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What criteria was used to diagnosis you with PCOS?

Discussion in 'PCOS Community' started by Kristi, Jul 27, 2011.

  1. Kristi

    Kristi Guest

    I have been diagnosed with PCOS and according to a document that my RE gave me from the American Society for Reproductive Medicine women who demonstrate two of the following 3 three characteristics, in absence of other specific causes of these problems, meet the diagnostic criteria for PCOS:

    1) Chronic anovulation

    2) Chronic Hyperandrogenism

    3) Polycystic appearing ovaries (PCO) on ultrasound

    I do not have Polycystic ovaries and I'm not sure about the anovulation, but since my cycles prior to Metformin were at times irregular, then I believe I was may not have been ovulating. Plus, we have not been careful on several occasions and no oops have occurred. I had a daughter without any problem when I was 25, but I was much thinner then, so the extra weight is probably working against me now. I definitely have just about all the other symptoms of Hyperandrogenism. My worst symptom besides hair loss is Keratosis Pilaris, which looks like acne. My RE says that Keratosis Pilaris can be related to PCOS. I may have some actual acne, but not sure. I definitely have oily scalp/skin. And I also have extra hair (hirsuitism) where I shouldn't have it (chin, tummy, and toes).

    All my tests were within the so called "normal" range, except that I have insulin resistance that had already turned into Diabetes by the time I was diagnosed.

    I am curious to know what criteria was used to diagnosis you with PCOS? Do most people diagnosed with PCOS have high levels of total and free Testosterone?
  2. lemongrass

    lemongrass Guest

    Hi Kristi, may I ask whether this extra hair on your chin, tummy and toes is thick/obvious?

    I'm going to be tested for PCOS soon. My doctors have never brought it up but it's a possibility since I have the hair loss + probable irregular periods (had them in the first couple years of starting my period, but now I'm on the pill so I don't know whether they'd be regular by now). I don't know of any other likely explanation for irregular periods. I also have some mild KP, which I didn't know could be associated with PCOS until now. I find myself wondering whether the hair I have is excessive, so that's what I'm asking about yours. In all the hirsuitism pictures I've seen, the hair is very extreme, which isn't much help.
  3. dying curls

    dying curls Guest

    I started with almost "invisible" symptoms and after 21 they gradually increased and became more obvious..For years docs send me back home telling me it was impossible i had a problem etc...

    Anyway you dont need much to be diagnosed normally but many docs even gyn arent aware PCOS can affect a veriety of women, thin or fat, hairy or not, bald or with a full head of hair.

    My sister was diagnosed after 3 failed IVF (you thought RE would have know better than waiting that long to run a complete check up on her). She has no symptoms, no unwated hair or hair loss, regular periods but she has ovarian cysts and her ovulation is not good.
  4. lemongrass

    lemongrass Guest

    That really confuses me. Isn't PCOS a syndrome used to diagnose a set of symptoms that have no other explanation? So if you've only got one (acne, for example) and no ovarian cysts, how can any reasonable doctor decide you have PCOS? And even if she does decide you do, what then? There's no medication for PCOS per se, only medications to treat the symptoms ... and if you've got none that need treating (or something like acne that can be treated with BCP or accutane or topicals), it's a pointless diagnosis, isn't it?
  5. Kristi

    Kristi Guest

    Hi Lemongrass,

    Sorry for my slow reply. I was trying to locate a website that I came across some time ago that was quite useful in helping to decide if what you are experciencing is within the realm of normal or not, but I have yet to find it. I will post a link if I happen to come across it at a later time.

    I would say the hair is thick. I gently shave it from all of these areas. I simply can't afford more permanent hair removal options at this time. As for being obvious, it depends. I only have approx 5 of these hairs under my chin, but 2 years ago I only had one stray hair there. The fact that it had increased concerned me. If you were to look closely you would notice, but since there is not a large volume of it then it's not something anyone would notice unless they were looking for it. Same with the hair on my toes. The hair on my lower tummy is the worst. There is a much greater volume of it there. Probably 20-30 or so hairs, but since I keep it shaved it's hard to tell anymore. It just seems like a lot to me. I am quite sure that it would be very obvious if I let it grow out, but I don't think it is as extreme as some pictures I have seen though.

    As for the KP, it is very common and it is supposedly genetic. If you've had it for most of your life and it is mild then I would not be very concerned about it. I have some KP that has been with me since childhood and I am now 39. However, I developed some additional KP in recent years (didn't pay attention to when it started) and it is on my chest, which is a new location for me to have KP. It is also moderate to severe at times, so I really think it is related to my hormones. Also, my daughter never had KP until she entered puberty and it is quite severe. She is also showing other major signs of PCOS herself, so I am going to have to take her to the doctor soon I think.
  6. dying curls

    dying curls Guest

    I dont understand why the part of my post your underlines is confusing, that does not go against what you are saying...when i say you dont need much...it means sometimes you can have no visible symptoms and still have PCOS.

    Many doctor think women with pcos have weight problem and irregular periods, some are more aware pcos can touch many women.

    I was laughed at several times when i went to see doctor for it "you have regular periods, you are thin, you have a clear skin, and the three hair you have on your chin don't mean anything" and they never run tests on me...Then i got my blood drawn finally, only my testosterone was slighly increased all the other androgens were in range and the endo refused to do an ultrasound because she said i t was impossble i would have cysts because the imbalance was not significant enough...It turned out i was right and the docs i had seen were wrong...

