with pcos especially not one that tends to have complications 😒

[intersex-support]

Intersex Support FAQ

1. What is intersex?

Intersex is an umbrella term that describes people who have variations in sex characteristics that fall outside of the sex binary. This includes variations in genitals, internal reproductive organs like testes and ovaries, chromosomes, secondary sex characteristics, and/or the way that your body produces or responds to hormones. Some examples of intersex variations include AIS, CAH, PCOS, Klinefelters, hypospadias, and more. 

The three main factors that define intersex variations are: 

Variation in sex characteristics 

The variation falls outside of the sex binary and is different from what is considered typical “male” or “female” development. These variations in traits might often be stigmatized and discriminated against for being outside of the sex binary.

This variation is either present from birth or develops spontaneously later in life. It is not caused by transitioning or by something temporary like a medication side effect, tumor, or other medical diagnosis. 

(This definition is inspired by InterACT).

2. Does ____ count as intersex? 

There are around 40 different intersex variations that are currently known. InterACT”s intersex variation glossary lists out those intersex variations and gives a brief description of each one.

However, we know that isn’t a complete list. People have intersex variations that haven’t been medically researched yet, or might have a rare variation that the intersex community isn’t aware of yet. 

There are also some variations that might seem on the border between perisex and intersex. Some types of hormonal or reproductive diagnoses might not have a clear answer on whether they’re intersex or not. 

Ultimately,  intersex is a social/political identity rather than a strictly medical one. Increased research and changing social attitudes can cause the definition of intersex to expand over time. Regardless of whether someone has a confirmed intersex variation or an “intersex adjacent” diagnosis, if intersex resources are helpful to you, we hope that you continue to use them and act in solidarity with the intersex community. 

On this blog, we do include PCOS with hyperandrogenism as part of the intersex community. Check out our PCOS tag for more posts about our reasoning, and PCOS specific resources.

3. Am I intersex?

We cannot diagnose you with an intersex variation over the internet. We can share resources such as the intersex variations glossary, share tips for navigating the medical system, and share information on other non-clinical signs of being intersex. 

Some questions to ask yourself that can help you start the process of intersex discovery:

What do my sex traits (genitalia, secondary sex characteristics, hormone levels, etc) look like? Does this seem like it lines up with the “typical” descriptions of those sex traits? 

Do I have any information about my birth? Were there any complications? Did doctors do extra testing at birth? Did doctors take me away from my parents for long periods of time? Did it take me longer to have my sex assigned at birth?

What was puberty like for me? Did I have early or late puberty? Did I have to go on hormones to start puberty? Did I have any variations in puberty, such as unexpected breast growth, irregular periods, or other changes? Did I go through puberty at all?

If you’ve tried to have children, are you infertile or struggling with fertility?

Did I have any unexplained surgeries or medical procedures as a child? Was I ever told I had to have organs removed and was told it was because of a cancer risk? Did I have to be on specific medications or hormones throughout my childhood? Did I have to go see a doctor more frequently? Did I go to an endocrinologist or pediatric urologist as a child? 

Do I have surgery scars or scar tissue? Do I have more frequent UTIs than typical?

Do I have access to my medical records? Is there records of hormone panels, ultrasounds, physical exams, surgeries, or other medical procedures? 

This kind of information can help you start to piece together if you think you might have an intersex variation, or if you think your intersex variation was hidden from you. 

If you’re sending in an ask trying to figure out if your symptoms line up with a specific intersex variation, please share as much information as you’re comfortable with so that we can answer with the most helpful resources. 

4. Can I self diagnose as intersex? 

It’s complicated! Intersex is different from other LGBTQIA identities, in that it’s not only about self determination, but also about our embodied experience in a very specific way. In order to be intersex, you have to have an intersex variation. And there are many intersex variations that can only be confirmed through medical testing, so it’s not something that is easy to self-diagnose.

However, we recognize that the medical system is expensive, discriminatory, and often actively hides information about people’s intersex variations from them. (it wasn’t even until 2006 that the AAP stopped recommending that doctors lie to their patients about intersex status, so many intersex adults were born before that policy change!) Considering all that we know about intersex oppression, curative violence, and medical abuse, it feels incredibly cruel to tell people that they have to force themself through that system in order to seek answers. 

So, we understand that there are ways of finding out that you are intersex without having a specific, confirmed, medical diagnosis. Many of us might find out that we’re intersex because we realize that our genitalia visibly looks different, and we can tell that we are intersex, even if we don’t know our specific diagnosis. Others might find out that we’re intersex because of strange discrepancies in our medical record. We might find out through discovering surgery scars on our body. We might go through puberty and realize that we’re developing in an atypical way to our peers. We might do a lot of research into intersex variations and have a pretty good guess into what variation lines up with our experiences. We might have some test results that help us understand we have intersex traits, even if we don’t know our specific diagnosis.  

Before self diagnosing, we think it’s important to do thorough research into intersex variations, so that you truly understand what intersex means, what intersex variations exist, and understand how that information applies to yourself. It’s also important to be considerate of how we interact in community spaces, and respect other intersex people's boundaries as you engage in a questioning or diagnosis process. 

5.  Are intersex people trans?

Some intersex people are trans, and some aren’t. Most intersex people are still assigned a gender at birth, and many intersex people who are raised as one gender and then later identify as another gender identify with the label trans. Intersex people can be cis or trans just like any other group of people. 

Many intersex people have complicated relationships with gender, and don’t feel like labels like cis or trans really fit their experiences. For this reason, terms like intergender and ipsogender were coined.

6. Are intersex people LGBTQIA?

It’s complicated! The “I” in LGBTQIA stands for intersex. Intersex history is intertwined with other parts of queer history. For example, the very first protest for intersex people in the United States was organized by Hermaphrodites with Attitude and Transexual Menace. There are intersex inclusive versions of community pride flags. Many intersex people view their intersex identity as a queer identity. Intersex oppression overlaps in many ways with homophobia and transphobia. 

