I am 13 years old. I have had horrible acne since I was 8 years old. That is so strange because I don't know anyone that has had it so early. I have really thick body hair(especially on my stomach and my lower back.) All this makes me think that I might have PCOS. One thing though- I know that being overweight is a symptom of PCOS, but I have always been really skinny(underweight.) At one point my acne was so bad that my mom took me to get a blood test to see if I have PCOS. Well the results came back and they said that my hormones are perfect and everything else is just right and they said that I definately don't have PCOS.I don't believe that. My period has come totally iregularly since I started it(two years ago) and it usually lasts about 8-9 days, which is not normal. Since you guys probably have experience with PCOS, could you tell me why the results came back so normal if I have all these classic symptoms of PCOS. Also, could you tell me if sometimes people with PCOS have tests done and they come back showing that they don't have PCOS when in reality they do. Another thing is could you tell me if people with PCOS are sometimes really skinny( like skinnier than all the people in their grade.) Thanks so much!
You do seem to exhibit all the classic symptoms of PCOS. And being skinny doesn't matter. Check out the Thin Cysters forum!!!
I went to 8 (count 'em!) doctors before the correct tests were done and was finally diagnosed. For a list of all the things you should be tested for click on "Newbies Start Here" at the top of the page. That will give you a headstart.
Anyway, just wanted to welcome you and tell you that a lot of your questions will be answered on this website.
Take care,
Dani
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There are other things that could cause your symptoms as well as PCOS. You could have an adrenal disorder. How are your parents through all of this? Are they supporting you in helping to find out what is wrong? If so, you've won half the battle. If not, it may be very difficult to keep going. Unfortunately, at such a young age it's hard to get anything done with doctors without your parents backing you up.
The adrenals are little organs that sit atop your kidneys. They help regulate the "get up and go" hormones in your body, such as adrenalin and natural steroids. Sometimes you can have disorders associated with the adrenal glands and have symptoms mimicing PCOS. There is one disorder called "Late Onset Congenital Adrenal Hyperplasia" which is all about a lack of a certain hormone that causes an imbalance. You can read about it here: http://www.geocities.com/HotSprings/3532/
Ask your doctor for an "ACTH stim" test. This test will let them know if you have LOCAH, and a good dr. will check other things like the hormones listed on the above page.
If you come back negative for CAH, chances are it is indeed PCOS and it is just so early yet that it will be difficult for a doctor to truly diagnose based on numbers.
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Hi Chelsea Yes, it is possible to have PCOS even if you're thin and your blood tests come back as "normal".
I was probably the thinnest child ever to walk the earth! I didn't start menstruation until I was 15, but I had acne at the same time as everyone else, starting around 12 or so. I remember searching for Size 1's when I was 13 and 14. I could still fit into a girl's size 10 or 12, but I was already 5'4" so girl's sizes were waaaay too short! My mom finally bought me some bras (I think they were like size 30AAA or so, didn't really need them but I was definately the last girl in my class to get them, hehe!) when I got into high school because she felt sorry for me! Ugh, people can say what they want about "I wish I was skinny", but believe me, I know it is absolutely no fun being *THAT* skinny! On the bright side, I'm now at about the ideal weight for my height and have a nice figure, except for the extra 5 pounds on my tummy! I was about 18 when the rest of my body finally caught up to my height!
My gyn is still a bit iffy on whether or not I have PCOS, but I'm sure I do. I talked her into letting me try metformin. I've only been taking it for two weeks, but I think it is already working for me. All the hormone tests she's done have come back "normal", but I did have a transvaginal ultrasound that showed cysts on my ovaries. I doubt you would want to have that done at your age!
Do you know what tests they have run? One test I haven't had that I'm hoping my new fertility specialist will run is Day 3 LH-FSH. This would be a blood test done on the third day of your period, so you would know if you might have had this or not ... you would have been instructed to call the doctor when your period started. For normal women, the ratio LH:FSH is about 1:1. For (untreated) PCOS women, it is usually about 3:1. There are many blood tests that can be run.
Welcome to SoulCysters, though I wish you didn't have to be here!
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Hey Chelsea, It sounds like you're in the same boat I was when I was your age! All I can say is that you and your mom need to arm yourself with information and then go to the doctor! Read up on all the tests and what they're for, know all you can about PCOS. I've had the same "everything's fine" tests, from my gynocologist. I don't know what kind of a doctor you went to, but I would check to see if you're able go to a endocrinologist. If she isn't already, get your mom on this web site with you so she can ask questions along with you. Best of luck, and let us know how you're doing!! Karri
Good thing you are a smart cookie at such a really young age!
Think of it this way, you are ahead of most PCOS cysters in that you are figuring this out now.
Try eating healthy right now...just eat what you want but cut out lots of sugar and junk food. Try to excersize a lot too (running around).
My sister went through this...she didn't get any belief until about 5 years ago (she is about 31 years old).
Please enjoy your youth, don't worry too much. Just concentrate on making good eating habits. DON'T go on diets! You are too young! Also, all the drugs they can give you for PCOS are a last resort thing. I myself only take the pill since my last period without it went for 5 months straight without stopping. I would not take it if it went back to being normal.
