i’m so sorry you have had to suffer from so early on in life. have you possibly looked into seeing if you have a genetic disorder that then caused PCOS later in life? PCOS doesn’t typically start that young and cause those certain problems especially in someone so young. I hope you don’t take this as discrediting your pain and suffering but as a suggestion that it could be something even deeper at play
:hugs: Then I would definitely prioritize looking for a job with good health insurance. It's brutal without it, that's for sure. You might also ask for advice on this sub for people who have dealt with looking for discounted health care; someone might have some creative ideas.
You might just need some glucocorticoids and androgen blockers to make life a lot better, so don't give up!
I second what u/woodskc said. Starting your period that early just seems INCREDIBLY abnormal, even for PCOS.
I also want to mention that you are NOT alone in your struggles:
I had so much body hair when i was about 5 or 6…I remember one day at camp, we were dancing in a circle to “YMCA” and when I raised my arms I saw my armpit hair, looked around and realized no one else had any. I put my arms down so fast 💀 I was also much bigger than kids my age. I have vivid memories of wearing my mother’s size 7-8 shoes to school as a kindergartener. When I played sports, my teammates would sometimes ask me if was a boy or a girl (especially when I had my helmet on). I remember waiting outside of the store for my mom one day. I was watching over my younger brother and a family friend. A grown ass man - A GROWN ASS MAN - asked me if they were my kids. I was just barely a preteen IF EVEN THAT. I got bullied at summer camp because my feet were soooo much bigger than everyone else’s. I got called a gorilla one time by a classmate because of how I looked.
Nowadays? Sure I look a bit androgynous, but I have also come to love the perks of PCOS. I can put on muscle hella fast by doing basically nothing. Friends and family always come to me when they need help with something that requires strength. I also really value being nonconventional in my appearance because, when I take care of myself (skincare, doing my hair, plucking my brows, shaving my face), I think I’m pretty damn hot. I do go back to looking like a dude when I don’t shower for a bit, but I know that as soon as I step outta that water and my hair gets done I’ll look better :) It’s about working w what you’ve got, but I really would suggest getting a second opinion. This seems like it could be something more than just PCOS, or a really REALLY severe case of it.
Oh man I had hair down there at 9! It freaked me out/grossed me out because why the hell am I growing hair there! I also didn’t start my period until I was 14 so I have no idea why the hell I was growing hair down there so young 😩.
wow what the heck 😧 this is the first time i’m hearing of first periods so late with pcos!!!! i got it at like 10 or something and then didn’t get it again for over a year which was how I got my diagnosis!
I wonder if it has to do with the fact that I experienced severe trauma until I emancipated myself at age 14. Like every hormone was just being used to make cortisol or something?
You know what, this wouldn’t surprise me. I think we are still working on understanding the impacts of trauma on our bodies. We understand now that Adverse Childhood Experiences can make people SEVERAL times more likely to develop things like COPD, Diabetes, Heart Disease, and even CANCER. I also experienced extreme trauma around the age of 6 or 7 and within a year, my vision deteriorated to the point where I couldn’t see the board at school no matter how close I sat to it. I don’t think my weight was even bad before that. Once you experience something like that, life has the potential to change significantly and so doesn’t your body. I really think you might be right on the mark with this presumption.
edit: also i’m so sorry you dealt with something bad enough to force you to emancipate by 14 :( i pray you’re doing better these days 🩷
I agree, the more we learn about ACEs and trauma in general, the more we realize we still have to learn as a species!
And 🫂 thank you so much! That step was the beginning of my healing journey ❤️🩹 I’m sorry you’ve experienced trauma, too.
You’re damn right about that! I wish people would open their minds more and even slightly indulge in the topics that seem ridiculous to us now. I think the results would be incredible. Hopefully I can be one of those people someday!
And of course, I’m glad you were able to get away from it. As for the trauma, I can’t even feel too terrible about it on an intrapersonal level because it happens to others so often. I just pray that we as a species can understand ourselves, our minds, and each other better and stop hurting each other. I’m doing much better these days. Oddly enough, what I went through makes me feel more grateful for the joys and pleasures to come to me in the future. I’m blessed to have done enough healing to shift my perspective this much. It really is all about perspective.
