polycystic ovary disease

[leminchyl]

does anyone here have it or know someone who does? im going wednesday to get my hormones tested because im almost 28 and i still suffer from acne, i have excess facial hair (thank god for hair removers), and im small chested... these are all signs of PCOD. im scared because it can cause infertility, too. but i figure its best to get this checked out now. if anyone here know anything about it, please let me know. i dont know anyone who has it-- i just know what im finding on the internet.

[IamJen]

I visit another chatboard where there are several women with PCOS, and they often recommend www.soulcysters.com. www.aphroditewomenshealth.com has excellent message boards too, where there are some PCOS discussions. :)

Have you been having period troubles as well? The symptoms you mention above are generally only secondary to the menstrual problems.

[Jinga]

I had several tests including an ultrasound that showed my ovaries were covered with tiny cysts. Some of this is normal and PCOS is hard to diagnos 100%. My doctor said I likely suffered from it. Regardless of the official diagnosis, your symptoms can be treated the same way. Likely your doctor will recommend going on a birth control pill. It regulates your hormones and keeps any new unwanted hairs from starting to grow (but can't do anything about those already there). I decided against the pill as my symptoms weren't that horrible. Like you, I am still concerned about fertility. I just hope that when I'm ready to be a mom I'll be able to either adopt or give birth myself.

Definately ask your doctor about your options.

[leminchyl]

ive been on birth control pills for probably 6 years and there hasnt been any change. i dont have menstrual problems, although i did before i went on the pill.

[Jinga]

If the pill isn't enough, they also have stronger meds. You just have to be careful about those if you ever plan to have kids. They are seriously harmful to the baby due to the hormone interaction. My doctor only lets people take it if they are also on BC. Good luck with the doctor, hopefully you'll have some more answers soon.

[leminchyl]

thanks, jinga. ill post a message after i see the doctor on wednesday.

[ksfc]

Hi

We tried to get pregnant for a few years without success. For various reasons, I didn't want to go down a medical route of diagnosis, etc.

I came across a book "Taking Charge of Your Fertility" by Toni Weschler (many of you will be aware of FAM). Through this, I realized that I wasn't ovulating very often - maybe every 3-4 months - even when I was bleeding. Given other factors (my weight, etc) and after a lot of reading, I concluded I probably had PCOS and then went to look at treatment options for that.

Again after a lot of reading in the scientific and medical journals, it seemed clear that losing about 10% of body weight was just as (if not more) effective than the metformin and other drug treatments - and the side effects of losing weight are all good, unlike drug therapy! The best and healthiest way I know to achieve and maintain a healthy weight is a lowfat plant-based diet combined with some exercise. So that's what I did - cut out all animal foods, refined oils and reduced how much bread and pasta and other refined grains I ate. I went for a 30 minute walk most days. In three months I'd lost 30 pounds and was pregnant. :-) Perhaps you can imagine how I felt after years of trying and failing!

So all that is well and good, I hear someone say, but not conclusive about having PCOS, since it was my own hypothesis. Except that during the 8 week scan, the doc asked how many rounds of IVF I'd been through and what drugs I'd had. I asked why she was asking, and she said that my ovaries showed extensive scarring from cysts (but no current ones) so since I had PCOS and was pregnant, she assumed I'd had to go the IVF route.

I'd belonged to PCOS and infertility support boards for years and so was thrilled. I had dozens of requests for information about what I did, so wrote up my experience and sent it to them. Some people were very resistant to the idea that PCOS is (largely) caused by and can be cured by diet, some thought it made sense. I know I had two women email me later to say they were pregnant after changing their diets. Unfortunately, I can't find my write-up anymore - it's on a computer whose hard drive failed.

Here's a link to some discussions of PCOS/PCOD where women talk about their experiences reducing or eliminating the problem through diet:

http://drmcdougall.com/forums/viewtopic.php?p=7512&sid=77df0d025ce075e490d0df51f4c7d2a6

These links are about endometriosis, which I know isn't PCOS, but both are hormone-related diseases with probably similar root causes.

http://www.drmcdougall.com/stars/051205starpaula.html

http://www.pcrm.org/health/prevmed/endometriosis.html

I have two beautiful children now, by the way, with no drug intervention.

Good luck!

[leminchyl]

ksfc, wow! im trying to lose a little weight and ive heard that it can affect women's hormones. i'm a little bit overweight, but nothing crazy- i'm 5'3 and weight 140#. i carry most of my weight in my butt, hips and thighs, so im not stressing my heart like someone who would carry that weight around their waist (i even had lipo a few months ago to "sculpt" (not reduce) my inner/outter thighs and hips). thanks for the links. i'll check those out today.

[ksfc]

The weight thing can get confusing, especially for hormone-related and insulin-related conditions. Excess weight can be a symptom and/or a cause of an underlying problem. And an underlying problem (i.e. a diet high in animal foods and/or fat) can cause serious weight issues in one person but only a few extra pounds, or none, in another. The way I see it is that our individual bodies and genes determine which body system is going to break down first under the stress of an external factor (like bad diet). Everyone can point out someone who died of heart disease or a stroke and yet wasn't visibly overweight. Or someone who they know eats a terrible diet and stays skinny (but who knows what condition their arteries are in).

So anyway, all that was merely to say don't get too caught up in the weight, per se. (Not that it looked like you really were, I'm more anticipating it based on conversations I've had with others) The root cause of PCOS or endometriosis can express itself with excess weight for one person but not another. I'm not sure all that made sense! :-)

Good luck - I hope you find information that you can use.

