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I don't have it, so can't be of much help, but just wanted to say that I hope now that you know what it is, you can start managing it and things look up for you. Nothing productive to add, this is more of a support post. Good luck and I'm sorry you have to go through this!
i don't have pcos but i do have insulin resistance and am on metformin for it. my suggestions - research low-carb diets (seriously the BEST way to eat when you have pcos)...lowcarbfriends.com is a great site! also - for fertility - even if NOT ttc yet - seriously get the book "Taking Charge of your fertility". it'll teach you things they'd NEVER teach in school! and it's not just for people ttc - but it teaches you about your body and learning to listen/pay attention to your body in general. :)
I've had pcos since I was 12 (12 years ago). Right now I'm taking metformin, spironolactone (sp?) and lyvoxal (sp?) I hate to say this because I have a feeling an argument could pop up, but, don't take BC for PCOS because its pretty much putting a band aid on the problem. Also, you may have to change the way you eat, lots of low carb stuff and be sure to exercise regularly if you don't already.
I've been dealing with it for such a long time and when I was 12/13 I was a "test monkey" for the combination of medications I'm on now. If you have questions or anything PM me. :)
PCOS really isn't all that bad if you treat it correctly.
PCOS is a pretty wide diagnosis, which means 1) yeah you can definitely have it without having some of the symptoms and 2) sometimes they tell you that when they don't know what else is wrong.
I didn't get my period for a year after going off the pill. In fact, I think I only got it once or twice in the couple of years before I went back on the pill. I was told it was due to PCOS based on a blood test and the fact that I occasionally get hairs on my chin (isolated, easy to pluck ones). Yet I am lucky enough to have no trouble maintaing a healthy weight on a relatively high-carb diet (my body actually feels and runs WAY better on carbs than protein which if being carb-sensitive is a marker means I may have been misdiagnosed... I don't really know and never explored it).
Basically, all they told me to do was go back on the pill and tweeze. Which, um, thanks... basically in my case it was a pretty useless diagnosis.
What is it you're trying to manage? Basically all the advice I've seen for managing PCOS has been dealing with the insulin resistance/abdominal fat, with irregular periods, or with trying to conceive. I think that's really where you want to hone in your follow up questions to the doctor - what is there you're trying to manage and how can you best go about it.
Lilyfaith, thanks for the support :) I definitely agree that it's at least nice to know what's going on now.
JuneBride- Thanks for the book suggestion. I've seen a lot of people talk about it but I've always held off because I'd feel weird buying a book about fertility if we aren't TTC. I think with this new information, I might go ahead with it finally though. I will definitely talk over a low carb low sugar diet with my doctor. It will be soooo hard for me because I have the biggest sweet tooth and I'm a carb addict (spaghetti is my favorite and we have it like once a week lol) But, obviously if it's an issue I would address it.
ILuvDance- I definitely don't plan on going BC if I can help it! I will talk to the doctor, but when I was there during my checkup and when they took the blood test I already told her I wasn't really interested in BC and she was just fine with that and told me it the only thing it would "treat" is my irregularity anyway and that it was more like a step backward than a step forward. I'm a healthy weight (127lbs and 5'6) but I'm probably not as active as I should be, so some exercise shouldn't hurt. I'd like to male a goal of playing Just Dance on Wii for 30mins every day, but it's hard to find the time!
Entangled- I'm not really sure what needs to be managed, which is why I used the quotes. I don't know if there is a "cure" or what. I guess personally, a couple problems I have are acne and really thin hair on my head that I would love to "fix." I've also got some body hair that I'd rather do without, but it's nothing super major. I don't grow a beard or moustache yet! In some ways having a period only once every two months has its upside, but obviosly that will make it take longer while TTC (which will hopefully be the end of next year) but since that isn't a super immediate concern, I don't know if it needs to be addressed yet. I will definitely talk to the doctor about it though!
thanks so far everyone!
I have pcos too. I was diagnosed a few years ago. Check out http://www.soulcysters.com/ it has a lot of great information and you can read other peoples stories and questions. My doctor recommended it to me.
Because you are not ovulating every month your lining will build up. You mentioned that you would like NOT to go back on birth control pill so you can always have everything scraped out (depends on insurance too), if not then you can spot for days/weeks/months at a time until it's all shed. This is def. something that you want to talk to your doctor too. When I was first diagnosed with it my doctor gave me an option of doing this (she said it was kind of painful but you get it over and done with) or take some pills that will cause everything to shed on it's own. I chose the pills but eventually regretted it and wished I had done the scraping.
But don't be afraid to ask your doctor anything! PCOS is more common than people think.
Thanks for the heads up! My doctor mentioned the lining build up. She told me that as long as I was getting a period at least every 90 days that it should be fine, but if it takes longer then it would be a problem they have to address. Of course this was before the PCOS diagnosis, so I don't know if that changes anything, but it's definitely something to ask about again!
