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 Post subject: Re: PCOS!
PostPosted: Mon Oct 25, 2010 8:01 am 
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My doc diagnosed me several months ago. I have to do a round of hormones if I don't get a period every three months. She hasn't given me any "direction" on treating/dealing with it otherwise, so all my info on PCOS has come from the internet. Luckily I've been eating much better lately, so have managed to lose a few pounds and my skin has cleared up considerably.

Does anyone have anything that's worked for hair loss? I just found the connection this morning on PCOS and hair loss. It's been falling out like crazy and making me nervous.

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 Post subject: Re: PCOS!
PostPosted: Mon Oct 25, 2010 5:22 pm 
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Steph wrote:

Does anyone have anything that's worked for hair loss? I just found the connection this morning on PCOS and hair loss. It's been falling out like crazy and making me nervous.

No. Major sadface. I'd like to know if it has gotten better for anyone as well. The good news is...I still have tons of hair. But yeah, it falls out a lot and it sucks.

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 Post subject: Re: PCOS!
PostPosted: Mon Oct 25, 2010 8:23 pm 
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Steph wrote:

Does anyone have anything that's worked for hair loss? I just found the connection this morning on PCOS and hair loss. It's been falling out like crazy and making me nervous.


Aww :( I'm sorry you're dealing with that. Mine has thinned quite a bit- I'm lucky that it was mega-thick to start with, or it would be noticeably thin now. The hair loss has slowed in the past few years, and I'm not sure why. I'm just thankful, but also nervous.

I take biotin daily, and make sure I'm eating flax for omega 3s. I don't know if it helps, but I figure it's best to try to keep my hair as healthy as possible.

I've read that if you have an oily scalp it's best to shampoo often, as the oil can contribute to hair loss by plugging the follicles. Minimizing your hair product use (which can also plug follicles), blow-drying, and other heat-styling is recommended, too.

I also use the Lush "New!" cinnamon shampoo bar. It's supposed to "stimulate your follicles and encourage healthy hair growth". I don't know if it does that or not, but it's vegan and it smells good, so I'd buy it anyway. Here it is: http://www.lushusa.com/shop/products/ha ... ampoos/new


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 Post subject: Re: PCOS!
PostPosted: Mon Oct 25, 2010 8:27 pm 
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I do flaxseed as well. A friend of mine had really horrible hairloss and she thinks the flaxseed helped. And it can't hurt, right?

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 Post subject: Re: PCOS!
PostPosted: Mon Oct 25, 2010 8:47 pm 
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Tofulish wrote:
I imagine it is because soy has phytoestrogens in it, but given that the issue with PCOS is that you have higher androgen levels (so you get increase hairiness on your body, and hairloss on your head, and weight distribution around your middle like men do). I'm not sure why those phytoestrogens would be a bad thing.

ETA: apparently excess estrogen converts to testosterone. I haven't been able to find a satisfactory source for this yet though - just lots of posts on message boards, referencing Weston A. Price Foundation or Dr. Mercola. The FDA seems to come down on the side of soy being fine. http://www.pcosnetwork.com/articles/die ... r-harmful/

Maybe idji or Chipmunk can explain this.



From what I've learned, soy is "bad" more for Endo than PCOS. You're dead on with the phytoestrogens though. That's everyone's primary reason listing it as an avoid food.
However, just from my own point of view, I noticed zero difference in the years before I ate soy (as I noticed) and when I went Vegetarian, to when I when vegan at first (and way increased my soy) to the two years I avoided it best I could. None of my symptoms ever changed by avoiding soy, but getting rid of dairy was my savior!

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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 8:06 am 
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I know I had an average post count, but I didn't really think anyone knew who I was on here, thanks for the love Tofulish!

I read this website: http://www.ovulation-calculator.com/pre ... htm?page=1

And I am going to get some Chaste Tea Berry and Dong Quai today at an herbal store up the street. Hopefully they help, I know from one test that my progesterone is quite low. It's frustrating for both my husband and I, harder that no one knows we have been trying, some how it's hard for others to understand.

I will get a GP this month and hopefully an apt. and tests in January, seeing if the herbs allow me to become pregnant on my own first. However, I do not know their half life and I do not want to mess up any tests that might be done in January. I do get my period regularly now, 25-28 days, but it in general is not a normal period, clumpy and whatnot. I do not want medication but I am seeing that it might be the only way for us to get pregnant and well, at this point in the game, we just so desperately want this.