However, not all intersex people think that intersex should be included in the LGBTQIA community. Sometimes this is for bigoted reasons, with intersex radfems who use this stance as a way to be transphobic. But there are also intersex people who think that the “I” should only be included in the acronym when intersex people are actually meaningfully being included in queer spaces and resources. Many of us feel frustrated when people put “LGBTQIA” on a resource but then don’t actually have any intersex specific information in those resources. 

In general, this is an ongoing intracommunity discussion where we don’t have a consensus. 

7. Are intersex people disabled? 

It’s complicated! Intersex is an umbrella term for many different experiences, and there is not one universal intersex experience. Some intersex people identify as disabled. Some intersex people do not.

Many intersex variations do cause disabling impacts in our bodies and lives. Some intersex variations are comorbid with other health conditions. Other intersex people become disabled because of violent normalizing interventions we’ve survived, such as forced surgery or other types of medical abuse. 

Intersex people are also impacted by many of the same structures of oppression that harm disabled people. Both intersex people and disabled people are harmed by ableism. Both intersex people and disabled people are harmed by pathologization. Both intersex people and disabled people are harmed by curative violence. 

In the book Cripping Intersex, Celeste Orr explores all these concepts and creates something called “intersex is/and/as/with disability,” which is a model to think about all these different and sometimes conflicting relationships with disability. Some intersex people might identify directly as disabled. Others might sometimes think about the way that intersex is treated as a disability. Other intersex people might think about intersex and disability as a way to have solidarity. All of these relationships with disability are meaningful parts of the intersex community. 

8. What is intersex oppression/intersexism/interphobia/compulsory dyadism? 

Intersex people face a lot of oppression in many ways in society. At the core, intersex oppression relies on the idea that the only acceptable sex traits are sex traits that fit into the sex binary. Intersex oppression relies on mythical ideas of the “ideal male or female” body, where someone's chromosomes perfectly line up with their genitalia and internal reproductive organs, with perfectly normal hormone levels and perfect secondary sex characteristics that don’t have any variation. When people don’t fit into that “perfect” sex binary, they are seen as less valuable, abnormal, and threatening. There is then a societal pressure to eradicate any traits and people that fall outside of the sex binary, which causes a lot of targeted discrimination of intersex people. This form of oppression is called “compulsory dyadism,” and was coined by Celeste Orr. 

Compulsory dyadism is also rooted in, overlaps with, and is the foundation for many other types of oppression. For example, ableism is another form of oppression that creates ways of harming people whose bodies and minds are labeled as less valuable for societally constructed reasons. Check out Talila Lewis’s definition of ableism for more information. Another example is how racialized people are targeted by sex testing policies in sports--both intersex and perisex women of color are consistently targeted by sex testing policies designed to exclude intersex people from sports. Another example is that homophobia and transphobia contribute to why intersex bodies are seen as threats that need to be eradicated--society views existing with intersex sex traits as a slippery slope to growing up as a gay or trans adult. Compulsory dyadism is also at the root of a lot of transphobic rhetoric about how transitioning “ruins” people’s bodies. All these forms of oppression are connected. 

There are a lot of ways that compulsory dyadism causes intersex people to be targeted and discriminated against. A huge issue is nonconsensual surgeries at birth, that attempt to “normalize” ambiguous genitalia, remove intersex people’s gonads, and otherwise alter genitalia or internal structures. These surgeries are often referred to as intersex genital mutilation, or IGM. These surgeries do not have any medical necessity, but doctors lobby to continue to be allowed to perform them anyway. These surgeries can sterilize intersex people, cause lifelong trauma, and also cause many disabling medical complications. Alongside IGM, intersex people also face a lot of different types of medical abuse. 

Besides curative violence and medical abuse, intersex people also face discrimination in our schools, jobs, and public places. We face legal discrimination in changing our names and sex markers. We face discrimination from institutions like CPS, which often target parents, especially people of color, that refuse to put their children through intersex genital mutilation. Many intersex people survive targeted sexual violence. We have a widespread lack of resources, visibility, and representation. Many people still have prejudiced ideas about intersex people and call us slurs. These are just a few examples of the many way that interphobia/intersexism show up in our lives. 

9. What is intersex justice? 

Intersex justice is a framework created by intersex activists through the Intersex Justice Project as a way to fight for intersex liberation. 

“Intersex justice is a decolonizing framework that affirms the labor of intersex people of color fighting for change across social justice movements. By definition, intersex justice affirms bodily integrity and bodily autonomy as the practice of liberation. Intersex justice is intrinsically tied to justice movements that center race, ability, gender identity & expression, migrant status, and access to sexual & reproductive healthcare. Intersex justice articulates a commitment to these movements as central to its intersectional analysis and praxis. Intersex justice acknowledges the trauma caused by medically unnecessary and nonconsensual cosmetic genital surgeries and addresses the culture of shame, silence and stigma surrounding intersex variations that perpetuate further harm.

The marginalization of intersex people is rooted in colonization and white supremacy. Colonization created a taxonomy of human bodies that privileged typical white male and female bodies, prescribing a gender binary that would ultimately harm atypical black and indigenous bodies. As part of a liberation movement, intersex activists challenge not only the medical establishment, which is often the initial site of harm, but also governments, institutions, legal structures, and sociocultural norms that exclude intersex people. Intersex people should be allowed complete and uninhibited access to obtaining identity documents, exercising their birth and adoption rights, receiving unbiased healthcare, and securing education and employment opportunities that are free from harm and harassment.” (Source: Dr. Mel Michelle Lewis through the Intersex Justice Project.)

