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PCOS vs just polycystic ovaries

Discussion in 'PCOS Community' started by Kay777, Nov 3, 2010.

  1. Kay777

    Kay777 Guest

    hi all,

    so i had an ultrasound done today, and it looks like i have a bunch of small ovarian cysts. it was hard for me to go on with the rest of my morning--i felt vindicated that my hair loss has a cause but also so, so upset and sad about what the future will hold. i had to stop at a grocery store to stop the tears from flowing and collect myself before going to work!

    i have to go back to the gyn for my official results--i just met with the technician today--so i'm not sure what my diagnosis will really be. but, as i've learned with my hair loss journey, doctors can certainly misdiagnose!

    i know there is a difference between PCOS and just polycystic ovaries. but what i'm wondering is whether the effects on hair are the same. i have male patterned baldness and some light hirsuitism (my hair grows really fast on my legs and underarms, i have heavy arm hair despite being mostly of german ancestry, and i have some additional hair in unwanted places).

    for PCOS-ers out there, would you treat your hair loss any different than if you just had Androgenetic Alopecia without the PCOS diagnosis? i know my gyn is considering Spironolactone for me and possibly BCPs, but i don't want either. i'm already taking finasteride and am going to see if that's helpful to me after 6 month and 1 year marks. my derm says that Spironolactone isn't tolerated as well as finasteride, and since finasteride already has given me side effects, i can't imagine adding anything else to that regimen.

    lastly, what about rogaine and PCOS/polycystic ovaries? is rogaine more or less effective with either of those medical conditions? i really don't feel like trying it, but i guess i could be persuaded to if there was a strong argument out of someone here.

    thanks for reading, as always. i don't know what i would do without all of your amazing support!!
  2. dying curls

    dying curls Guest

    There are no difference between PCOS and "just polycistic ovaries";
    PCOS stands for polycistic ovaries syndrome.

    What is important though is to take a blood test to see how it affects your hormones.

    The cysts are little eggs that haven't fully matured and could not be release by the ovaries.
  3. kimm

    kimm Guest

    Well, not to be a med pusher, but I did notice a difference when I went on Fortamet (extended release metformin).

    With PCOS, there's a good chance you are insulin resistant, even if you don't register on blood tests. My big clue that I was (beyond having pcos) was that I tended to get very hypoglycemic if I didn't eat for a long time and especially if that time was after eating something high carb. My cycles were always regular and my weight (after high school at least) was normal.

    It's something else to explore. Otherwise, you can treat it like traditional Androgenetic Alopecia and many pcosers to. I do think having a diagnosis gives you other factors to consider when treating and maybe more options!

    This is if you have PCOS. Did the doctor have an opinion?

    Either way, hang in there. Look at it as a clue and a piece to the puzzle, rather than purely bad news. (it does suck, but at least you have some more info than you did before!)

    ((hugs!)) - kimm
  4. dying curls

    dying curls Guest

    you're taking finasteride and you still have unwanted hair?

    Finasteride is a very strong antiandrogen, usually spirolonactone is tolerated better! I am surprised at what your doctor said.

    Another cause for PCOS (you can just have PCOS) is a thyroid problem (antiandrogen wont work in that case, thyroid meds will) or other hormonal syndromes. So you need to be sure that your PCOS is just classic case of PCOS and does nto mask any other underlying condition.

    that's crazy i see more an more girls with PCOS, more than half of the girls I know and still they say it only afects 1 in 10 girl....
  5. kimm

    kimm Guest

    I wonder how many women with pcos also have abnormal thyroids.

    I'm slightly hypothyroid and have nodules. None of the doctors I've talked to seem to believe there's a link, but I'm not so sure myself.

    Which reminds me, I need to get that stupid gland checked again. I've been beat lately and I think my pcos symptoms have been a tad worse. Would probably make sense to see if that's the culprit. :/
  6. Kay777

    Kay777 Guest

    thank you for all this information to consider! i will bring up your points with my gyn when i get my official results.

    dying curls: my gyn says there is a difference between having a syndrome and just having cysts. i will try to get her to clarify this next time i meet with her. also, the finasteride is something i've only been taking for 3 months. i actually did not expect it to have any effect on my body hair--just on my male-patterned hair loss. i'm not sure why my derm prefers finasteride to Spironolactone, but i know that some side effects with Spironolactone (where you have to watch your diet and your potassium levels) can be annoying. with finasteride, the only side effects i see are rather manageable (oily skin, bigger pores, and occasional slight headaches).

    kimm: i got a fasting glucose test but have not been told the results yet. i will definitely bring up thyroid stuff with my gyn and/or endo both. i've had thyroid testing done, but i wonder if having PCOS will prompt my docs to do more testing. i will also let my gastroenterologist know about the PCOS just to get his perspective.

    i really appreciate the replies! i will try to keep a positive outlook on having a new piece of the puzzle. that was a great way to spin things. :)

    hugs back!
  7. Interesting thread, I will follow.