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 9:08 am 
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I've heard good things about Vitex for people who are trying to conceive. Have y'all heard/read about di-chiro-inositol (DCI)? I've read that a lot of people have success with it (ovulation/pregnancy and/or reduction in hair growth, weight loss, etc.) but also that some don't feel it makes a difference for them. Here's a short video about it: http://www.chiralbalance.com/chiral-bal ... formation/

If you watch the video, keep in mind that Chiral Balance sells DCI. Definitely a biased source, but the video is interesting nonetheless.

Here's an abstract of a study that explains a bit about DCI, insulin, and androgens. This study is specific to lean individuals, but people of all sizes use DCI, just at different doses: http://www.ncbi.nlm.nih.gov/pubmed/15251831


ETA 11/30/10: I edited this post to replace my gender-specific language with gender-neutral terms. It's important to recognize that PCOS affects people across the gender spectrum, and to use terms that are inclusive to everyone. :)


Last edited by morecuminthancumin on Tue Nov 30, 2010 10:12 am, edited 1 time in total.

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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 12:38 pm 
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Thanks for the info mctc!

I did not get the Dong Quai, I read too much about side effects and well, if I am using two herbal supplements, how will I know if one or the other helped?


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 1:22 pm 
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The hardest part about trying to conceive is that you spend 2 weeks thinking "OMG, is this a sign of pregnancy?" And half the weird things you feel could just be a sign that you're getting your period. I am driving myself crazy.

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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 6:04 pm 
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morecuminthancumin wrote:
Steph wrote:

Does anyone have anything that's worked for hair loss? I just found the connection this morning on PCOS and hair loss. It's been falling out like crazy and making me nervous.


Aww :( I'm sorry you're dealing with that. Mine has thinned quite a bit- I'm lucky that it was mega-thick to start with, or it would be noticeably thin now. The hair loss has slowed in the past few years, and I'm not sure why. I'm just thankful, but also nervous.

I take biotin daily, and make sure I'm eating flax for omega 3s. I don't know if it helps, but I figure it's best to try to keep my hair as healthy as possible.

I've read that if you have an oily scalp it's best to shampoo often, as the oil can contribute to hair loss by plugging the follicles. Minimizing your hair product use (which can also plug follicles), blow-drying, and other heat-styling is recommended, too.

I also use the Lush "New!" cinnamon shampoo bar. It's supposed to "stimulate your follicles and encourage healthy hair growth". I don't know if it does that or not, but it's vegan and it smells good, so I'd buy it anyway. Here it is: http://www.lushusa.com/shop/products/ha ... ampoos/new


Thanks for all the tips! Unfortunately my hair is thin/fine to begin with, so it sucks even more. But I ordered some flax and biotin supplements to see if that helps. I think I would have been less upset if I had known to expect hair loss as a side effect. But glad this thread got started!

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"I can't help but feel bad for the Tofurky for having a beer can shoved up it's soy hole." --nickvicious


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 7:29 pm 
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Tofulish wrote:
I found it interesting that this site has a program for reversing PCOS. It has a test to self-diagnose, some good information and basically calls for a diet high in fruit and veggies along with exercise and nutraceuticals.


Which site are you referring to? I reread previous posts and couldn't find a reference, sorry if I just missed it! Thanks!


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 7:35 pm 
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Petunia wrote:
Tofulish wrote:
I found it interesting that this site has a program for reversing PCOS. It has a test to self-diagnose, some good information and basically calls for a diet high in fruit and veggies along with exercise and nutraceuticals.


Which site are you referring to? I reread previous posts and couldn't find a reference, sorry if I just missed it! Thanks!


Sorry! I thought I had it in there: http://pcos.in sulitelabs.com

They are selling a program to reverse PCOS, which I don't have a huge amount of faith in, but it does have a lot of info. Its also interesting that they say

Quote:
Some doctors will prescribe birth control pills to assist in regulating or restoring irregular or absent periods. But there is growing controversy over using pills because it is now thought they may actually worsen Insulin Resistance. While it is true that introducing the female hormone can counteract some of the effects of over-active testosterone production, the short-term benefits of restoring a period may be offset by the long-term effects of worsening the underlying root cause of the condition. Think long and hard before you begin taking birth control pills if you have PCOS.