There are seven principles to intersex justice: 

Informed consent

Reparations

Legal protections

Accountability

Language

Children's rights

Patient-centered healthcare

10. What is intergender? 

Intergender is a gender identity for use by intersex people only. It doesn’t have one specific definition-it is used by intersex people to mean a whole variety of things. It’s used to describe the unique ways our intersex experience intersects with and influences our gender.  Some people use it as a modifying term, such as calling themselves an intergender man or woman, as a way to explain the way being intersex affects their identity. Other people identify solely as intergender, and have that be their whole gender. 

11. What is dyadic/perisex/endosex? 

All are words that mean “not intersex.” Different groups will have different preferences on which one they like to use. 

12. Is hermaphrodite an offensive term? 

Yes. It is an incredibly offensive slur that perisex people should never say. Many intersex people have a very painful history with the slur. Some of us reclaim the term, which can be an important act of healing and celebration for us.

12. Can perisex people follow? 

Feel free, but understand that questions by intersex people are prioritized! Anyone is welcome to follow.

13. I’m writing a character who’s intersex…

Check out this post:  https://trans-axolotl.tumblr.com/post/188153640308/intersex-representation. If you’re writing about intersex people for a paid project, you should pay an intersex person to act as a sensitivity reader before publishing. 

Check out our Resources and Intersex Organizations pages as well!

[genderqueerdykes]

How do you find out if you’re intersex? I have terrible periods, was diagnosed with PCOS and put on estrogen and some other birth control before I went on T, and found out during my first gyno check that I just….dont have a canal? Which explains a lot because bedroom activities were so excruciating that I avoid them but my doctor won’t diagnose anything?

This is my regular doctor. I have a heart condition so I see him often enough. But he just won’t talk about it? Am I losing it? It can’t be normal.

you were diagnosed with PCOS and you don't have a vaginal canal. you're intersex! you don't need to find any other additional information or do any tests, those are both intersex variations! if you'd like to learn more, you're definitely welcome to research those conditions, or reach out to other intersex people to discuss your situations!

most people don't really find out they're intersex in a formal manner, it's generally when someone learns about the intersex community that they realize it. very few people are diagnosed or medically referred to as intersex, most of us are out here with intersex variations, still forced into M or F markers.

this is actually very normal- but that means you're not alone and you're not losing it though- more often than not, you are not going to get told you're intersex in that wording by a medical professional. especially in medical settings. even OBGYNs and other reproductive health doctors will not use the "I" word. most people find out they're intersex due to the variations and conditions they're diagnosed with, not the "I" word.

you're intersex, you don't need to get that confimation from your doctor because it's more than likely not going to happen. most doctors really are not on the intersex person's side. when i was diagnosed with PCOS, hyperandrogenism and other issues as a teen, i was forced onto estrogen like you were. i was never told i was intersex, though. the only thing they told me was that i was more than likely sterile. they were more concerned about telling a teenager that they couldn't have children than telling me what being intersex was. they likely didn't even know the word or what it means. i don't think most medical professionals have even heard of intersexuality.

most doctors see intersexuality as a series of health conditions that are a "problem to fix" and not a state of being that a person can exist in naturally without needing to be modified.

i hope that helps! you're intersex :) feel free to ask any more questions you have, i'm definitely glad to help! take care for now!

[lightofraye]

Update On Recovery

So I had received a message asking how I've been doing and I realized that I hadn't said much about recovery after surgery in a while.

Thankfully, there's no more pain. I've not needed to use either the narcotic painkiller or the over-the-counter stuff in quite a few weeks. The discomfort and pain I felt prior to surgery due to the fibroid is also gone.

I had been recently cleared to lift, move, etc, with the only instructions of listening to my body and making sure I don't overdo it. Imagine my delight when I could lift a 35 pound cat food bag with no issue.

Hormonally, tremendous difference. That little stubborn chin hair that kept growing back seems to have finally given up the ghost. I'll keep an eye on it. Normally, such a thing wouldn't be an issue. Facial hair is facial hair, not big deal. But this one was cause for concern due to the location--growing right into a scar. Ingrown hairstyle can cause problems and since I struggle to see the underside of my chin where the scar was, I was having to monitor closer than usual. But so far... it seems to have stopped being an issue.

Then there's the other hormonal effect. Prior to surgery, I had a variety of issues. My belly was forming in a way that was similar to how those who have PCOS. I was also gaining weight despite literally no change in diet or amount I ate.

Now? I've actually lost a little over 14 pounds and keep losing weight. Same amount of food. Same diet. But the hormonal effect of that fibroid is gone and now things are balancing out again. It is astonishing how big a difference that is.

Physically, I'm still dealing with the hematoma. It's shrinking, but it'll take a while. It was ridiculously huge and I can still feel the hardness of it in my stomach. My skin is still showing signs of the bruising discoloration. My doctor actually thinks it'll take up to six months to go away. I can't do much except just live with it until it goes away.

I've been back to work since the 31st. It's been weird getting back into work mode after 6 weeks gone. There's new policies, additions, changes, and I'm having to play catchup.

Overall... despite the finality of the hysterectomy meaning I wouldn't be able to have more biological children if I were so inclined... it was a good thing to have been done. I'd been dealing with that fibroid for five years. It caused tons of problems. That I can now wave bye-bye to it is a relief.

The break during surgery allowed me to rediscover the joy of writing. My writer's blog is acquiring followers and fans of my fanfics and that makes me happy. I've been enjoying the fanfics and will be channeling that writing passion elsewhere. (I have that screenplay that I am desperate to finish!)

It's going well.

