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  1. #16
    Registered User purple310's Avatar
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    Hi I'm a Korean American cyster new to this board. I have been TTC without success which led me to find out more about PCOS on the Internet.

  2. #17
    Registered User kyung75's Avatar
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    Hi skybluezoo and purple! Welcome! This is not a very active board, but I have been looking for other Korean Cysters out there to whom I can relate! There are a lot of people on the board who have tons of information who can help. There are lots of books out there now as well, whereas a few years ago, they were harder to find. My husband and I have been TTC for a while and we finally did achieve one pregnancy, but it ended in miscarriage.

    What I have found helpful was to really find a good Reproductive Endocrinologist who knows about PCOS. Mine is awesome and really really helpful and knowledgeable.

    Skyblue - I am on metformin, 2000 mg per day. Sounds high, but my doc says that's what he sees works in the studies he is involved in. I did notice that my lab work for certain areas (cholesterol, triglicerides and LDL) were rather high in past years, but this year, on this dosage of metformin, my numbers were much better! My doc has told me that met helps not only for helping to achieve regular cycles and reduce the risk of miscarriage, but also with the other risk areas associated with PCOS.

    Purple - How long have you been TTC, if you don't mind me asking? My hubby and I have been off of any contraceptives for about 5 years, but really got serious about a year ago.
    Married since 2005
    April 2010 - June 2011 - Metformin, 2000 mg/day and Femara 2.5 mg on days 5-9
    BFP!!! October 26, 2010
    Missed miscarriage Nov. 30, 2010
    Lost the pregnancy Dec. 18, 2010
    July 2011 - September 2011 - Metformin, 2000 mg/day and Femara 5 mg on days 5-9
    October 2011 - New RE. Reduce Met to 1500 mg, Femara 5 mg. IUI on day 17 with a Novarel trigger shot on day 15.

  3. #18
    Registered User purple310's Avatar
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    Hi Kyung75

    We've been TTC for >1year now without any success. I'm seeing an RE right now trying to do IVF but my last cycle was cancelled due to high estradiol levels :-( We had a baby naturally 2 years ago (right after an unsuccessful year of Clomid) and are trying for #2. I had tried metformin in the past but couldn't get past the GI issues and then developed hives. I'm thinking about trying a different preparation of metformin and, of course, diet and exercise to help with my response to the medications. You are lucky to have found a PCOS friendly RE. I asked mine if he knew of any that specialized in PCOS and he seemed to think that there was no such thing.

  4. #19
    Registered User mayleaf23's Avatar
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    Hi I'm new to the site. i found that i need to get to a much lower weight than most pcos-ers because of my small body frame. at 5'4" i exhibit severe pcos symptoms if i gain 4-5 lbs rapidly or if i hit 140. my cysts also get smaller or disappear altogether if i stay on the pill and get down to 130 lbs. does anyone have similar experiences? at 130, my pcos symptoms are much much better, but if i go off the pill, some acne returns and i still don't have regular periods. any advice or feedback? it would be much appreciated!

  5. #20
    Registered User kyung75's Avatar
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    purple - maybe you could look around to see if there is anyone doing pcos tests. are there any university hospitals near you that you have access to? i live near a university and it seems there are a lot of people who are pretty used to doing studies on pcos and are definitely up to date on the newest pcos news. i hope you find someone more helpful! oh, so sorry about the GI issues. i also had a lot of GI issues (and still do) but my body seems to finally have gotten used to the met. awesome that you did have baby naturally! i hope i may one day be able to naturally conceive, but for now, i am depending on the medicine plus lots of prayer.