Which is in line with the reasoning people use to explain why you should avoid soy.

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Last edited by Tofulish on Tue Oct 26, 2010 7:46 pm, edited 2 times in total.

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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 7:42 pm 
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wow, i never knew that fatigue was a symptom! that makes so much sense, i am tired all the time. even when i sleep 10 hours i will wake up refreshed and within a few hours i am exhausted.


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 9:15 pm 
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Tofulish wrote:
Petunia wrote:
Tofulish wrote:
I found it interesting that this site has a program for reversing PCOS. It has a test to self-diagnose, some good information and basically calls for a diet high in fruit and veggies along with exercise and nutraceuticals.


Which site are you referring to? I reread previous posts and couldn't find a reference, sorry if I just missed it! Thanks!


Sorry! I thought I had it in there: http://pcos.in sulitelabs.com

They are selling a program to reverse PCOS, which I don't have a huge amount of faith in, but it does have a lot of info. Its also interesting that they say

Quote:
Some doctors will prescribe birth control pills to assist in regulating or restoring irregular or absent periods. But there is growing controversy over using pills because it is now thought they may actually worsen Insulin Resistance. While it is true that introducing the female hormone can counteract some of the effects of over-active testosterone production, the short-term benefits of restoring a period may be offset by the long-term effects of worsening the underlying root cause of the condition. Think long and hard before you begin taking birth control pills if you have PCOS.


Which is in line with the reasoning people use to explain why you should avoid soy.


I've heard of the Insulite System. Mostly negative stuff- it's expensive, you take 18 pills a day (or something), it doesn't work. Has anyone tried it?

The BCP thing they mention is totally why I wish I had gone off sooner. I don't even want to know how much I've spent on BCPs that mask symptoms, when I could have been trying to treat the cause. It's worth noting that Insulite is also a biased source, but I've read similar info elsewhere.


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 10:05 pm 
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Absolutely. I wouldn't hold the system out as a reputable one, but I thought the point was an interesting one, and I thought some of the info on insulin resistance etc was good and pretty complete.

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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 10:40 pm 
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There are tons of links under the Research tab, too! Thanks for posting it!


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 10:43 pm 
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You know a ton about PCOS, and I'm so glad you started this thread. I am learning so much. Yay for the PPK and our lumpy ovaries.

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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 11:04 pm 
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Tofulish wrote:
You know a ton about PCOS, and I'm so glad you started this thread. I am learning so much. Yay for the PPK and our lumpy ovaries.


Thanks! I'm really glad that people are posting here- it's so nice to know that there are people who can relate.

As for knowing stuff- when my hair loss was at its worst a few years ago, I went through a rough patch where it was all I could think about. I spent nearly every minute of free time reading about PCOS. Obsessive researching is a way of coping for me, I think. :) I still find myself doing that when I'm bothered by a particular symptom. I need to be better about finding and citing quality sources for info, though- that's part of the reason I want to start compiling resources!


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 11:12 pm 
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littlebear wrote:
wow, i never knew that fatigue was a symptom! that makes so much sense, i am tired all the time. even when i sleep 10 hours i will wake up refreshed and within a few hours i am exhausted.


Me, too! It's been better since I went off BCPs, and even better since I started doing low GI/low sugar. I still feel like I tire easily compared to others, though.

I never drink enough water. I think I'd probably have much more energy if I stayed hydrated!


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 Post subject: Re: PCOS!
PostPosted: Tue Oct 26, 2010 11:28 pm 
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Steph wrote:
morecuminthancumin wrote:
Steph wrote:

Does anyone have anything that's worked for hair loss? I just found the connection this morning on PCOS and hair loss. It's been falling out like crazy and making me nervous.


Aww :( I'm sorry you're dealing with that. Mine has thinned quite a bit- I'm lucky that it was mega-thick to start with, or it would be noticeably thin now. The hair loss has slowed in the past few years, and I'm not sure why. I'm just thankful, but also nervous.

I take biotin daily, and make sure I'm eating flax for omega 3s. I don't know if it helps, but I figure it's best to try to keep my hair as healthy as possible.