[my-castles-crumbling]

hey cas...........so this is super duper personal so you 1000% do not have to respond to this but um here you go:

i am 18, afab, transmasc transnonbinary and i have to go see a gynecologist bc my body isn't functioning correctly (i get my period for too long too frequently and lose a lot of blood). now i don't typically experience dysphoria about things like my period bc it's just something that happens and wtv, but lately idk if it's dysphoria or just general icky frustration bc my body is not regulating itself and i can't control it. anyway, the whole point of the ask was to ask you if you've been to a gyn and what are some things that helped you feel more comfortable about your body and things you can't control. (and if you don't want to answer any of it or some of it or wtv, i totally understand. this is a super invasive and personal ask and i just thank you for even reading it.

all that aside: i love all of your works, esp trans!regulus! thank you so much for being the aunt of the marauders fandom and just being an amazing person in general!!! sending you so much love to you and your family through the holidays!!!!

Hi!

I have been to a gynecologist, I go every year. I've actually been going since I was 13 because I have PCOS so I've had a lot of issues with my cycle (such fun).

I'm going to put a 'read more' here because I'm sure many people don't want to hear me go on about the OBGYN for ages lol

I think the first thing I'd suggest is to be picky, if you can. I know that's not always possible, depending on your country, insurance, etc, but if it's possible to look into the gyn's policies when it comes to LGBTQIA+ patients, first-time patients, etc and pick a doctor that is accepting in that way, it makes a huge difference.

Along with that, before you go to the appointment, research what to expect. Before my first appointment, I read about exactly what would happen. I wasn't thrilled about everything I read, but I wasn't surprised at all, which was very comforting. Knowing what is coming can also prepare you to know what to ask for. For example, if you don't like hearing certain words for certain body parts, you can ask the doctor to avoid using those words and instead use others.

At the appointment, it's very important to be honest about how you're feeling. The nice thing is, gynecologists have better bedside manner than the average doctor, because they work with pregnant people, so if you're honest about feeling uncomfortable, they'll be more likely to listen. Say how you're feeling, ask questions about what is happening, and as weird as it feels, be very honest. I have had some VERY weird conversations with my gynecologist and there has been no judgement. Trust me when I say they have seen and heard EVERYTHNG, so it is much better to be honest. Along with this, if the doctor is NOT helpful or kind at any point, remember that you STILL have the power to remove consent. You have control over your body. You can tell them to stop, ask for a different doctor, or decide to go to a completely different office. You can ask why something is necessary, or refuse a treatment even if the doctor tells you that you should not. You have control over your body.

After any sort of check-up, make sure to ask questions about the suggested treatment. Ask questions about things that matter to you. For me, I always ask about how new medications might affect my weight, my estrogen and testosterone levels (because I am nonbinary and I don't want my estrogen too high), my mood, and my blood sugar (I am diabetic).

Most importantly, remember that you are NOT a bother. Whatever questions you ask, whatever hesitations you voice, however many times you need to correct people on pronouns or anything like that, you are NOT a bother. This is your health and it is extremely important.

Two more things: if you feel like a doctor isn't listening to you, at any office, ask for the doctor to note their decision in your chart. A written note of their decision can often cause them to suddenly be willing to do more for you. And...how do I say this without saying it. If you need to get a physical exam from a gynecologist and you are worried about...sizes of devices used for the exam? Some gynecologists have a smaller version of the device that you can request. I hope that makes sense...

Good luck! And if you have specific questions about what an appointment is like, you're welcome to DM me! I'll let you know if the questions are too invasive.

[am-i-the-asshole-official]

Am I the asshole for not going to the doctor?

TW for discussions of health and periods.

I (30F) have chronic health issues. Most are undiagnosed because I am overweight and that's all the doctors ever see, but I know I have arthritis and PCOS.

(Side note, I will be ignoring any responses to the tune of 'oh but you'd feel so much better if you lose weight'. This is not the point of the post.)

My period is late. Like, day 69 of my cycle late. My partner and I are trying for children, but due to my PCOS we were told we might have trouble conceiving, and there's been nothing for about 2 years now. I was on the pill for 10 years before we started trying, and were told that it might take some time for my body to normalise after so long on hormonal birth control. I did lose my cycle entirely for almost a year due to the pill, and it took about 6 months to come back after I stopped taking it.

All this to say that a 69 day cycle isn't entirely out of the realm of my history. My cycle has normalized a bit however, and for the past year or so it's usually between 12-40 day cycles. I've taken tests of course, but all have been negative so far (about 10?). I have been feeling quite off recently, but I was ill about a week before I noticed I was late (just a cold), and some of my other symptoms might be related to my chronic conditions.

My partner however wants me to go see a doctor. His argument is that even if it isn't a pregnancy then the doctor can tell me what else might be wrong with me. My argument is that I don't want to go see a doctor unless it's definitely is a pregnancy, because doctors have almost never helped diagnose me, and in fact I have my diagnosis because I put in the research and told the doctor what I suspected, and had to push for testing to confirm it.

I had undiagnosed back pain for 3 years because my doctor kept blaming my weight. Similarly, the disappearance of my period was blamed on my weight, and surprise, I have PCOS that might have been able to be treated better if it was found sooner (and also causes weight gain that is very difficult to control). I don't trust doctors to be able to tell what's wrong with me, because all I'm ever told is that I need to lose weight. I've been to many doctors, all said the same things.

Am I the asshole because I don't want to go to the doctors only to be told once again that I need to lose weight while ignoring anything that might actually be wrong with me?

What are these acronyms?

[ratatoast]

Whew, I’ve really been debating whether I should make this post or not, but I’ve decided that it is my civic duty as a fellow cyster to bring awareness and maybe help others understand or even recognise the symptoms and what it means to have PCOS

I could hit you guys with all the official terms and statistics, but I will let the pictures do the talking on that

I personally just thought that I should share my story and how I got diagnosed with PCOS, and how I’ve been managing since then

So, I got my first period when I was 10. Which is quite early, but it never really bothered me. I always had a very regular menstrual cycle, from the number of days I menstruated, to the length of each phase.

Well, that all stopped when I was almost 19. My periods stopped being regular, I even went 3 whole consecutive months without even ovulating once. I was always irritated, I gained a lot of weight, my skin was horrible and I just wasn’t really on top of my game in general.