    mayleaf23 - hello! welcome! lots of helpful ladies on here. by the way, i totally totally believe what you're saying about the need to keep a lwoer weight than most pcos-ers. i have had the same experiences as you. i am 5'6" and used to weigh 150+ and always felt not quite right, even though I was in the normal range of BMI. i read in a book something about asians having a more difficult time with their health if they just had a little extra weight and i finally did a search on "asian bmi" and found that there is a separate BMI chart for asians! i realized that this whole time maybe i was a little overweight!!! http://aadi.joslin.org/content/bmi-calculator if that link doesn't work, just google "asian bmi" and you'll find it. when my weight is lower, i definitely have fewer symptoms. exercise also makes a difference for me. after i got off the pill several years ago, my period didn't come around for a while. then i started running, and it came back! anyway, i hope that helps.
    Married since 2005
    April 2010 - June 2011 - Metformin, 2000 mg/day and Femara 2.5 mg on days 5-9
    BFP!!! October 26, 2010
    Missed miscarriage Nov. 30, 2010
    Lost the pregnancy Dec. 18, 2010
    July 2011 - September 2011 - Metformin, 2000 mg/day and Femara 5 mg on days 5-9
    October 2011 - New RE. Reduce Met to 1500 mg, Femara 5 mg. IUI on day 17 with a Novarel trigger shot on day 15.

  6. #21
    Registered User mayleaf23's Avatar
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    kyung75, thank you so much for the reply. it was incredibly helpful and encouraging! i was just wondering if there was a particular diet, i.e. low-carb, gluten-free, or just good old portion control, you used to lose the weight/made you feel best. thank you again!!

  7. #22
    Registered User kyung75's Avatar
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    hi mayleaf23 - you are welcome. i don't mind sharing whatever information i have. it's been a few years since i've known i have pcos, but it hasn't been a real issue until my hubs and i have been trying to have a baby. hmm... i started off at 150+ when I got married and honestly, my husband is much more healthy than me, so i sort of lost a few pounds just by virtue of not living with my family (who all love to eat). I've been fluctuating somewhere between 138 and 143 in the past couple of years. Two years ago, I decided to try to lose weight and keep my blood sugar in check via exercise and eating, and what really worked for me was just making yummy, delicious salads for lunch and eating those. They were filling, too. I have some ideas I can post if you need some, but just to give you an idea, I would make a taco salad with lean ground beef or turkey, spinach/romaine mix, a little cheese, black beans, jalapenos, a little fage greek yogurt to substitute for sour cream and salsa for dressing. YUM. I have heard other people doing the low-carb thing and I guess it works, too. I haven't been great with sticking with a strict diet, ever in my life. the other thing that helps is that I take metformin and it helps your body use your blood sugar more effectively and overall seems to help keep my weight in check too. Please let me know if you have any more questions!
    Married since 2005
    April 2010 - June 2011 - Metformin, 2000 mg/day and Femara 2.5 mg on days 5-9
    BFP!!! October 26, 2010
    Missed miscarriage Nov. 30, 2010
    Lost the pregnancy Dec. 18, 2010
    July 2011 - September 2011 - Metformin, 2000 mg/day and Femara 5 mg on days 5-9
    October 2011 - New RE. Reduce Met to 1500 mg, Femara 5 mg. IUI on day 17 with a Novarel trigger shot on day 15.

  8. #23
    Registered User skybluezoo's Avatar
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    Hi everyone!

    mayleaf23, I am also 5'4" and had slowly gained weight since I graduated college in 2002 (and weighed 125) until weighing between 140-150 lbs the past two years. I've tried losing weight but it's been really difficult. I did feel like my body changed when I gained more weight than 135 lbs. I've been on the pill since then until Jan 2010 so I never noticed the real length of my periods and whether it correlated with my weight. I started at around 150 at the beginning of this year and have been using portion control to bring myself to about 140. For some reason the next 5 lbs are the hardest for me as last year the same trend happened with me gaining the weight back during the winter holiday.

    I've been doing a lot of reading on the internet and there seems to be an anecdotal connection between PCOS and gluten sensitivity. There is a connection between celiac disease and infertility but the types of infertility seem wide ranging but can include PCOS. With regard to PCOS, some people, I think on this message forum as well, say that a gluten-free diet helps relieve some of the symptoms of PCOS. I believe that it is thought that gluten may exacerbate insulin resistance symptoms related to PCOS. I didn't test positively for insulin resistance but I think I am going to schedule an appointment to check my gluten sensitivity/celiac panel. Then I might just go gluten free for a while to see what happens. They say celiac disease can be silent in a person for their lives until a stressful thing happens in their life. It's been a stressful two years for me so maybe being gluten-free would help. I have stomach issues and bloating issues and well as being fatigued most of the time. But they say Asians don't really get celiacs but I think that may be because Asian people in Asia don't really eat wheat and celiacs are under diagnosed. Probably I don't have it but I feel like it's something that I should get checked out just in case since the fix seems easy to at least feel better physically.