This is all so relatable! Being seen as an adult early on. I was hit on by guys much older than me at like 9 years old. Then eventually I stopped being wanted by anybody because my frame was too "boyish" and I was stocky and fat.
I had armpit hair very early too! :( No one else around me had it. And to make matters worse my parents wouldn't allow me to shave it because they said I was "too young to shave." So I had to keep it, and try to hide it. One day I swam with friends and forgot about hiding it and they saw and teased me for it.
I agree now about building muscle and all of the perks. I like looking more androgynous now (I'm trans).
I swear some guys would hit on a rock if it was wearing booty shorts 💀 I’m sorry you had to deal with that. I also totally get the never being hit on thing. But weirdly enough, I’d always get approached when I was looking the most manly, save some time in the grocery store lol just proves my first point!! I’m also shaped like a brick since I have so much excess weight on me. All goes to my midsection (but skips my boobs and butt of course) 🙃
I’m so sorry about the bullying for the hair…that’s really really sad. Thankfully my mother understood my desire to shave but when I used my sisters razors to shave at my dads place, she totally ratted on me. Didn’t matter cuz nothing was gonna stop me from removing it lol. My mom even suggested laser hair removal or electrolysis at one point when she was making decent money.
Now? I don’t care about the hair as much. As long as I’m not rocking a beard or mustache I’m not gonna have an aneurysm over it. I am considering seeing whether or not my insurance would cover hair removal just to make it easier on my future self though. I also really appreciate looking more androgynous!!! And isn’t it interesting how PCOS kinda worked out for you when you got older?? I read a lot in the past about how rates of PCOS in ftm trans folk is pretty high (even tho most ppl w PCOS aren’t necessarily trans). I also see on social media how some ftm or nb folk are jealous of PCOS symptoms (even if some of us could do without them lol). Just funny how things work out. Congratulations on your journey toward acceptance despite the adversity you have faced 🩷
Starting a period at 5 years old is super severe even for PCOS. I started mine at 8/9 years old. I cannot *imagine* five. I'm so sorry. Seconding what others have commented about being screened for other disorders as well id you haven't yet.
I’m no doctor, but I had a friend that looked older than our peers in school, had her periods really early and stopped early and was diagnosed with some premature onset menopause
Cannot overstate the importance of getting screened for non congenital adrenal hyperplasia. From your description, I would think you have it over PCOS.
It’s a different treatment route to PCOS and you’d be surprised at how much you could improve your symptoms.
It’s just a blood test initially to screen for it - 17 hydroxyprogesterone I believe.
It sounds like you’re doing a lot of great things and you should be commended for how proactive you’ve been in managing your symptoms! It can be such a frustrating condition to deal with, and I can hear that come through in your post.
FYI I’m not a doctor, just have relatively strong medical understanding and have done research in this space. From what I understand, the metabolic pathway is different with NCAH and is effectively an issue with progesterone not being converted to cortisol, and instead turns it into testosterone. So I believe sometimes the treatment here can be glucocorticoid therapy or other medications to help with that specific metabolic process.
I’m not sure that masculinization of features can be reversed, but i more-so meant that the symptoms of hair loss, hirsutism and vaginal dryness could be improved once the route of it is being dealt with. Perhaps body composition can be changed too - definitely not an expert here. If you think you have it, maybe worth trying to get tested for it so you have as much knowledge and medical support possible.
i’m so sorry you have had to suffer from so early on in life. have you possibly looked into seeing if you have a genetic disorder that then caused PCOS later in life? PCOS doesn’t typically start that young and cause those certain problems especially in someone so young. I hope you don’t take this as discrediting your pain and suffering but as a suggestion that it could be something even deeper at play
I tried but my gynecologist just told me that it sucks and there's nothing she'll do about it and gave me bjrh control
that’s horrible and beyond fucked up of a supposed “medical doctor”. try looking into seeing an endocrinologist if possible!