[LucidAnne]

i thought PCOS is now considered a metabolic disorder primarily (ie: diabetes/insulin resistance) and the infertility, etc is actually a symptom. ???

[jenna]

I've never been formally diagnosed but I saw an endocronologist and other doctors and I have quite a few of the symptoms: long-time period trouble, acne, excess hair, high blood pressure, weight gain and trouble losing, other ones. It's all a ton of fun.

[leminchyl]

I've never been formally diagnosed but I saw an endocronologist and other doctors and I have quite a few of the symptoms: long-time period trouble, acne, excess hair, high blood pressure, weight gain and trouble losing, other ones. It's all a ton of fun.

i'm right there with you. i see the doctor tomorrow, so hopefully he can tell me what's going on.

[IamJen]

Good luck! I hope you're able to get some answers at least. :)

[leminchyl]

i saw the doctor yesterday. i had blood taken (like 10 of those little vials worth) and he's testing me for hormones and nutrient stuff. i have to go off the pill for 3 months to see if i have pcod, then i will get my blood tested again. he didnt seem to worried about anything, so im not.

[LucidAnne]

hopefully things will get answered, either way.
please keep us posted!

[leminchyl]

they called back with my lipid profile- all of my cholesterol levels are good, but i need to raise my good cholesterol. the nurse made it sound like it wouldnt be hard to do-- get back into working out 3 days a week and throw some more oils in when cooking. easy enough. i should get the other results (hormones, etc) this week.

[leminchyl]

dang. the doctors office called and said that my estradiol/estrogen levels are low. i have to go in christmas eve to get more blood taken and i might have to be put on hormones.

[paganveg]

I was diagnosed with PCOS 8 years ago. I had a problem with secondary infertility, but that resolved itself once I started exercising regularly ,lost a bit of weight, and started using using herbs.

I do however have lots of other symptoms. I have really heavy, painful periods. Because my free testosterone levels are high, I have some thinning hair, and hair in a few places I'd rather not have it. I also have a tendency to put on weight easily.

Instead of traditional meds, I have been trying a few other treatments with pretty good success. I use Vitex, an herbal supplement, to help regulate my hormones. I take a chromium supplement to help regulate my blood sugar, and Saw Palmetto to lower my testosterone levels.

For me, those are the treatments that work best, at least for the time being. I would suggest joining an online community, like www.soulcysters.net . You'll find lots of info and support. :)

[leminchyl]

thanks, paganveg. my doctor said that if you have a period, you dont have pcod. or maybe i heard him wrong. either way, ill ask monday when i go to get more blood taken. im gonna write down those herbs that you take and ask him about them.

[cheech]

I'm actually kind of confused about this too. Which comes first the cysts or the insulin resistance? I definitely believe that you can heal your body through food. I've been vegan since I was 16, but none of my healthy eating could stop the 65 pounds I gained from the PCOS. There is this ridiculous belief in the vegan community that if you are vegan you should be thin. Or if you are obese it is because you eat the standard American diet and are lazy. Puh-lease. I'm a health fanatic and I work out every day. The only thing that seems to be helping me is Metformin combined with a low glycemic diet.

BTW, does anyone know if there is a connection between PCOS and soy?

[cheech]

Remember that PCOS is a syndrome. You might have all of the symptoms, you might only have a few of them (although I think the classic symptoms are hirsutism, IR, and menstrual irregularity). You can actually have polycstic ovaries and not have PCOS, or not have any cysts and have PCOS. Weird, huh?

[Jinga]

You can have pcos and have your period. It just tends to be irregular due to hormone imbalances or complications due to cysts.

You can also have PCOS and not have insulin problems. There are so many different symptoms and ranges of severity, its so complicated.

I don't think there is any evidence that soy and PCOS are connected.

[ForTruth]

BTW, does anyone know if there is a connection between PCOS and soy?

"They," (being the medical community) from what I've read, state that it is believed that PCOS is hereditary. I believe so because I started having symptoms when I started to go through puberty. I also have a cousin on my father's side with PCOS. Once I was diagnosed, my mother states that my grandmother had many of the symptoms herself.

[born2shoplc]

sorry to bring up an old post but I was diagnosed with pcos a couple weeks ago. I have not had my period since June, and wanted to know what else there is besides birth control that I can take. I don't like taking prescriptions, I tend to like more natural things.

[ksfc]

Sorry to hear that. :-( I understand your not wanting to take the prescription meds if you can help it.

The first thing to try is getting your diet as healthy as possible - eating relatively unrefined starches (i.e. potatoes over pasta, rice over tofu, whole beans over bread), lots of fresh and frozen vegetables and fruit, and as little refined oil/fat as you can. Moderate how much of the high fat plant food you eat (olives, nuts) - you'll get plenty of essential fats in their natural state in foods like oatmeal. If you eat any dairy and eggs, stop. The hormones in dairy products, natural and artificial, will contribute to your hormonal problems. Dietary fat plays an enormous role in hormone production and regulation.

Do moderate exercise at least 3-4 days a week - even half an hour of walking.

If you are vigilant about your diet and exercise, I honestly believe that most of the various symptoms and problems classified under PCOS will go away for most people. Sure, it won't cure it for everyone. There may be a genetic predisposition, but that's outside our control and there need to be environmental triggers for it to develop. But I'm fairly firmly in the camp that believes that many of the common diseases we have today are primarily caused by diet (genetics create weaknesses, but generally are not in themselves sufficient to cause the disease). So that's my bias. :-)

And about having periods with PCOS - bleeding is not the same as having a period, which is getting rid of an unused egg. It is entirely possible to seem to have your period but really be anovulatory.