NWR: polycystic ovarian syndrome

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Posted by Laura0612

i have it...in fact looking back on my medical history i had it from day one when i first got my period at 11 1/2...i'm textbook pcos, hair growth, late, painful and heavy periods, insane out of control weight gain, i used to have moderate acne but not anymore, and the insulin resistance. i do not have any cysyts though, and my gyno says my ovaries and uterus look great...however i've gotten tons of conflicting information since i was diagnosed at 24, about 4 years ago. i was diagnosed by my gyno who sent me to an endocrinologist, and i ended up on yaz and metformin (glucophage), which together regulated my period to the point that is was clockwork and i barely noticed it, i had zero acne, hair growth slowed, and best of all, i dropped 40 without hardly trying. then i lost my health insurance and had to stop both drugs, and over a year all the symtoms slowly creeped back. i just started the metformin again in april and have a 12 pound weight loss but unfortunately, that seems to be the only reversal, and i won't go back on yaz since there's a class action law suit against them. i know so many people who have pcos, and they all have children, although not without difficulty. my cousin had to take clomid before she could get pregnant, and a friend had several miscarriages before her baby...its different for everyone. i can give you the name of a wonderful endocrinologist on LI if youre interested. fm if you have any questions, i've researched pcos thoroughly!

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Very helpful! If you can please FM me your endocrinologists info. My first stop is the gyno Tuesday so I guess my next stop after there is going to be an endocrinologist.

Doctor;s like to chalk up missed periods to having PCOS, when in fact that's not exactly true. The 'real' way to know is by having a blood test and checking your testosterone levels and having a transvag sonogram to actually pinpoint and measure the cysts.

And yes - Metformin - diabetic medication is what helps the most in terms of pregnancy, bc metformin causes you to ovulate. The amount of extra testosterone in your body is what prevents ovulation.

HTH

I was told I have this also, was diagnosed at 18. However looking back, I truly believe that the diagnosis was incorrect since I was told I would have trouble getting pregnant later in life.
10 years later I have a 17 month old sleeping in his crib right now that was conceived while on birth control. I really think that doctor was wayyyy off!!!
In all seriousness, lots of people have PCOS and are controlled with medication, for some diet is enough. I think I just had irregular periods because I was so young, overweight and my cycle was not regulated yet and the doc's immediately label it PCOS. I think half the time it's not even true. I have lots of firsthand info, FM me if you want to!! I also have great docs...

I was an 09 bride and I have it as well. I've been able to control it with orthotricyclen and spironolactone and then I switched to the ortho and flutamide. They are MIRACLE drugs. I had HORRIBLE skin and NOTHING worked. I was 30lbs overweight and had a horrible hair problem on my chin. When I started the spironolactone, my skin cleared up within a few weeks. I was also able to diet and exercise and lose the 30lbs. The hair went completely away at first but then came back a little so that now I have to shave in the morning but it's not so noticeable and I don't get as many ingrown hairs that were a nightmare. I switched to the flutamide because my reproductive endocrinologist said it works better (I don't know if that's true for me but it works just as well as the spiro).

There's also something called Vitex (it's an herbal supplement) that can help you regulate your cycles and buckwheat farinetta is a kind of flour that you can use to make muffins and that's supposed to help as well.
http://www.food.com/recipe/buckwheat-farinetta-muffins-431265
http://www.acne.org/messageboard/Women-PCOS-symptoms-or-t211344.html&hl=leaky+gut
http://community.babycenter.com/post/a5894585/d-chiro-inositol_helped_me_conceive_wanted_to_share...
http://www.minndak.com/Buckwheat.htm

I see Dr. Michael Lydic in Stony Brook and he literally changed my life. When I was at the hospital visiting a new baby, I saw a flyer for his study on the effects of chromium picolonate on insulin resistance and I qualified for his study and he became my doctor. Having a reproductive endocrinologist who KNOWS what he's doing and is well versed on the subject is VERY important.

FM me if you want!

ETA: I had my first baby 15 months ago without any drug interventions at all. I got pregnant in my 3rd month. The only issue was that my progesterone was low and I had to take supplements until I was around 13 weeks.