I'm on BC for now for mine. I wasn't getting my period at all for almost a year, and my doctor was concerned about uterine lining building up. The way it was explained to me is that we need to have it every once in a while or the lining can become "disorganized" which can be a uterine cancer precursor. If you're having your period it may not be an issue there.
I'm a bit overweight (sudden weight gain was one of the first things that tipped me off, you know... besides the moustache) but haven't gained anything since being diagnosed. I just know that I have to eat better and work out more than other people just to maintain.
absolutely check out www.lowcarbriends.com - you'll find TONS of support - and also learn that you CAN eat sweets on a low-carb diet! just learn to bake with erythritol or xylitol (sugar substitutes) and also - pasta IS possible. i LOVE "dreamfields" pasta.
I also use almond flour for EVERYTHING from breads to pancakes!
dreamfields is a really good option - but warning - once you are on a low-carb diet, you probably should eat it sparingly as it affects everyone differently (as far as blood sugar apikes) and it's nice to HAVE that option out there!
http://www26.netrition.com/dreamfields_pasta_page.html
http://www26.netrition.com/bobs_red_mill_almond_flour_page.html
and here's a GREAT site to show you just how much sweet stuff IS possible on a low-carb diet!
http://healthyindulgences.blogspot.com/
http://blog.yourlighterside.com/
Do those sugar substitutes have a weird taste to them? I wouldn't mind it as much if I could tolerate "fake" sugar, but I feel so sensitive to the "Spelnda" flavor that I always check the labels before I buy something labeled as low-sugar or something because most of the time I notice it and just can't stand it. As much as I love love love sweets, I'd rather go no sweets rather than sweets with "fake" sugar because it's just that bad tasting to me.
And on one of the links you posted, they mentioned spaghetti squash. We actually tried that this weekend! We weren't such a fan lol But I guess when spaghetti is your favorite, it's hard to substitute :p
I'm hoping my issue isn't related to insulin, but I know that's probably me being a bit naive and optimisitic lol I'll have to see what the results for the blood test showed exactly, so until then, I'm going to try to enjoy sweets and carbs while I still can lol Spaghetti is on the menu for dinner tonight :p
@JoesWifey: some do - some don't...you really just have to try for yourself to see which ones you like/can tolerate. there's also stevia as well (my fave) but a VERY little goes a LONG way (like i'm talking 1/8 of a tsp!)
I have PCOS too among other things. A low carb diet and P90X (or substitute your own exercise program) helped me lose 20 pounds and bring my ovulation date from who knows when (never regular) to cycle day 16. So I think ultimately diet and exercise is the winning formula, though I realize everyone's labs and symptoms are different. I don't have a lot of facial hair but I am blonde and have very fine hair anyway, so I don't know if that is why. I also never had acne or anything like some PCOS'ers. I have rosacea and seborrheic dermatitis, so I have very dry skin. I have a lot of other autoimmune issues including Hashimoto's thyroiditis, and I have had multiple miscarriages to find all this out. PCOS'ers seem to have lots of autoimmune issues and there is some debate over whether this is coincidence or related somehow. I second the soulcysters website. Lots of great info over there. Now I obviously ovulate, so I have that going for me. I can get pregnant, but can't seem to stay that way. My sister has PCOS and she never ovulates. She is always on the pill or taking Provera to start her period. SHe had to do multiple IUI's to get pregnant. Fortunately, that worked for her and she has a 3 year old son and just had twins 3 weeks ago. So there is hope for the infertility aspect of it. She suffered from the acne and excess hair with hers. My younger sister also has it, but she is very thin. She has acne, facial hair, endometriosis and had a pituitary tumor and many other issues. I don't know why/how all of us have this and have been so affected by it. It is something that I research a lot, but there aren't really any real, definitive answers but lots of theories. It sucks, but I think it can be controlled. Finding the right doctor seems to make a world of difference. So many regular OB/GYN's don't know much about it or how to treat it which is a shame since this has become more and more prevalent. Do your research, watch your diet and definitely exercise, and find yourself an RE that understands your dx and will explain all your labs to you and what they mean. Good luck! Sorry this was so long!
@JoesWifey: I also don't have PCOS, but wanted to lend my support. At least now when you're going to start TTC, you know the drill and you are going to be prepared for everything. Definitely ask your doctors as many questions as you can, and when you're going to start TTC, keep an open mind!
Sorry I can't be much more help than that. Just wanted to let you know there are bees here to talk to :o)
@JoesWifey: I am a Splenda junkie! I know you are sensitive to it and it was definitely an acquired taste for me. I tried Stevia packets, and I can't take it. I tried Agave nectar and can take that in some things. I avoid aspartame like the plague and while Splenda has had some negative press regarding the chemical process I find that it is the only thing I like that doesn't affect my blood sugar at all. The Splenda Diet Cokes are my best friend! Buy all pasta, bread, and cereal in whole grain only and learn to love it and limit it and you will be fine! Avoiding sugar is unfortunately a necessary evil so limit sweets for sure. I do eat some in moderation now that I have lost weight and it doesn't seem to affect me too much but once I get on low carb, if I eat bad carbs, the cravings are very overwhelming. So I find it best not to even cheat anymore.