But I just kept telling myself that everything would be fine. I floated through 2 years of my life without knowing if I would be getting my period each month. I didn’t understand why I was always so hormonal and I kind of started hating myself.

So this year, in the very beginning of july, now at the big old age of 21, I decided to go to the OBGYN. I was honestly scared shitless, but I was trying to gaslight myself into thinking that it would be all fine. Except it ended up not being all fine. Because I got diagnosed with PCOS.

Now, I don’t know about other OBGYNs, but mine didn’t particularly care to explain stuff to me, just gave me my papers and told me to get a bunch of tests done to find out my root cause. My regular doctor just gave me a pamphlet for dieting with diabetes/IR and basically told me to just figure things out on my own.

I think it’s honestly disgusting how little healthcare professionals seem to care about a condition that affects so many afab people. There isn’t a cure, because nobody cares to find a cure.

Well, they should.

Everyone should.

Living with PCOS isn’t easy. I have mental breakdowns about it on the weekly. I hate having to restrict what I can eat so much.

And I hate that it is worth it. I hate that I actually feel better when I don’t eat dairy, I hate that I actually feel awful physically when I eat carbs. It’s not fair.

And I hate that my sickness affects the most important (to me) aspect of my life: my fertility.

I have never not wanted children. Becoming a mother is the biggest dream I had since I was a kid. It’s my life purpose. And I might not ever get it.

But I can’t let my PCOS rule my life. I am me, first and foremost. Chronic illness or not.

And I really hope that every woman struggling with PCOS can look into the mirror at the end of the day and find beauty in what she sees.

You are beautiful.

You are strong.

You are loved.

[intersexcat-tboy]

I am in a weird position and I am curious to see what other people think because I can't seem to make up my mind.

So I was diagnosed with PCOS as a teen and it was explained to me as "you have too many boy hormones" disorder, and I was forced onto hormonal birth control to "fix" the issue even though I did not want that. And a few months ago after years of seeing people say that folks with PCOS were intersex, I started identifying as intersex (which helped me understand my experiences with forced hormone treatment).

And then I decided I wanted to start low dose testosterone to help bring my body to where I've always been told is where it naturally wants to be. I tried to look at my PCOS diagnosis to figure out what T levels to aim for and discovered that apparently I had not been diagnosed with the actual diagnostic criteria. I was diagnosed due to painful/irregular periods, a hormone test that is not actually part of the diagnostic criteria, and the fact that I "looked like I had high levels of testosterone" which I find suspicious because I'm mixed race but look white, and everything they said points to high testosterone were traits that I get from the non-white part of my family.

Even though I asked for and was told my endocrinologist would take through hormone levels before I started testosterone, that wasn't the case, and now my doctor says there's no way to figure out whether or not I actually have PCOS without stopping all my hormones for a month (which I am willing to do but she uses as a reason to not go through with it). So now I'm in this position where for the past decade or so I was treated as being intersex and understood myself as being intersex (even if not in those terms), and it seems like the diagnosis that lead to that treatment was incorrect, but I have no way of actually knowing.

And now I'm like. I still have the PCOS diagnosis, am I still allowed to identify as intersex given that the diagnosis may not be accurate? If the diagnosis is not accurate and/or it would be incorrect of me to identify as intersex for whatever reason, how can I find community and support around being forced onto hormones without taking away from the struggles and needs of folks who actually are intersex? Am I allowed to stick with the narrative that exists in my brain of "testosterone is bringing my body back to what it's supposed to be/where it would have been without intervention" even though there's a solid chance that narrative is untrue, because at this point I don't actually have any way to know?

To be clear I'm not asking for you to be the final arbiter on these topics or anything like that, I'm just curious to hear what someone who's intersex thinks about this because I don't have anyone irl whose opinion I can ask about this

The PCOS label is honestly often slapped onto people as a first diagnosis, when it's supposed to be a diagnosis of exclusion. There's also an aspect that you don't need to know what caused your variations you don't need a dx to know yourself. I've spoken with others about the concept of "what if there was never anything different and they did it anyways" or how "what if a different med caused it at a young age"- I connected to the second for a while, worried for a time that maybe the variations I had were actually caused by gabapentin lowering estrogen during most of my puberty.

There's a weird line of "intersex is biological" and "sex, including intersex, are social phenomena". Many intersex activists will say how perisex (trans) people don't face forced medicalization (I agree if it's *systemically*), but we have to remember David Reimer, where a perisex man's treatment was used to create intersex guidelines. I see him as an honorary intersex man because what he faced is, bluntly, an intersex experience.

I do think it is beneficial to explore how racism ties into this! Back on the social phenomena, intersex is different according to each actual culture and race, and BIPOC face an extra level of having to fit into white standards. Even if your traits are normal from that side of your family, are they in the race as well? Did anyone else in your family face the same medicalization? I never thought I was intersex because, to me, it seemed typical as it was typical for my family, but not broadly, ykwim? Just bouncing some ideas back

Also fuck your doc, I always hear stuff like "oh get a new doc" as if it's that easy.