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Posted by jomacah

I have it and have been struggling for a very long time now. I am an older bride, I am 45, so I had to stop the birth control pills 2 years ago. I am on the metformin still. Blood sugar is still out of control. I tried everything, the spiro, vaniqa and nothing helped my hair growth. I'm actually a little nervous because we are getting married outdoors and it is gonna be a long day and I'm worried about people seeing my hair growth in the sunlight. Has anyone else worried about this. I know this is a touchy subject. I can't believe how many of us have this and we are not alone. I also get the low back pain from time to time and I get sonograms every year for cysts.

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I used to be on metformin also - it worked for a year or so, and then it stopped I think that was the one I was on for 2000 mg a day.

For the hair growth, could you maybe use the hair removal cream a day or two before the wedding? This should help remove it overall and so that nobody notices the hair...usually takes a few days to grow back in.

Agreed - can't believe how many people have it also, and a lot that don't even know they do.

For those of you that haven't been to the message board for PCOS yet - you really should - great info on there and it helped me get through the first few months after I was diagnosed with it:

Soul Cysters

I think that I have this, but I don't have insurance so I just go to planned parenthood and get my birth control pills from there to try to help with the symptoms. When I'm not on the pill my period is regular, but incredibly painful. If I don't watch what I eat, the weight comes on and the hair growth is an extremely embarrassing issue. It's so frustrating being my age without insurance for so long, but being a student I couldn't afford it. The first thing I'm doing the day I get insurance is getting a blood test to see if I have it

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Posted by MrsList

I was an 09 bride and I have it as well. I've been able to control it with orthotricyclen and spironolactone and then I switched to the ortho and flutamide. They are MIRACLE drugs. I had HORRIBLE skin and NOTHING worked. I was 30lbs overweight and had a horrible hair problem on my chin. When I started the spironolactone, my skin cleared up within a few weeks. I was also able to diet and exercise and lose the 30lbs. The hair went completely away at first but then came back a little so that now I have to shave in the morning but it's not so noticeable and I don't get as many ingrown hairs that were a nightmare. I switched to the flutamide because my reproductive endocrinologist said it works better (I don't know if that's true for me but it works just as well as the spiro).

There's also something called Vitex (it's an herbal supplement) that can help you regulate your cycles and buckwheat farinetta is a kind of flour that you can use to make muffins and that's supposed to help as well.
http://www.food.com/recipe/buckwheat-farinetta-muffins-431265
http://www.acne.org/messageboard/Women-PCOS-symptoms-or-t211344.html&hl=leaky+gut
http://community.babycenter.com/post/a5894585/d-chiro-inositol_helped_me_conceive_wanted_to_share...
http://www.minndak.com/Buckwheat.htm

I see Dr. Michael Lydic in Stony Brook and he literally changed my life. When I was at the hospital visiting a new baby, I saw a flyer for his study on the effects of chromium picolonate on insulin resistance and I qualified for his study and he became my doctor. Having a reproductive endocrinologist who KNOWS what he's doing and is well versed on the subject is VERY important.

FM me if you want!

ETA: I had my first baby 15 months ago without any drug interventions at all. I got pregnant in my 3rd month. The only issue was that my progesterone was low and I had to take supplements until I was around 13 weeks.

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I am glad to see you were able to keep it at bay and have a baby! Congrats! I haven't been diagnosed with it yet, but my MRI results noted bilateral cysts so I will know for Tuesday when I go to the Gyno.

I was taking spironalctine which was prescribed by my dermatologist for hormonal breakouts which did help with the hair growth. She also does hair laser which doesn't work for me. Also my ortho tri cyclen lo keeps me regulated.

Once I leave the gyno my next step is to contact the endocrinologist. Hopefully they will prescribe something that keeps hair growth at bay and helps me drop weight more easily. Last year I was training for a half marathon and lifting weights and eating a weight lifter diet. My body definitely changed and I dropped some weight, but for the work I was doing I should have had the body to be on the cover a fitness magazine, but I think PCOS has something to do with the resistance to changes in the body.