I think another thing you might want to do is find out what your blood sugar levels look like - it seems like there are a LOT of people with PCOS who have done really well on a low-carb diet, but it sounds like you don't have any of the metabolic issues that often come with PCOS. It's not really a gyn issue, but finding out if your body is insulin sensitive could be helpful to know. I don't think going low carb is necessarily going to help you if that's not the case. [I am probably over-sensitive about this b/c I got put on a low carb diet that made me sick and grouchy for months while repeated glucose tests kept coming back super normal.]
I do remember being told that if the BC didn't work to minimize hair there was some sort of pill that I could take that would help with testosterone reuptake. But I never went on it, because I got really fed up with the doctors I was seeing at the time.
I have PCOS as well and am not your typical candidate: not overweight, no excess hair, etc. I was diagnosed 11 years ago after a routine blood test after spotting on and off for months at a time.
I am the same as you - not TTC. I do not use birth control pills (but am proud they are available and wish birth control a happy 50th birthday!) and have lost 30 lbs and am back in a normal/healthy BMI range.
An endocrinologist advised me that there is no need for treatment unless something changes -- excess weight gain, TTC without success, etc. I have no idea when/if I ovulate as it is, but I do track my periods if and when I get them. I have a golfball sized cyst on my right ovary which ruptured in July, so now I have to have regular ultrasounds. I asked at an appointment two weeks ago what I can do for treatment now and he said I could go on birth control, but my body didn't respond well previously, so I'm not going on.
The bottom line, I suppose, is that you can get through it. Maintaining a healthy lifestyle is a big part of battling the problem, and I think you're well on your way. I feel for ya, girl!
Based on some symptoms I've had most of my life, I'm beginning to suspect I might have PCOS. I sure hope not, but it would definately make sense in many ways. Suppose I've got to have a conversation with my GYN next time I go in. I've never ever had anything resembling a normal period, and they're about as predictable as tornados (I might have a few uncomfortable hours of possible warning--or not). I've always had blood sugar problems, even though I'm not diabetic, which in turn is giving me weight problems. I don't really have much in the way of unwanted facial hair, luckily. But I'm starting to think that it certainly won't hurt to ask the GYN a few more specific questions next time. I love being on Depo, where I haven't had a period in years, but it certainly can't hurt to know more about PCOS, especially if there's a chance I might even have it.
I just found out today that I have PCOS and I found this post very helpful! THank you all ladies!
I've had it since I was a teenager. My advice (and that of a specialist...):
You get into this horrible cycle of can't lose weight cos of the hormones, but can't control the hormones because of my weight. And the only way out of it is a mega-hard slog of workouts and eating very, very healthy. There's also the enhanced risk of cancers and diabetes which you need to be aware of.
You can beat this. I live a normal life, I'm a normal weight. But it comes at a huge cost of not eating bread (and other carbs). God I'd kill for a sandwich ;)
I recommend getting a book called the PCOS diet book (http://www.amazon.com/PCOS-Diet-Book-Nutritional-Polycystic/dp/0007131844/ref=sr_1_1?ie=UTF8&qid=1293593625&sr=8-1). There's also another book out there about living with PCOS which I found very useful (had the same designs as the diet book but is orange). Also investigate low GI cookbooks etc. There are also great support forums online.
They say abut 20% of the population has it, even more probably. My specialist says it's not a disease or a syndrome to him if more than 1 in 5 women have it. So you just have to be careful, but it shouldn't stop you living.
Oh and when TTC in NZ they recommend metformin which is the diabetes medication. This could be something to investigate if you have trouble TTC.
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So, I went to the doctor a little over a week ago because I've been having irregular cycles since going off BC last October, so I knew something was up. I suspected maybe PCOS (because of other things in conjunction with the irregular cycle) so I asked the doctor and she said "well, you don't fit the typical profile of PCOS (not overweight), but we'll do a sonogram just to see, but I don't suspect we'll find anything." Well, turns out they did see a little something but she still wasn't completely convinced and wanted to be 100% sure so we did blood work. I just got the call today that it came back positive for PCOS :( I didn't talk to her about any of the details yet because I have to go back Nov 5th anyway for my 2nd HPV shot, so I figure it would be best to do it then.
I know there's a few other ladies out there with PCOS. Is there anything you've had to do to "manage" it? Especially if you aren't over weight? We aren't TTC yet, so I'm not super concerned about that yet. Plus, when they did the sonogram she saw the follicle forming so it appeared that I am ovulating at least. Instead of every month though, it's about every other month for me.
Anything I should ask the doctor about in particular? Luckily the doctors are so so nice. They really listen to me and take their time. They seem to be very respectful of my wishes and don't just tell me I have to do what they say and instead let me make my own choices. I haven't had a gyno like that before! If anyone is in NYC (Brooklyn, specifically) and needs a gyno reccomendation, PM me.
Thanks for any support/help/advice you can give me. I really appreciate it!