    I too have PCO but doctor just sort of laughed when I talked about hair loss and PCOS.

    Because my blood work is normal. Ratio between free testosterone and SHBG was very good too.

    I had my children ten years ago, and had no problem getting pregnant, but maybe PCO can set off later?

    I have lot of hair on my thighs, but doctor laughed and said that was because i have such thick head hair, and that it must go hand in hand. I wonder... I thought it was the opposite. More about male/female than "all over thick hair or not".

    Gynecologist wouldn't hear about other symptomes, and said BC could lessen the body hair, "bye bye". She said it before the blood work was even back from the lab.

    This is the best help I can get in this country. That she took the test at all, was a BIG improvement for me.

    PCOS is not treated in Sweden, only if you want to get pregnant and can't. Doctors are told to tell patient with hirsutism and male hair loss that virilism is GREAT (good for bone and other - not head hair though...).

    I really wonder if my PCO (not clearly confirmed, two docs just hummed and would not answer questions as a normal human would) could be a cause of my hair loss.

    Indeed I have thick hair still. All over, measured in a pony. But my temples, corners, hairline and parting do not look like they do amongst other with my kind of thickness, and not like they did look some years ago. Having thick hair is hell when talking to doctors, since they do not believe in any hair loss, but starts to talk about hair life cycle instead. I used to have VERY thick hair, losing 20-25 hairs per day. But now I lose app 100. 100 is normal, docs says, but 4 times the normal is not normal, especially not together with thinning and the shedding mostly coming from front.

    And if I shed like now for longer, I will notice on my pony too.

    I think I look ridiculous with thick hair but thin corners, temples, hairline etc.
  8. Dance288

    Dance288 Guest

    Kimm- I'm curious about you being on Metformin and not having any blood levels show up "off balance." Mine didn't show up funny either, yet I feel like I have the same hypoglycemic episodes you mentioned. How did your doctor decide to put you on Metformin? I may bring that up next time I go in!
  9. Kay777

    Kay777 Guest

    hi hjärnröta,

    i have the same problem. i have been laughed at by doctors when i talked about hair loss in the past. however, at this point, even doctors can see my temples are bald and my hairline is receding. it was something i noticed 12 years ago and no one cared until now when i have zero hair left on my temples.

    doctors in the US don't want to treat PCOS/PCO either unless you have trouble getting pregnant. my insurance does not cover things that are not medically "necessary," so i'm not sure where to go from here. i already pay for finasteride out of pocket ($35USD per month). my insurance does not cover birth control (!) either.

    if you have confirmed PCOs, then i would strongly imagine your hair loss is related to that. the fact that you have a lot of thigh hair may be related to PCOs, but i'm not sure. i have extra hair in all the places that more guys have it than girls (underarms, forearms, small part of your back, face, from the bellybutton down, etc.). happily i don't have chest hair, though.

    thank you for sharing your story!
  10. dying curls

    dying curls Guest

    weird that oily skin is a side effect of finasteride....ooily skin is due to high androgens that goes with pcos (high androgens give you oily skin, hair loss, it can give you acne, and unwanted hair on you chin/belly/back and other places women usually don't have hair).
    Finasteride block the androgens (that's why it's useless to get a blood sample while on it) and the skin becomes dryer).

    some women have cysts on their ovaries and nothing else (no symptoms of androgeny like hair loss or unwanted hair). Usually the cyst are less numerous though.

    I guess your doctor think the syndrome happens when the symptoms are present.
  11. dying curls

    dying curls Guest

    Hair loss in PCOS is Androgenetic Alopecia too. Androgenetic Alopecia is treated the same way wether you have or don't have PCOS.
    The way you describe you unwanted hair strongly suggest PCOS that and the oily skin. Wait for what the doctors say, but everything points out to PCOS here or an hormonal issue.
  12. Thanks for your reply :)

    I don't know if I have confirmed PCO. The gyn (two of them) where very non-clear in conversation (is that sort of communication learnt at "doctor-school"???).

    I was ultrasounded, and the doctor said "no PCO-ovaries here". Afterwards, she said "polycystic ovaries" and I said "but you said 'no cysts', or?". "No, you have PCO-ovaries". I asked no more, since I clearly could tell I would not get an answer.

    And only one ovary was checked, since the other one could not be seen proper due to *cogh* gas.

    The first doctor said "I can see lot of follicles here, all look good". I did not ask anything, since I did not know about PCO or anything then.

    I have menstruation though. And I HAVE had more hair than others, all my life, it is just a bit more now. I had lot of hairs between belly button and down, that disappeared in my late teens. Now I have not hair like my husband there, but several very coarse ones. husband has a lot more, and they are finer.

    My mother said she got more and more hair (unwanted places) when she grew older. She is 64 now. She has no problems with hair loss. She easily got pregnant with me, but she did not get menstruation back without hormones after me, to be able to get my brother. After that, she had normal menstruation until 55 yo or so.