    Yeah Pcos is a syndrome that can cause different symptoms. I never said the contrary...did I??
    My sister's only "symptom" are the ovarian cysts. I have friends who have pcos and no external symptoms. Some who have acne but regular periods and stil have pcos..

    And no PCOS is not a syndrome used to diagnose a set of symptoms that have no other explanation, it's not a diagnostic by default...I am not sure what you meant by saying this...Again i reiterate that adult acne (i am talking about acne and not just a couple of spots on your face) in women is caused by some hormonal imbalance 90 percent of the time.It's very rare to have acne on it's own when adult.
  7. dying curls

    dying curls Guest

    Oh and also, there is no cure for pcos (i am aware of it) there are treatment available for the symptoms...but if you are one of the lucky girls with no visible symptoms then you dont need any treatment...

    Many women realize they have pcos only when they try to get pregnant without success...that's how my sister foud out. Now she adopted a baby and still is not treated for pcos because she has no external symptoms and her periods are not painful...yet she still has it.
  8. dying curls

    dying curls Guest

    I see you are going to be tested for PCOS.
    Be aware that if you are tested while on the bcp the ultrasound will probably come bacl clear of pcos. I had an ultrasound while on bcp and i had no cysts. BCP make them disappear and it also tends to help your hormones.

    Are you going to stop the pill to get screened?

    Also most women with pcos dont suffer from hirsutism...and when it's the case it's not always extreme. All of my friends who have pcos have no external symptoms or when they have one it's moderate acne. Without treatment i have hairs on my chin, they appeared around age 18, i had only a couple for years and around age 21 more appeared, but they were fine...at the same age i had fine hair appearing on my toe too but nothing shocking...people would not notice. For the chin i had to pluck them once a week. Because my symptoms were light doctors thought it was just idiopathic hirsutism (not hormonal). i knew it wasn't since i saw a progression and i had not unwanted hair until age 18.

    What i was trying to explain is that there are as many forms of pcos as women who have it.
  9. dying curls

    dying curls Guest

    As for other explanation for irregular periods....most hormonal imbalances in women will do that. Hirsutism can also be caused by a thyroid problem and other imbalances than pcos.
  10. lemongrass

    lemongrass Guest

    Thanks for that, dying curls.
  11. dying curls

    dying curls Guest

    I guess we need to define what a symtom is...
    I would say with PCOS you can have external symptoms : acne, unwanted hairs, weight gain, hair loss, acanthosis negrican
    Internal symptoms : cysts (if we can consider it as a symtom i am nto sure, irregular and/or painful period, hypoglycemia....

    Many pcos girls have no or very few external symptoms...those who suffer hair loss are a minority, acne is much more common...

    You cannot be diagnosed with "just acne", but many pcos girls have only acne as an external symptoms...but to be diagnosed with pcos you need to run blood test and/or an ultrasound to see if it's the underlying cause of the acne... Acne can often be the only external symtom but "internal symtoms" and hormonal abnormalities will accompany it.
  12. lemongrass

    lemongrass Guest

    I always dismissed PCOS without much consideration because I lacked the external symptoms and I thought the hair loss was straight FPHL (even though my hairloss is unpatterned and includes the nape). I also didn't give much thought to that diagnosis until the past few months.

    But now that I'm thinking about it, it seems possible. I am just waiting for this appointment anxiously to get tested for everything!

    Some of them are easy to say no to (acne, weight gain, acanthosis negrican), but some are not as clearcut. Now I'm asking myself things like
    - Is this a normal amount of hair?
    - Is this a heavy period?
    - Is this an abnormal amount of period pain?

    Soon I will know and I can stop wondering. On the one hand, I am scared of it, but on the other, it will be nice to have a definite cause and then maybe some treatment for the hair loss (and if it's just Spironolactone, at least I will know I haven't been taking Spironolactone for no reason).

    Anyway, I will stop going on about this and will not talk about it until I finally have this appointment and find out.
  13. dying curls

    dying curls Guest

    I hope you get your answers....

    However i repeat seeing also that you are on antiandrogens...pcos or not if you are on the bcp and antiandrogens it wont be possible to screen you for pcos unless you go of them....

    those are regular pcos treatment and keeps your hormones and ovaries in check,it means that if you do have pcos and are on those treatment all your test will likely come back clear of pcos ..this means the treatment id working...

    So i am not sure how it is possible to detect pcos (maybe also so others androgen related imbalances) when on this treatment..

    With diane35 and Spironolactone, you're supposed to have regular or no periods (antiandrogens will do that as well, but it's nothing to worry about), unwanted hair are supposed to disappear, same for acne and oily skin, and if you are lucky your hair loss will stop (hair loss is more difficult to take care of pcos or not).

    I never had painful or irregular periods. I stopped my treatment once because my endo told me it was impossible i had pcos and that i should be fine off the meds now (she thought it was just a temporary imbalance... :thumbdown2: )...and during the few months i was off treatment i experienced painful periods for the first time of my life, still regulars though...I guess everything is relative...there are no rules...You will feel what is normal or not for you (unless you had it since puberty) especially if you have a late onset of pcos and can see a difference with before.

    I hope this is not pcos but at the the time..having it give syou more answers as to your hair loss...

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