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Chelsea - yup, you can be skinny and have PCOS! I was diagonosed when I was in my late teens, and I was always underweight for my height. JulieC, my story is almost exactly like yours - acne very young, always underweight, getting a bra when I went to high school because I was going to highschool, not because I actually needed one! -laugh-. And it's amusing - I'm a Julie C too... Julie Christine! What's your C stand for?
Anyway, Chelsea, hang in there, and get your parents to bug the doctor for you. I was lucky enough to be diagnosed on my first try, but that's not true for most people. There's a lot of tests you should have done in the FAQs under the "newbies start here" button (http://www.inciid.org/faq/pcos.html section 2.9 and 2.10) - not everyone is abnormal for every test, so maybe see if some of those tests weren't done with you. Hang in there, and good luck!
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Hehe Mazlynn, what a co-inky-dink My middle name is Lynn, C is my last initial (not going to post my last name, I'm careful with that online). I had nothing resembling hips or breasts for a long time. When I was in seventh grade (12yo), I was waiting tables at a fundraiser. My mom made me get this awful short haircut, and some a**hole old guy asked me if I was a boy or a girl. :o I just walked away and cried later after I got home.
It's not easy to "pick-up boys" when you're still built like one! But like I said, everything finally caught up around the time I turned 18 ... high school and college were *TOTALLY* different experiences for me in that area, hehe
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Thanks for the information everyone!
My mom actually had the exact same thing as me. She is in her late 30s and she still breaks out sometimes. She had to have hair in a lot of places removed with electrolysis. The only thing that helps control her acne is birth control.She is still thin for her age and a bit underweight. She has had many tests done for PCOS but they have all come back showing that everything is normal. My mom had two miscarriges before me. She has all the symptoms of PCOS. Another thing is that most of you said that you started developing late. Is that a symptom of PCOS? I started developing much earlier that most girls I knew(4th grade.) Is PCOS hereditary?
Kari- I actually did go to an endocrinologist when I got those tests done. Then I went to a gynocologist to get birth control to control my oily skin and acne.
Shenacat- My mom is supporting me. But ever since we got those normal tests results back she has sort of focused on acne medication and other methods to get rid of acne more than anything else.
I developed early in getting breasts and a bubble butt at 10...I got my first period at 13 or 14.
If you have bad acne, hopefully your mom will get you on some accutane. My friend Nikki had that at your age and i didn't...she has no scars and I had tons (got procedures to soften them).
Number one thing is to eat healthy and excersize.
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It's a good thing your mom is supportive Chelsea. Looks like she will back you even if the doctors don't.
Look into that LOCAH I mentioned. It is important to rule that out, especially if all the tests for pcos came back normal. What tests may I ask were done? Specifically? The doctors may not have done them all.
Also, we have noticed it is a good idea to get copies of all the tests the doctors are doing. Sometimes, they say something is normal when it is not really normal. Having the sheet in front of you can help you because you can reference the results with the textbooks and see for yourself if you really ARE normal, or if the doctor is just outside of their experience. We will be able to help you with what results are normal and what aren't.
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PCOS+IR, Hypothyroidism
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I think the actual diagnosing test for PCOS is a (sorry to be graphic but) vaginal ultrasound to look at the ovaries and see what they are doing. Officially all my test results were within normal lab range but the ultrasound showed follicles gallore and my hair's still falling out by the pound. Weight is not always an indicator of PCOS--I am average weight and average height and still have problems. I was a strange shape as a young teen and flat as a board; my weight & acne came in adulthood. It definitely sounds like something is up with your hormones! Sometimes doctors will not do enough tests or they don't do the right tests. My ND says the best way to test is to take hormonal measurements over the course of a month (or menstrual cycle) by saliva. And cysters, correct me if I'm wrong, but usually when you do hormonal tests while taking the pill, the results show normal anyway? Get copies of your tests--that's really important...I'm just now finding out that doctors missed certain things of mine like a year ago.
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hi,i know that when i was 13-18 i had irregular periods and lots of acne and i really was not over weight.i was a little chubby but not over weight.and i started noticing hair in wrong places when i was about 18 and then i did not know about pcos did not even think something was wrong but as i got older i would not have periods at all.I had terrible back pain and cramps and i weighed 130 and i easly went up to 175 by the time i was 22 i am now 24 i was just diognosed a couple years ago.So what i am getting to is as i got older the symptoms got worse and it seemed the more i did not have a period the more weight i gained and i always thought that was weired.And as time went on bifore i went to a doctor i actually felt a mass of something i felt so heavy i knew something was up.I went with my insticts.I seen several doctors before i was diagnosed.And they would tell me i had a yeast infection and also actualy had an ultra sound and said nothing was there but i knew something was wrong.so go with what you feel you know your body better than the doctor.You might want a different doctor. thanks for listening sorry for blabbing on but i thought it might help
Hi Chelsea,
You may have pcos but your problems could also stem from being underweight, if your weight is below a certain level then your periods are affected and in some cases it also causes you to grow body hair as a way for your body to keep warm. I have heard of this often happening to girls who have anorexia, you say that you are a lot thinner than girls your age so this could be the problem. Persist with the Dr until you find out what the problem is and hopefully for you it will be something that can be cured unfortunately to this day pcos has no cure, we all have to just live with it.
Your opinions 
Yes, it is possible to have PCOS even if you're thin and your blood tests come back as "normal". 
Good job educating yourself! 
unfortunately to this day pcos has no cure, we all have to just live with it.