I think ultimately you would find a lot of community with intersex individuals. I do think going on t, in a way, would bring you back to what it would've been if not messed with, whether or not that un-intervened state is intersex

[limeade-l3sbian]

I’m so frustrated. Im severely obese. I got diagnosed with PCOS about four years ago during a severe period of grief and did not take take it seriously, not only due to my pre existing internal issues but also because my doctor was extremely uninterested in the diagnosis. She made it come across as a super mild unserious thing. So in an already busy mind, that’s what I went with. Now years later i’ve lost half my hair and no it won’t grow back ever, i’m severely obese, I have really bad acne, i’m ALWAYS hungry, tired and unfocused, i feel so disillusioned with life. I’ve gone to the doctor since to get help with getting my symptoms under control, but besides birth control, no help can be given unless if I should want children. I’m basically on a sentence to early death. I will probably eventually develop diabetes because of this. I have doubts I’ll ever lose weight because it doesn’t matter what I eat or don’t eat, It’s like I have a black hole in my stomach and hunger cues are nonexistent now. I’ve tried protein rich diets, I’ve tried carb rich, I’ve tried mediterranean, fiber rich, keto, no sugar, nothing makes me feel less insufferably starved. I hate myself. I wanna scream every time I see my own image. I look like a man. I see women on here make fun of trans identified men’s hairlines and all I can think is mine is as bad or even worse sometimes. My worth was never based on looks but now that i look not human anymore i very much care. im grotesque. One big stretch mark, flappy, I feel like I can never get my hair clean for long or my body odor stay nice for more than a few hours. I shower and clean myself thoroughly every day, I’m super strict with my hygiene but it’s like my body is set in being one big greaseball. I don’t wanna go out. People stare. Why wouldn’t they? It’s shocking to see such a case.

I'm so sorry, anon. I wish I had some encouraging response that gets you fired up and has the secret to all your problems, but i don't. I'm not familiar with living with PCOS so I don't even want to presume what a hassle that is to live with. I'm sorry you weren't taken seriously by medical professionals who should've done all they could and I'm sorry

I can't offer you much except sorry. And I hope I am not the first person to say this to you. 💜

[crimsonthornedrose]

So..

I had been gone from here because I wasn't doing great! I will explain more in a minute, but some good things have happened since I've been gone and some not so good things have happened!

Not so good things -

🌿 The stiff person flare that landed me in hospital lasted an entire month which is the longest it's ever lasted, and affected muscles which aren't usually affected.

🌿 My ataxia was then triggered extremely badly for the first time in years, and I had intense vertigo with loss of balance for about a week or two.

🌿 I had an emg and nerve test finally but I'm still recovering from the pain of the needle going in multiple muscles as it's really sore still and I can't raise my right arm most days!

🌿 I had to call 111 as I had extremely intense abdominal and back spasms coming in waves and vomiting all night long at one point. Not sure what it was my condition spread into my abdomen or inflammation or what.

Though it kicked me up the butt to overhaul my entire diet.

Good things -

🌱 I have an app with a neuro close to me, it had to be rescheduled because of the snow, but should hopefuly now be on my way to getting a firm treatment plan in place mainly from having to go into hospital and the tests, so something good came from it! 😄

🌱- Once that's done I will be getting myself an electric wheelchair instead of struggling up the hill each day on the school run etc! 😅

🌱 I will have my entire overdraft paid off in May this year finally 👌

🌱 I've lost total of 1st 10lb as of today and I'm doing really well with my weight loss journey! I'm really taking my health seriously for the first time in years and have overhauled my entire way of eating, I'm eating lots of organic veggies and fruits and making things compeltely from scratch. I have also stopped binge ordering takeout.

🌱 TMI - In completely cutting out my intolerances/allergens even with cross contamination and overhauling my diet. My pcos has got much better and for the first time in a few years my last period lasted two weeks instead of months! Usually I don't come on for months at a time, and then come on for months super heavy. So that's made me very happy! :)

🌱 I've decided to buy my sisters house that I'm currently in, we have talked about this and so from July I will be opening a lifetime ISA and the extreme saving will commence haha but I should be able to put down a deposit around 2027👌

🌱 I am currently dating someone and he's extremely sweet and lovely and I'm seeing him again in February, but right now my sons father doesn't have a car at the moment to look after our toddler, but he makes me happy so we will see how things go, I have high hopes as he gives me reciprocated energy I've wanted for a long time! 😅

🌱 I am super into home decor at the moment and super focused on making my home extremely lovely, definitely found my vibe which is very bright colours and a little retro/quirky - dopamine decor haha :3

🌱 Me and my toddler had the best time in his school holidays we did so much crafting, playing and having fun everyday haha it was great! 😁

What's been going on -

🌲 The reason I've been all over the place the past few years, is because I've been 100% certain I have bipolar. It's become more obvious to me as the years go by and I recognise my own behaviours and patterns. I've been in denial over it over the stigma that comes with it. One of my family members has it and I didn't like the way some other family members talked about them, which kind of made me try and make it anything but, super long pmdd, seasonal depression etc. But I can't be in denial any longer and I'm ready to seek the help I need.

🌱 I have an app this month with the doctor but will most likely be taking myself privately because I want to get on the right meds asap and it could take a long time with the NHS.. It's tough having to deal with constant euphoric highs and rock bottom lows every few weeks/months as I rapid cycle.

🌱 I am just coming out of a really severe hypomania phase (but tbh I did get my entire house organised and sorted, have been ontop of everything, super happy) but then now I've been coming out of it the past few days, I've been extremely over the top irritable, sad and just bleh.

🌱 But.. Today I feel very calm, normal, stable and happy again! More like my normal self. So hopefuly I will have a nice normal period before I crash back into depression, ha!

🌱But, I have downloaded this app to track moods so I can print it out bring it to my psychiatrist.

🌱I've also downloaded a journal that I can do voice notes and it transcribes it into writing. So when I am crashing I'm not babbling it all on here ha.

🌱I will get myself sorted no matter what before the middle of this year with it, but atleast now I can recognise when I'm actually having an episode and I'm trying my best to put things in place to help me, like batch cooking and getting as much done as possible during my high phases to benefit me during my depressive phases ha! 😊👌

🌱 I also don't get paid until later in the month now which is an extreme blessing because during my hypomania episodes and even depression (where I can binge order takeout) I now can't physically do that and during my hypomania phase I managed to screenshot everything I wanted to impulsively purchase, and I have a list of about 60 things. So thank god for the change in payment schedule. I am determined to stick to my budget per month.