I've read that if you have an oily scalp it's best to shampoo often, as the oil can contribute to hair loss by plugging the follicles. Minimizing your hair product use (which can also plug follicles), blow-drying, and other heat-styling is recommended, too.

I also use the Lush "New!" cinnamon shampoo bar. It's supposed to "stimulate your follicles and encourage healthy hair growth". I don't know if it does that or not, but it's vegan and it smells good, so I'd buy it anyway. Here it is: http://www.lushusa.com/shop/products/ha ... ampoos/new


Thanks for all the tips! Unfortunately my hair is thin/fine to begin with, so it sucks even more. But I ordered some flax and biotin supplements to see if that helps. I think I would have been less upset if I had known to expect hair loss as a side effect. But glad this thread got started!


I found out about the hair loss later, too. I hope the flax and biotin help!

Apple cider vinegar is supposedly good for your hair, too. I used to take it daily in water, but I've gotten out of the habit. It's also supposed to be good for controlling cravings and regulating blood sugar levels!

Here's a link to a short article about ACV on the Polycystic Ovarian Syndrome Association site, with links to research at the bottom of the article: http://www.pcosupport.org/newsletter/ar ... 3108-7.php


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 Post subject: Re: PCOS!
PostPosted: Thu Nov 18, 2010 11:40 pm 
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I just got semi-diagnosed with PCOS today by a doctor at Planned Parenthood. She didn't give me an official diagnosis, but she suspected I might have it. I wasn't really aware of it before, but now that I've read about the symptoms, it all makes sense. I have never had regular periods, I'm totally hairy (except the hair on my head, which has been thinning for the past couple of years - woo hoo!), I'm tired all the time, etc. I'm not overweight and my diet is pretty good, but could definitely be improved.

My health insurance at my new job won't kick in until January, so until then I'm just waiting around and worrying until I can see another doctor. I was told I needed to go for blood work and get my cholesterol tested. Diabetes runs in my family anyway, so I'm extra nervous about that now, too.

I really don't want to go on birth control or any other meds, but I would also like to have a period on a semi-regular basis. I feel overwhelmed by all of this.

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 Post subject: Re: PCOS!
PostPosted: Fri Nov 19, 2010 12:51 am 
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ashley wrote:
I just got semi-diagnosed with PCOS today by a doctor at Planned Parenthood. She didn't give me an official diagnosis, but she suspected I might have it. I wasn't really aware of it before, but now that I've read about the symptoms, it all makes sense. I have never had regular periods, I'm totally hairy (except the hair on my head, which has been thinning for the past couple of years - woo hoo!), I'm tired all the time, etc. I'm not overweight and my diet is pretty good, but could definitely be improved.

My health insurance at my new job won't kick in until January, so until then I'm just waiting around and worrying until I can see another doctor. I was told I needed to go for blood work and get my cholesterol tested. Diabetes runs in my family anyway, so I'm extra nervous about that now, too.

I really don't want to go on birth control or any other meds, but I would also like to have a period on a semi-regular basis. I feel overwhelmed by all of this.


My diagnosis a year ago was pretty much like this, too; the doctor suggested it and ran tests, but it never felt like a formal diagnoses. But on subsequent visits she called it that... it's an odd thing, I guess cause it is different from anybody.

I just don't get periods without hormones, and so for a year or so I would induce them every 3months-ish with progestin, and then went on the nuva ring for like 9 months. But I experienced weight gain and nausea on that and have been not feeling like seeing the doctor to get the prescription renewed. But I am sexually active, and now the fact that I haven't had a period since september and know not to really expect one is kind of unnerving. Oh, and I've had mild acne since I was 9 years old and I am almost 21... nothing's ever really changed it, and I'm at the point where I just want my face to match the rest of my non-teenager self!

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 Post subject: Re: PCOS!
PostPosted: Fri Nov 19, 2010 1:11 am 
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You didn't have to do an ultrasound or anything?

I felt pretty irritated with the PP doctor after I left. She threw around words like "uterine cancer" and didn't really tell me anything helpful. Her response to my questions was basically "wait until you have insurance, see a GP, and then get a referral to another gynecologist who will give you actual information." Maybe that's all she really could do, but it's still frustrating. So now, of course, I must turn to the internet for direction.