    JA: I agree with kyung on substituting brown rice for white. My mom got me this fancy semi brown sticky rice which was awesome. But now it's even more trendy to eat super brown rice. They are selling it now mixed with brown sweet rice at the Korean grocery. The one my mom got comes in a green package (though I don't know the brand, sorry!). I think the trend is going with the one using the really fancy rice makers (like Cuckoo) that can really cook the brown rice well. The one I have can even cook beans with the brown rice and it actually tastes good.

    Kyung75: I have tried hanyak last year for 2 months. I think it helped my period cycle become shorter but I did not become pregnant. But I also just finished my dissertation at the same time so it could have also been a removal of stress. My mom wants me to take ginseng pills which sounds sort of hokey (and expensive) to me. She also wants to take me to this place called Bliss Acupuncture for a consultation I guess for acupuncture + medicine but they want my husband to get a fertility check up before they start just in case. I think we're going to make an appointment soon just to see what happens but I doubt that there is a problem on his side since I do have cysts and irregular periods.

    For losing 150-140 10lbs I cut out all sugary drinks including soda (which I didn't really drink anyways) and fruit juice (which I drank a lot of) and basically just drink water or milk. I don't eat any processed foods and make everything at home myself. For breakfast I'll eat either oatmeal, fruit smoothie (berries, banana, soy milk or milk, yogurt), or rice and veggies/soup (ex: miyagook). For lunch I usually just have some fruit or one of the things I mentioned that I eat for breakfast. For dinner I try to eat a small portion of what I make for my husband which includes foods from different ethnics types but mainly consists of mostly veggies or whole grain, sometimes meat or tofu, and I try to minimize the carbs that comes from flour. Usually this is like stirfry and rice or a salad but sometimes I make pizza with a salad or roasted chicken and veggies. Sometimes my husband gets sick of eating "healthy food" and he'll make something not healthy and I'll eat a small portion of that. Then for dessert I'll usually have fruit but sometimes I'll have fruity sorbet I made. During the day if I get hungry I'll eat some nuts or a tiny piece of dark chocolate. I try not to go out to eat because I usually end up eating too much or feel bad about what I ate because it wasn't that great and felt very caloric. We're also trying to save money as well so it's easier to be motivated to eat at home.

    It's very frustrating being this "good" and yet still not losing all the weight I want. I feel like I plateau around 140. Sometimes I'll get so frustrated that I'll just eat whatever I want then feel bad when I gain weight. Then I start all over again. I tried counting calories but it's very tedious to write down everything I eat, especially when a lot of Korean food you make yourself doesn't really have calorie information? Or maybe it's just hard when I get food from my mom. I think I will have to resort to exercise which I hate. I've tried so many times to regularly exercise but I find that after being gung-ho for a week, I lose interest until the next time I feel gung-ho a few weeks later.

    I guess it's also kind of hard to be motivated when the whole thing is a little depressing. My husband tries to be supportive but some days I feel very down about being sick. We're all at the age when our friends are having kids all over the place and I think those news days are the hardest days for me. There's just too many emotions like feeling happy for your friend but feeling jealous for yourself then feeling guilty about being jealous then feeling self-pity for the situation then feeling guilty since this situation isn't life threatening or anything then feeling selfishly but secretly sad about the situation. I haven't checked this message board since I posted but I'm kind of glad you all are out there even though I don't know you. I feel like I'm not alone as a freak Asian girl who shouldn't be having this problem and feeling more like this is something that happens to people randomly and I happen to be unlucky in this area like other people are.