🌱 I've been looking up a lot of self help stuff on YouTube for bipolar and have a lot of new ideas in ways to help myself in the meantime, plus the guy I'm dating is very understanding of this too, so I'm very happy ☺️

[grvntld]

first half of 19 june 2024—lol i got stressed, so i decided to take a pamper sesh 🎀👁👅👁🎀 i was supposed to have my routine pcos checkup + go to my derma for my followup checkup but my obgyne was unavailable and then my derma's clinic was not open yet (((well, izz open now since they start at 1pm but boohoo))). i was ready by 9am, so i was soooooo not in the mood to wait that long, especially since my obgyne already cancelled on me.

while i was supposed to see my doctors, moosey would be busy registering our car, so when i learned that all my appointments were not going to push through, i was really bummed. moosey, then, suggested for me to just relax, go to a cafe, or have a pamper sesh, so yep, there i was getting a facial, a diode treatment, and a haircut, while moosey was having a beep beep day with our 🚗.

hehe first half of mah day: 1000/10 nyahahahahahaha hooray like inconvenience whO?¿?? i onli know pamper sesh byE i feel pretty bc i am pretty dUh (*ᴗ͈ˬᴗ͈)ꕤ*.ﾟ

[skeletonfromthecloset]

can we please please please normalize talking about periods 🙏🙏🙏🙏 because so genuinely. what the fuck. it is literally something that like half of the population goes through/has at some point gone through. ALSO CAN WE PLEASE STOP USING FUCKING GENDERED LANGUAGE WHEN TALKING ABOUT PERIODS OH MY GOD!!!!! (I AM LOOKING AT YOU ALWAYS!!!!! GFY!!!!) but yeah. cuz like what. it is 2024 you would think that people understand how to not be childish about these things. like you are grown wdym you can’t talk about periods. literally just a body. doing body things. also like. normalize talking about horrible periods & related like body disorders or whatever!!!! please please let’s talk openly about endometriosis & pcos etc etc. let’s talk about afab people who don’t get periods!!! let’s talk about infertility!!! let’s talk about what the ‘normal’ amount of pain is!!!!! so many people (with uteruses!!!!!) are so so so soooo uneducated because the school systems are fucking useless!! it is not normal to have debilitating periods!!!! it is not normal to bleed through a pad/tampon in an hour!!! these are things you should see a doctor about!!!!! if you have literally anything mildly concerning go to your doctor!!!!!! also doctors. can we please actually listen to people with periods. can we please do that. can you please educate yourselves better. please. i beg.

[futzingbarton]

kind of a nika update since i don't really post much personal stuff on here, but i think?? most of the ppl i wouldn't want seeing any personal updates are blocked and would have to go out of their way to see this so. whatever.

anyway hi. i am crawling along. the tl;dr is that after the past, uh...what now makes 7 years of being constantly in survival mode, moving from place to place, living day to day and just desperately trying to survive, as of, idk, september? my life has finally kind of somewhat slowed down. i got out of a very horrible living situation, and have been working every day on remembering how to Live and Breathe. turns out trauma is a lot!

on top of that, i am finally in a space to address my health. besides mental health (diagnosed with things that make sense, the adhd and the autism) i'm also figuring out my physical health. i finally got my PCOS diagnosis after a couple years, and am in the process of figuring out what kind of EDS/connective tissue disorder i've got. my life at the moment consists largely of working, followed by doctors appointments, followed by sleeping.

i'm more exhausted than i ever could have imagined. i'm burnt out in a way i never expected. it's like i was a bird on an eight year migration and now that i've finally stopped having to flap my wings, i can't move at all. it's a lot to work around. i feel terrible that so many things have slipped away from me, whether it be responding to people or finishing up overdue commissions (i swear on everything in me that i haven't forgotten, @thebreakfastfish. i have the files on my ipad. i look at them every day! and yet, i pick up the pen, and my brain starts turning into static, and. yeah. i am working up the capacity to send you an email with a bigger update and some actual progress because you saved my ass last december and somehow it's been a year and aaaaaaaaaaaaa.)

work is good. work is great, actually. i love my job. it's a Lot, but i love my job. working in non-profit is a lot, and i am Important in that i manage a lot of projects for clinic services. i work to help the vulnerable population where i live, so it's fulfilling, but it's also exhausting. turns out Thinking for eight hours a day makes your brain mush. this year has also been a series of unfortunate events for my job. four of our physical locations flooded in january, our main clinic was destroyed by it, we've spent months building back up and figuring out how we're going to rebuild, etc etc. tons of long term things in the works to fix things that happened overnight 11 months ago.

so things are Good but things are also Endless. i'm trying to not lose myself in the thought that this is how it's going to be forever. i want to create again, to dream and think and breathe again. there are moments among the fog where i do live and breathe and enjoy--i have a partner now, who was a friend of a few years first, and he brings me so much joy, and helps me love myself in ways i didn't think i was capable of. but by and large every day is a struggle where i am relearning how to live. how to feed myself and care for myself and exist in a way where i am not crushing myself to survive.

i hope i can get to a place where i can do the things i want to do again. i want to run tabletops again--but the thought of organizing something weekly, for multiple people, and creating and responding to things on the fly, makes me physically hurt. i want to draw and paint again--but i pick up anything and stare at the paper or ipad for hours and then sigh and turn things off. i think of words in the shower and run to write--but then i open the document and everything is gone. i feel like i'm in limbo, in some kind of purgatory, trying to crawl my way out. but at least i'm not in the inferno anymore.

[incorrect-batfam-quotes-mostly]

Happy Endometriosis Awareness Month. This is my story

Hi, I'm Nia and I have endometriosis. Probably. For the past several years I have been fighting to be believed by the healthcare system only to be told over and over again that there is nothing wrong with me. Despite the fact that I have all of the symptoms and that the 'whatever is wrong with me' has progressed in the past several years.