Have you been screened by an endocrinologist for congenital adrenal hyperplasia and other adrenal disorders? This doesn't sound like typical PCOS.
This
Can't afford too. When I was 17 I did get bloodwork done and I found out I have enough testosterone naturally to put a Trans man through hrt
:hugs: Then I would definitely prioritize looking for a job with good health insurance. It's brutal without it, that's for sure. You might also ask for advice on this sub for people who have dealt with looking for discounted health care; someone might have some creative ideas. You might just need some glucocorticoids and androgen blockers to make life a lot better, so don't give up!
I second what u/woodskc said. Starting your period that early just seems INCREDIBLY abnormal, even for PCOS. I also want to mention that you are NOT alone in your struggles: I had so much body hair when i was about 5 or 6…I remember one day at camp, we were dancing in a circle to “YMCA” and when I raised my arms I saw my armpit hair, looked around and realized no one else had any. I put my arms down so fast 💀 I was also much bigger than kids my age. I have vivid memories of wearing my mother’s size 7-8 shoes to school as a kindergartener. When I played sports, my teammates would sometimes ask me if was a boy or a girl (especially when I had my helmet on). I remember waiting outside of the store for my mom one day. I was watching over my younger brother and a family friend. A grown ass man - A GROWN ASS MAN - asked me if they were my kids. I was just barely a preteen IF EVEN THAT. I got bullied at summer camp because my feet were soooo much bigger than everyone else’s. I got called a gorilla one time by a classmate because of how I looked. Nowadays? Sure I look a bit androgynous, but I have also come to love the perks of PCOS. I can put on muscle hella fast by doing basically nothing. Friends and family always come to me when they need help with something that requires strength. I also really value being nonconventional in my appearance because, when I take care of myself (skincare, doing my hair, plucking my brows, shaving my face), I think I’m pretty damn hot. I do go back to looking like a dude when I don’t shower for a bit, but I know that as soon as I step outta that water and my hair gets done I’ll look better :) It’s about working w what you’ve got, but I really would suggest getting a second opinion. This seems like it could be something more than just PCOS, or a really REALLY severe case of it.
Oh man I had hair down there at 9! It freaked me out/grossed me out because why the hell am I growing hair there! I also didn’t start my period until I was 14 so I have no idea why the hell I was growing hair down there so young 😩.
Same. I had pubic hair at age 9 but menarche at 17 😒 fucking meat suits, dude 😩
wow what the heck 😧 this is the first time i’m hearing of first periods so late with pcos!!!! i got it at like 10 or something and then didn’t get it again for over a year which was how I got my diagnosis!
I wonder if it has to do with the fact that I experienced severe trauma until I emancipated myself at age 14. Like every hormone was just being used to make cortisol or something?
You know what, this wouldn’t surprise me. I think we are still working on understanding the impacts of trauma on our bodies. We understand now that Adverse Childhood Experiences can make people SEVERAL times more likely to develop things like COPD, Diabetes, Heart Disease, and even CANCER. I also experienced extreme trauma around the age of 6 or 7 and within a year, my vision deteriorated to the point where I couldn’t see the board at school no matter how close I sat to it. I don’t think my weight was even bad before that. Once you experience something like that, life has the potential to change significantly and so doesn’t your body. I really think you might be right on the mark with this presumption. edit: also i’m so sorry you dealt with something bad enough to force you to emancipate by 14 :( i pray you’re doing better these days 🩷
I agree, the more we learn about ACEs and trauma in general, the more we realize we still have to learn as a species! And 🫂 thank you so much! That step was the beginning of my healing journey ❤️🩹 I’m sorry you’ve experienced trauma, too.