  9. #24
    Registered User kyung75's Avatar
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    skybluezoo - i hear you on the whole losing the last 5 pounds. it's been like that my entire adult life. one of my super skinny korean girlfriends (who i love) once said to me that she didn't understand why it was so hard for me to lose weight! i was a little mad, but you have to know her to know she did not mean any harm. she just said it was always easy for her if she just cut out a few things and exercised. i could be eating salads every day, running 4 times a week and when i was at my lowest, i was just maintaining! you are not alone. there are lots of us i think who are korean with pcos. i have met at least a few others in my circle of friends. luckily, it is treatable, but i totally understand how you feel. i am glad all of you are out there, too. i also tried hanyak and it seemed to help make me feel warmer (my hands used to always be cold), but i also didn't get pregnant. i totally get you on all my friends having babies left and right. one girl told me that she "miscalculated" and ended up getting pregnant!!! it doesn't help that i got married a little later (on my 30th birthday), and some friends already had 1 or 2 kid by then. now it's even worse! :-)

    I just went through a cycle of femara/letrozole (kind of like clomid, but different) and thought for sure i was pregnant, but it didn't work, again. Somewhat disappointing, but hopefully it will work one of these days.
    Married since 2005
    April 2010 - June 2011 - Metformin, 2000 mg/day and Femara 2.5 mg on days 5-9
    BFP!!! October 26, 2010
    Missed miscarriage Nov. 30, 2010
    Lost the pregnancy Dec. 18, 2010
    July 2011 - September 2011 - Metformin, 2000 mg/day and Femara 5 mg on days 5-9
    October 2011 - New RE. Reduce Met to 1500 mg, Femara 5 mg. IUI on day 17 with a Novarel trigger shot on day 15.

  10. #25
    Registered User alu1971's Avatar
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    Hi guys! I was so relieved to see this message board. I was super super skinny (5'7", 100 lbs) up until 2006 or so. (I got married in 2004). I always had pcos, but didn't exhibit a lot of the noticeable symptoms until 2006. In 6 months I gained 40 pounds and haven't been able to lose it since. It's really hard because I'm not too much overweight for an American woman, but other Korean people (my in-laws included) look at me like I'm a monster or something. We've been ttc on and off for about 4 years.. my in-laws and hubby were against using fertility meds or anything. Finally, we went to see an excellent RE who specializes in PCOS, and I'm on my first cycle of clomid... waiting for (hopefully) some follies to grow so I can do an IUI.

    One note... When I had gained about 25 pounds, I tried hanyak... while I've seen it work for other people, I have to warn you!! Be careful!!!! My mom dragged me to some guy who is supposedly very good. The yak he gave me made me gain 15 more pounds.

  11. #26
    Registered User kyung75's Avatar
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    Hi my Korean-cysters! Just checking in to see if anyone had any updates? Not me. We just did our 4th cycle of Femara since I had a miscarriage in December and just got my period. On to the 5th cycle. I hope this is it!
    Married since 2005
    April 2010 - June 2011 - Metformin, 2000 mg/day and Femara 2.5 mg on days 5-9
    BFP!!! October 26, 2010
    Missed miscarriage Nov. 30, 2010
    Lost the pregnancy Dec. 18, 2010
    July 2011 - September 2011 - Metformin, 2000 mg/day and Femara 5 mg on days 5-9
    October 2011 - New RE. Reduce Met to 1500 mg, Femara 5 mg. IUI on day 17 with a Novarel trigger shot on day 15.

  12. #27
    Registered User blueorchid's Avatar
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    Hi,
    I am a new cyster, Korean-American. Although I can't relate to you on the issue of pregnancy (I am only 20 and still in college), I can totally relate on the issue of losing weight. I am 4'10" and weigh 130lb, I look pretty average by US standards, but put me next to my sister who is 4'11" and 95 lb, and you get what I mean. i am starting to look into a more intensive diet, and have started by substituting white rice for brown, but sometimes it is just hard.