About a year and a half ago I went to the doctor for the first time about my debilitating pain where I was told that I was just overly anxious and my mental health was affecting my periods. I was given pain meds and sent on my way. After that it was a billion blood tests to see if it was a thyroid issue, hormonal imbalance, blood pressure, anemia, anything that could be tested was tested. Finally my doctor goes 'it's PCOS' and proceeded to list a bunch of symptoms that I did not have. Then I did not have it.

During this time I was given birth control medications. The first one, I was able to stay on for around a week before I rushed back to the doctor to change it because it was affecting me so badly. The second prescription was great, for all of two weeks. Then I bled for the entirety of October and thought I was going to bleed to death. I became seriously anemic because of it. The third one is the one I've been on for 4 months now. I'm tired and sore 24/7 but hey, at least I'm not dying.

I have missed over 50 classes this school year. It was not until my second medication failed so badly that my doctors finally agreed I probably had endometriosis and that it was certainly a serious situation.

For the past three years and a half years, my life has revolved around my period. It is a constant worry for me of when I will get it next and how bad it will be. It is also a terrifyingly realistic possibility that it will be several more years before I get any type of answer. 

Endometriosis is a horrific, cruel and neglected disease. At every turn, the job of advocating and fighting is left up to me. I have to call doctors, check in on referrals and beg and plead to be taken seriously. I’ve been told again and again I need to make the doctors like me, I need to make a connection. I need to make myself a human to them. Not another name on a list or another young person who doesn’t understand their own bodies. 

I keep fighting anyways. Most importantly, I talk about it. I was raised not to be ashamed of being a woman and I am not afraid to talk about my struggles, even if menstrual cycles are still considered taboo subjects by many. I know that there is something wrong and I refuse to stop searching for answers. I am not afraid of my body, I am afraid of the system that is determined to undermine and dismisss  womens pain. If you think you have endometriosis or something similar, put on some armor and get ready to be a warrior. It’s going to be a long journey and you’re going to have to fight. Fight like a girl. 

[pseudowho]

Hello Haitch! Hope you are doing well.

Last year during summer, I was diagnosed with PCOS (i had gotten it checked because i hadnt had my period in like 3 months) and since i was just 17, the doctor asked me to maintain a proper lifestyle and see till November and said that if it wasnt fixed by then, i had to do a checkup again. But i'd gotten my period by august so i never reached out again.

but this year (im 18 now), the last time id gotten my period was in april so it's been 6 months now. im gonna go to the doctor again later this month. but here's the thing— last year, i went to a gyno abroad because women's healthcare isnt the best in my country. but this year, its not possible for me to go abroad right now so im gonna have to work with a gyno from here.

now i have a feeling that theyll put me on pills and while i agree thats the easy way to fix this, im worried itll mess things up for the long run. the lifestyle the first gyno asked me to follow is a little difficult for me to get into since she'd asked me to exercise plenty and im a full time alevel student and it gets hard for me to maintain a proper routine like that. i also struggle with binge eating which i've heard comes with having pcos (im not sure if this is true tho).

so in one hand, i feel like it's easier to just start taking pills but then again it has so many side effects i don't know what to do right now.

Lots to unpack here.

CW/TW: PCOS, medical discussion, endocrine disorders, diabetes, hypothyroidism, weight management, medication management

Firstly, PCOS is often diagnosed based on vague criteria; lots of doctors flippantly diagnose it based on a volume of loose criteria. If you have an increasing number of these criteria, then yes, the chances are you have PCOS. However, it's often erroneously diagnosed without proper diagnostic procedures such as scans, bloods, and a full review of your longer term health history.

That being said, being on the pill doesn't 'cure' PCOS, it can simply manage the symptom of irregular periods. There's flimsy evidence on the pill's ability to manage/prevent weight gain and the development of other disorders that are associated with PCOS.

While weight loss is often harder for women with PCOS, especially if you have associated conditions such as an under active thyroid, it's not impossible.

Your lifetime chances of developing Diabetes are significantly higher with PCOS, and this chance goes up again if you struggle with increased body weight. PCOS and appetite changes like binge eating have been associated with each other, too.

So you'll only know if managing your weight and eating habits make a difference with your PCOS, when you've actually tried them to the absolute best of your ability. If you are at an increased ideal weight, losing weight can be very effective to manage and reduce the symptoms of PCOS.

Of the many, many thousands of women I've looked after, I'm sorry to say that those with PCOS who are very pro-active with managing their weight, perhaps taking medications as advised by their doctor (the pill and Metformin are the most common ones I see), and exercising regularly, are those who have the highest chance of being 'healthy' (though I do not use the term 'healthy' lightly).

Ultimately, PCOS is one of those things that just happens and isn't your fault. I also have an endocrine disorder that makes it very easy for me to gain weight and very difficult for me to lose it, so I absolutely understand the situation yours in right now.

But, what do you do with this information? Do you say, "I am X, Y and Z because of my PCOS" and leave it at that? Or do you say "I suffer with X, Y and Z because of my PCOS, so I make life choices to reduce the impact of my PCOS by 1, 2 and 3".

So my advice is this: PCOS may be the hand you've been dealt, but your lifestyle choices can massively improve the chances of you reducing its impact on your long-term health. I'm not blaming you, or acting like healthy eating, exercise and medication decisions are easy; they are not. Please recall I'm in a similar boat, and I'm not one to blame women for their complex health conditions.

I could talk all day about PCOS but this is my best attempt to summarise it for you.

It's really hard making tough life choices to manage the hand you've been dealt. I fully understand. I've gotten better at it as I've gotten older. @mrhaitch makes similar big decisions, because he has two diabetic parents and one diabetic siblings, so he takes care of his health to a brilliant degree, to try to give himself the best chance of not developing diabetes himself.

☝️ me being your hype man

Love,

-- Haitch xxx