I had moderate acne when I was a teenager, but it's since cleared up pretty much (I'm 23). I still always break out right before I get my period, but since that happens so infrequently, it's not much of a problem. I actually sprouted two new pimples today, and I'm cramping like crazy, so maybe I'll actually get a period! My last one was the first week of September. Before that, I think it was five months. Sometimes I'll start to feel PMSy and think it's coming, but it turns out to be a false alarm.

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 Post subject: Re: PCOS!
PostPosted: Sat Nov 20, 2010 11:55 am 
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human_oven wrote:
My diagnosis a year ago was pretty much like this, too; the doctor suggested it and ran tests, but it never felt like a formal diagnoses.


I felt the same way, and I've heard other people express that sentiment, too. I guess it's because PCOS is technically a "diagnosis of exclusion"- docs diagnose it by ruling out other possible causes of presenting symptoms. I spent years saying "I think I have PCOS..." to medical professionals, without receiving a diagnosis. When I finally went off BCPs and got blood tests that "confirmed" PCOS, I felt this weird sense of vindication, 'cuz yeah, this has been affecting multiple aspects of my life since I was 14! Having a diagnosis (even one of exclusion) validated my feelings about it. The doc didn't make a big deal out of it- she said something like "your results are consistent with a diagnosis of PCOS" and not much else, but in my mind, it was a pretty huge deal.

ashley wrote:
You didn't have to do an ultrasound or anything?

I felt pretty irritated with the PP doctor after I left. She threw around words like "uterine cancer" and didn't really tell me anything helpful. Her response to my questions was basically "wait until you have insurance, see a GP, and then get a referral to another gynecologist who will give you actual information." Maybe that's all she really could do, but it's still frustrating. So now, of course, I must turn to the internet for direction.

I had moderate acne when I was a teenager, but it's since cleared up pretty much (I'm 23). I still always break out right before I get my period, but since that happens so infrequently, it's not much of a problem. I actually sprouted two new pimples today, and I'm cramping like crazy, so maybe I'll actually get a period! My last one was the first week of September. Before that, I think it was five months. Sometimes I'll start to feel PMSy and think it's coming, but it turns out to be a false alarm.


I've never had an ultrasound done. I have no idea if I have cysts or not. Despite the name, not all people with PCOS have ovarian cysts, and not all people with ovarian cysts have PCOS. In my mind, this calls for a more accurate name for the syndrome...

Big hugs to you, ashley! It sounds like your experience wasn't the best. I hope you get better treatment when your new insurance kicks in! If I were you, I would ask to be referred to an endocrinologist rather than a gynecologist (or both, but definitely the endo). Even though PCOS affects the reproductive system, it's actually considered an endocrine system disorder, so an endocrinologist will be better equipped to treat the actual cause.

Feel free to PM me if you ever want to! :)


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 Post subject: Re: PCOS!
PostPosted: Sat Nov 20, 2010 12:17 pm 
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Location: St. Louis
I'm another PCOSer. I guess it was about a year ago when I was officially diagnosed. I've never had a regular period and have always had issues with energy and weight gain and such. The gyno I went to finally did tests and helped rather than just giving me birth control to regulate things and shoving me out the door. My glucose was apparently fine, but hormones obviously off. Testosterone a little high, but I can't really remember the details now. I had the internal and external ultrasounds which showed lots of cysts all over and was a bit scary, but I've since made many changes (many which I need to get back to and implement a bit better again). I've been off birth control about 1.5 years or so and am FINALLY having a semi-regular period for the first time in my life. After regulating my diet and losing about 18lbs I finally started having a period. Recently it started acting up again, but I've been acting up with not watching my diet, so for me I think it really goes hand in hand. The diet and exercise components were really important for me. I also take biotin/omega 3s/basic multis and try to eat lots and lots of smoothies/salads/veggies/beans/lots and lots and lots of water/etc. Lots of basic whole food type stuff. Plus, walking lots and doing other small exercises and yoga practices here and there. Once I had an official diagnosis I cried for a bit (have been dealing with problems since I was a kid but they just popped me on a pill and never really tried to help in any other way...was so relieved to actually have someone listen!), but then went to researching and felt really empowered by what I read and learned. Glad to have others who can share tips and relate and such. I do have a bit of a hairy lip but luckily my hair is pretty light so it's easier to manage. Head hair has always been really thin as well.

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