    I was wondering if anyone has started to experience thinning hair yet? I am not noticeably thinning to other people, but I am starting to see it creep up on me slowly, and was wondering how other people are dealign with it, if they even have the issue

  13. #28
    Registered User kyung75's Avatar
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    hi blueorchid! i have experienced thinning hair also starting in college. i used to worry that one day i'd be bald, but mine sort of slowed down and my hair is about the same thickness it was in college. (i'm now in my mid-thirties!) anyway, i don't know a lot about treatments, but hopefully my experience will be somewhat encouraging.

    even though you aren't looking at getting pregnant, i'd encourage you to find an endocrinologist who knows a lot about pcos. it is very helpful to help you deal with other health issues caused by pcos besides just trying to get pregnant. :-)
    Married since 2005
    April 2010 - June 2011 - Metformin, 2000 mg/day and Femara 2.5 mg on days 5-9
    BFP!!! October 26, 2010
    Missed miscarriage Nov. 30, 2010
    Lost the pregnancy Dec. 18, 2010
    July 2011 - September 2011 - Metformin, 2000 mg/day and Femara 5 mg on days 5-9
    October 2011 - New RE. Reduce Met to 1500 mg, Femara 5 mg. IUI on day 17 with a Novarel trigger shot on day 15.

  14. #29
    Registered User dreamr724's Avatar
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    Hi! I am a Korean American cyster and super excited to have found this topic!! When I saw that others had gone the Hanyak route I immediately knew that I could ask my questions here comfortably.

    Here's some background:

    I've always had irregular periods since I was 14 (approx. two periods a year) until my mom took me to a gyno -- which she was so embarrassed about. Where I was put on the BCP. I was frequently taken off and on because my mom thought i was going to get cancer from the BCP. Before college I was placed on ortho evra patch because I was forgetting the pill too often. That was then taken off the market and I started using the Nuvaring in 2006.

    That's when I started to have mysterious allergy to apples then slowly more and more things I was allergic to. I didn't put this one together until recently.

    I've stopped taking all BCP approx a year ago and here is where all the pcos symptoms started to come out. During this time i tried Samra hanyak for two months and it shortened my periods but not sure if it changed my ovulation. My PCOS symptoms include Terrible acne, weight gain, hair loss, slight facial hair gain, allergies, and irregular periods (60+ days). I went back on Nuvaring briefly in the last month because I was afraid my hair would all fall out. But with the diagnosis my gyno said if you are TTC get off the BCP.

    DH and I are 29 and TTC and at the beginning of our journey. Right now I'm just trying to diet to lose weight and see if that will change my ovulation. I'm 5'2 and 143lbs very far from the "normal" 100lb Korean woman. I've always been trying to lose weight but now that my health is on the line I'm hoping to really buckle down. Even cut down on my beloved rice... I have an appointment with a gyno in jan and hope to find a RE to start metformin to see results.

    I feel relieved to know that my rapid weight gain has another cause rather than my relatives saying you eat too much and exercise more. It was always confusing to have American friends say you look average and yet koreans think you're huge.

    The odd thing is PCOS seems to be genetic but no one on either side has any symptoms or even irregular periods. Anyone else an anomaly in their families? Everyone on both sides of my 13 aunts and uncles are fine.

    Thanks to listening!

  15. #30
    Registered User kyung75's Avatar
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    Hi Dreamr724! I have been meaning to respond to you for a while, but it was so busy with the holidays and now I'm back at work!

    I don't actually know if it runs in my family or not, but being that my grandmother had 7 kids,and my other grandmother had 3 with no problems, it doesn't seem to run in my family. My sister and I both definitely have PCOS, but we don't see any outward symptoms in any family members. I hope the metformin helps. What is Samra hanyak? Hanyak seemed to help me some, but I still haven't gotten pregnant yet. Met has helped me to keep off weight, although I hope you don't have the side effects as much as I did. It's much better now, because I stepped back from 2000 mg/day to 1500 mg/day.

    Keep us posted!
    Married since 2005
    April 2010 - June 2011 - Metformin, 2000 mg/day and Femara 2.5 mg on days 5-9
    BFP!!! October 26, 2010
    Missed miscarriage Nov. 30, 2010
    Lost the pregnancy Dec. 18, 2010
    July 2011 - September 2011 - Metformin, 2000 mg/day and Femara 5 mg on days 5-9
    October 2011 - New RE. Reduce Met to 1500 mg, Femara 5 mg. IUI on day 17 with a Novarel trigger shot on day 15.

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