    I have not grew hair in NEW places, it has just gotten more.

    I did hormone tests, but I drank one cup of spearmint tea every day during that. I wonder if I should take tests again. Though doctor will most probably say that tea can't have anything to do with this (probably laugh at the hypochondrian [me] at the same time).

    This is just so confusing.
  13. kimm

    kimm Guest

    Hi Dance -

    I was diagnosed with pcos about 10 years ago and since I didn't show up on tests as being insulin resistant, they didn't want to treat it.

    I kept reading about the fact that you can be insulin resistant and have it be "under the radar" so to speak. I couldn't find a doctor to agree, so I gave up.

    After having kids, my hair took another dive, even though I was taking Flutamide. I FINALLY found two docs who believed that this was the correct way to treat pcos. My general practitioner was actually the one who told me that insulin resistance doesn't always show up on tests. The more we talked about my symptoms though, the more he believed I was. His theory was that if I could stabilize the swings in my blood sugar that my hormones might normalize.

    A few months into being on Fortamet, I noticed a steady decrease in my testosterone levels. I also had trouble getting doctors to listen to me about those too, since I fell within "normal" ranges. They were obviously not normal for me since I look like I lift weights even though I don't, and I had facial hair issues and hair loss. I hate docs who just read the ranges and discount personal experience.

    So for me it's been a good experience. I also don't get that sick/drunken feeling as often anymore when I wait too long to eat, which is nice.

    Hope that helps! :)
  14. @Kimm: Aren't there any test that can detect high level of insulin in blood? Or must they check sugar only?

    I have had the hypoglykemia, rather big problems with that, but not anymore since I eat no white flour, sugar and so on. But my hair loss started after I got rid of the hypoglykemia :dunno:

    I thought maybe I was too sensitive to insulin, not the opposite. After checking blood sugar during hypoglykemia attacks, I saw it was most normal, and then I thought my hypothalamus reacted to blood sugar lowering, by act as it is too alarming low when it is not.

    I also have had other symtoms that indicate a hypothalamus reacting strange. like temperature regulation, stress problems (may be adrenal fatigue) some hypothyroid symptoms that are now gone.

    Now I don't know what to think.
  15. kimm

    kimm Guest

    There is a glucose tolerance test that I've taken numerous times. They just never turned up anything abnormal. Maybe just slightly hypoglycemic.

    So it seemed counterintuitive to use an insulin sensitizer, but it has really seemed to have helped!

    I had some higher than normal cortisol levels (not sure if they still are) and as a result, reacted pretty severely with even a very low dose of natural thyroid medicine. I haven't checked back on my thyroid levels in a while, but am slated to do so next month. I'm pretty sure mine probably plays a role in my overall symptoms, I'm just not sure what to do about it.
  16. Oh, this hair issue and general bad health, is so confusing and destroying. I had cortisol levels that pointed to adrenal fatigue.

    Don't know how they are right now, it is not easy to get a doctor to let me take tests, even if I pay myself.

    Funny is, that I am more destroyed and devastated from hair loss issue, than from having bad health with fatigue. Sounds superficial maybe. But I had gotten used to being fatigued, so the hair thing was just a final smash in the face from life.

    Ironical, I am MUCH better in the fatigue now. Everything is better, but not hair issue.
  17. Dance288

    Dance288 Guest

    Thanks Kimm! I'll be sure to talk to my doctor about it when I go in next month!
  18. el123

    el123 Guest

    Hi Kay,
    If you have PCOS then you should firstly get that treated. The underlying cause is probably insulin resistance. You should get this addressed first - because if you don't your PCOS will only get worse.
    Luckily I managed to curb my insulin resistance (with meds, healthy diet and exercise) and came off the metaformin over a year ago. But I still have a long way to go with the hairloss...
    good luck.
  19. paula_rosalina

    Mar 2, 2009
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    i have a very similar story as you have.
    I had an ultrsound and the doctor told the same things that yours told to you.
    At first de doctor told me that i had everything ok. And after that he asked me why i was doing the exame and i told him that it was see if i had policystic ovaries. Then he said: "let me look again. Oh yeah, i see that your ovaries are policystic :)S)". I asked him why he had told me before it was all ok and he didin't answer. :lost:

    In a previous exam, in january, i was told i had multiple folicules in my ovaries but it was normal :dunno:

    I had regular periods ALL my life, never missed a period, always about 30 days apart. I have heavy periods but many woman have. I don't have excess hair in my body, i almost have no hair in my legs, pubic area, armpits...
    i had no trouble at all getting pregnant.

    so...i have hairloss and normal bloodwork. Only my ferritin was a bit low and my DHT on the higher side of the range.

  20. Strange that they do not say anything. I think they maybe are thinking that they should not worry. And that if it was a problem, it would be seen in other areas (as hard to get pregnant, hirsutism and so on).

    Is it possible to test DHT in blood then? Nobody has tested me for that, or said it was possible or relevant.

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