Next week I think a lot of questions will be answered. I will keep everyone posted and I appreciate everyones support and real life stories. Makes me feel like I am not alone.

Love ya girls

2 questions .. anyone have issues with the hair on their head falling out??

and 2 .. people on metformin .. did it irratate your stomache? ever time i try it within a week or so my tummy is all outta wacks .. anything to prevent this?

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Posted by MrsList

I was an 09 bride and I have it as well. I've been able to control it with orthotricyclen and spironolactone and then I switched to the ortho and flutamide. They are MIRACLE drugs. I had HORRIBLE skin and NOTHING worked. I was 30lbs overweight and had a horrible hair problem on my chin. When I started the spironolactone, my skin cleared up within a few weeks. I was also able to diet and exercise and lose the 30lbs. The hair went completely away at first but then came back a little so that now I have to shave in the morning but it's not so noticeable and I don't get as many ingrown hairs that were a nightmare. I switched to the flutamide because my reproductive endocrinologist said it works better (I don't know if that's true for me but it works just as well as the spiro).

There's also something called Vitex (it's an herbal supplement) that can help you regulate your cycles and buckwheat farinetta is a kind of flour that you can use to make muffins and that's supposed to help as well.
http://www.food.com/recipe/buckwheat-farinetta-muffins-431265
http://www.acne.org/messageboard/Women-PCOS-symptoms-or-t211344.html&hl=leaky+gut
http://community.babycenter.com/post/a5894585/d-chiro-inositol_helped_me_conceive_wanted_to_share...
http://www.minndak.com/Buckwheat.htm

I see Dr. Michael Lydic in Stony Brook and he literally changed my life. When I was at the hospital visiting a new baby, I saw a flyer for his study on the effects of chromium picolonate on insulin resistance and I qualified for his study and he became my doctor. Having a reproductive endocrinologist who KNOWS what he's doing and is well versed on the subject is VERY important.

FM me if you want!

ETA: I had my first baby 15 months ago without any drug interventions at all. I got pregnant in my 3rd month. The only issue was that my progesterone was low and I had to take supplements until I was around 13 weeks.

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I also go to Dr. Lydic in Stony Brook. I LOVE him!

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Posted by jomacah

I haven't had any trouble with the hair on my head falling out, but let me tell you that the metformin kills my stomach !!

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I went on Metformin for few months last year and it really messed up my stomach too. I'm still not the same as before I started taking it. It also made me get sick during the night. I really hope that I don't need to take this drug again in the future. Did you wean yourself onto it?

I have it too. I had to go to an RE because I went a year without getting a period at all. He put me on Provera to bring it on and informed me even when I take Provera, that even though I get a period from the meds, that Im still not producing eggs (anovulatory) ... unfortunately. However, I am on Metformin and there are meds that my RE told me we can start when we start TTC. The metformin does not affect my stomach at all.

Good to see all the support on this thread

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I went on Metformin for few months last year and it really messed up my stomach too. I'm still not the same as before I started taking it. It also made me get sick during the night. I really hope that I don't need to take this drug again in the future. Did you wean yourself onto it?

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I get sick from it too and constantly have to run to the bathroom ! (sorry TMI) !! I'm suppose to be taking 4 500 mg. tablets a day, but right now I am only up to taking 2. FH is on my case about it and so is the doctor.

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Posted by FutureMrsH21

I think that I have this, but I don't have insurance so I just go to planned parenthood and get my birth control pills from there to try to help with the symptoms. When I'm not on the pill my period is regular, but incredibly painful. If I don't watch what I eat, the weight comes on and the hair growth is an extremely embarrassing issue. It's so frustrating being my age without insurance for so long, but being a student I couldn't afford it. The first thing I'm doing the day I get insurance is getting a blood test to see if I have it

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There are some more natural methods that also may help. There's a board called SoulCysters that is for women with polycystic ovary syndrome. Many of those women know all about alternative methods and there are also articles with info.

http://www.soulcysters.com/symptoms.html