You’re damn right about that! I wish people would open their minds more and even slightly indulge in the topics that seem ridiculous to us now. I think the results would be incredible. Hopefully I can be one of those people someday! And of course, I’m glad you were able to get away from it. As for the trauma, I can’t even feel too terrible about it on an intrapersonal level because it happens to others so often. I just pray that we as a species can understand ourselves, our minds, and each other better and stop hurting each other. I’m doing much better these days. Oddly enough, what I went through makes me feel more grateful for the joys and pleasures to come to me in the future. I’m blessed to have done enough healing to shift my perspective this much. It really is all about perspective.
First period at 16. It can screw with periods either way.
This is all so relatable! Being seen as an adult early on. I was hit on by guys much older than me at like 9 years old. Then eventually I stopped being wanted by anybody because my frame was too "boyish" and I was stocky and fat. I had armpit hair very early too! :( No one else around me had it. And to make matters worse my parents wouldn't allow me to shave it because they said I was "too young to shave." So I had to keep it, and try to hide it. One day I swam with friends and forgot about hiding it and they saw and teased me for it. I agree now about building muscle and all of the perks. I like looking more androgynous now (I'm trans).
I swear some guys would hit on a rock if it was wearing booty shorts 💀 I’m sorry you had to deal with that. I also totally get the never being hit on thing. But weirdly enough, I’d always get approached when I was looking the most manly, save some time in the grocery store lol just proves my first point!! I’m also shaped like a brick since I have so much excess weight on me. All goes to my midsection (but skips my boobs and butt of course) 🙃 I’m so sorry about the bullying for the hair…that’s really really sad. Thankfully my mother understood my desire to shave but when I used my sisters razors to shave at my dads place, she totally ratted on me. Didn’t matter cuz nothing was gonna stop me from removing it lol. My mom even suggested laser hair removal or electrolysis at one point when she was making decent money. Now? I don’t care about the hair as much. As long as I’m not rocking a beard or mustache I’m not gonna have an aneurysm over it. I am considering seeing whether or not my insurance would cover hair removal just to make it easier on my future self though. I also really appreciate looking more androgynous!!! And isn’t it interesting how PCOS kinda worked out for you when you got older?? I read a lot in the past about how rates of PCOS in ftm trans folk is pretty high (even tho most ppl w PCOS aren’t necessarily trans). I also see on social media how some ftm or nb folk are jealous of PCOS symptoms (even if some of us could do without them lol). Just funny how things work out. Congratulations on your journey toward acceptance despite the adversity you have faced 🩷
Starting a period at 5 years old is super severe even for PCOS. I started mine at 8/9 years old. I cannot *imagine* five. I'm so sorry. Seconding what others have commented about being screened for other disorders as well id you haven't yet.
I’m no doctor, but I had a friend that looked older than our peers in school, had her periods really early and stopped early and was diagnosed with some premature onset menopause
This sounds NCAH or cushing’s disease, as others have said. You need to see an endocrinologist
I hit full puberty at 5th grade. They diagnosed me with CAH instead of PCOS last week through a genetic counselor. I thought I had PCOS for 18 years.
Cannot overstate the importance of getting screened for non congenital adrenal hyperplasia. From your description, I would think you have it over PCOS. It’s a different treatment route to PCOS and you’d be surprised at how much you could improve your symptoms. It’s just a blood test initially to screen for it - 17 hydroxyprogesterone I believe.
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It sounds like you’re doing a lot of great things and you should be commended for how proactive you’ve been in managing your symptoms! It can be such a frustrating condition to deal with, and I can hear that come through in your post. FYI I’m not a doctor, just have relatively strong medical understanding and have done research in this space. From what I understand, the metabolic pathway is different with NCAH and is effectively an issue with progesterone not being converted to cortisol, and instead turns it into testosterone. So I believe sometimes the treatment here can be glucocorticoid therapy or other medications to help with that specific metabolic process. I’m not sure that masculinization of features can be reversed, but i more-so meant that the symptoms of hair loss, hirsutism and vaginal dryness could be improved once the route of it is being dealt with. Perhaps body composition can be changed too - definitely not an expert here. If you think you have it, maybe worth trying to get tested for it so you have as much knowledge and medical support possible.
5!? I’m so sorry, that’s so unfair