Overwhelmed by PCOS - Suggestions Anyone?

by Emily
(California)

Hi, my name is Emily and I am 16 years old, I was diagnosed with PCOS about two/ three months ago and was prescribed metformin and spironolactone.

I've been taking the medicine for a little over a month and a half and noticed no results even though my doctor told me I should start noticing changes right about now.

I never had mood swings or depression before finding out about polycystic ovarian syndrome but ever since going online and reading that there is no cure for PCOS, I feel absolutely helpless and cry on and off throughout the day every single day and have sudden moments where I'm filled with pure rage.

I watch all my friends becoming beautiful women and I feel like I'm just declining. I have dark hair on 70% of my body, my hair is thinning, I haven't gotten my period and I'm 40 pounds overweight.

I don't feel anywhere close to feminine. My mother constantly tells me that I'm being over the top and to just accept it and that "I shouldn't place my value in my looks" but I find it hard to be around her because she's beautiful and has men talk to her all the time so how could she understand!?

I feel so alone I try to talk to family about it and I always end up feeling like I'm self-centered brat.

I was wondering if any of you suggest taking a natural approach instead of medicinal route?

I'm really into solving illness naturally so while I was searching PCOS online it seemed like most women saw more results doing it naturally through diet, exercise and vitamin supplements than taking medicine.

One thing I have to ask is: will the hair stop or not be as dark, excessive and coarse? It is one of the things that REALLY bothers me besides my weight; I've had 4 laser hair removal treatments and saw results but just not what I was hoping. I wouldn't say the hair is as bad as it could be but, I feel like I shave and it grows back within hours and then on top of it I get covered in razor bumps that are yellow and painful.

I feel so overwhelmed with all the information on this condition and don't know what to do or where to start if any of you could respond with anything it would be really helpful.

Comments for Overwhelmed by PCOS - Suggestions Anyone?

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Way to go Emily!
by: Sonal

You're not alone Emily. Many women have PCOs but they just don't know it. I am 41 but I had PCOs starting at 16-ish but back in the good old days doctors didn't really know what it was so I think science and doctors have come a long way. Doctor's are not always the best resources so try Naturopaths as well.

For hair removal (I have struggled with this tons) laser is the best option. You might have to keep doing it past the 6 treatments. Try to do it every 7th week for 6 treatments and then stop and see how it goes. I go back every once in a while. Also, saw palmetto is supposed to help.

For weight control, the only thing that has helped is a high protein, low carb diet with lots of weight lifting (4 times a week). I'm also a strict vegan which is healthy but it does mean I'm eating more carbs that a meat eater would so there are options for you.

Metformin helped me as well but I also did very well on natural supplements that didn't upset my stomach. The best ones for me were Metagenics Insinaise to regulate blood sugar.

I'm not a doctor but I do think the key for me is to manage my blood sugar, insulin. So try to limit extra sugars.

You'll do very well if you take care of your body and health. PCOs is just a way for life to tell you to take care of yourself. You're lucky you got the message at your age and not way later.

Best wishes

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Start with a Clear Head
by: Dorothy

First up I am 52 I was diagnosed when I was 18 in Australia they knew little and it was called Stein and Laventhals Disease. The way I was told was a shock and no one knew how to assist me. After the initial shock and and not knowing and with no help or support from family or friends, I made a clear decision, I was going to own it ...it was not going to own me. From then on I referred to it as a "condition" not a disease...Just that made me feel better the physiological feelings from that alone helped. As I have travelled a lot I find a mild climate suits me better...Hot and humid climates seem to speed up or magnify the challenges. I also find vitamin e has been a great help when my periods go mental..as in they are not there for months then 3 weeks of pain and misery...and knowing nothing can be done (because my doctor will schedule yet another surgery) vitamin E helps that situation. There is many other things you can do but the informative advice you will receive here is great. XO

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I know how you feel
by: Yvonne Dyer

I am now 37yrs old but I tried all kinds of natural remedies and nothing has worked. I then stopped taking in gluten, sugar and lowered my carb intake and that has slowed down my hair growth and I started losing weight, slowly but surely. That is my story and I hope it helps. The one big thing about PCOS is we gain weight in belly first so do core workouts for tummy a well. Check for hypothyroidism also that med has helped me not lose as much hair on my head. One last thing, don't dwell on your condition, this is just one thing about you, not everything and love your self for who you are. I promise you others will too. God bless.

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MTFHR gene
by: PCOS Editor

Hi Anonymous,

I'm not sure about the prevalence of the MTHFR gene mutations with respect to polycystic ovary syndrome. The limited research I've seen seems to be either inconclusive or conflicting.

MTHFR gene mutations have been associated with congenital abnormalities, heart disease, stroke, diabetes, hypertension, psychiatric disorders and some cancers. But its effect on PCOS remains unclear, at least to me it does. A recent study from China suggested MTHFR gene mutations increase the risk of PCOS in Europeans but not Asians.

PCOS is a very complex disorder involving the alterations of significant number of genes. In fact, there is disagreement on what PCOS actually is.

MTHFR is one of dozens of factors that must be considered with dealing with this disease.

I agree that the methylated versions of folate and B12 are preferable.

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Vitamin D amount
by: PCOS Editor

Hi Monique,

The need for vitamin D varies widely, according to your disease state, location, sun exposure, skin color, age and various environmental factors you're exposed to.

Some practitioners suggest a guideline of 35 IUs of vitamin D per pound of body weight.

But the fact is, it's impossible to know how much you need unless you get a vitamin D test.

I myself need to take about 10,000 IU per day just to keep my vitamin blood levels in the optimal range.

If your vitamin D test result is anywhere below 50, that suggests to me that you could benefit from supplemental vitamin D.

Some people with PCOS have reported to me that their vitamin D was as low as 8. To my mind, that is a severe deficiency and must be corrected if PCOS symptoms and general health are to be improved.

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You are awesome Emily !
by: Leslie

Dearest Emily,
Give yourself a great big hug. You are doing the most important thing that you could do...taking responsibility for your own health. I know you will be successful.

Much Love,
Lesli

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Vitamin D
by: Monique

Hello Emily happy you are doing better and headed in the right directions.

This question is for the pcos website helper. I wanted to know how much Vitamin D is recommended and what are some precautions?

Thanks.

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Wow!! This is super helpful!!
by: Rose in Austin, TX

Reading about Emily and your suggestions has inspired me to renew my efforts. Especially in the exercise department!

To Emily:
You can do this BabyGirl!! I have PCOS and when I follow the eating plan and get plenty of exercise and rest I get my period. I was able to have a healthy pregnancy! My son is now 13!! Life is not over, you just have to make some lifestyle adjustments and you will live a very full life. I wasn't diagnosed until I was in my late 20s. I would have loved to have known about it when I was in my teens. We're all cheering for you!!!

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MTHFR gene mutation?
by: Anonymous

!!!! Please look into the issue of MTHFR gene mutations..about 40% or more of the population have issues with this; iit causes blockages to the methylation cycle- which is necessary for every function in your body.

The cure is simple, straightforward and risk free. In fact you could try the cure (over the counter supplements) without even getting tested.

The primary supplements are methylfolate and methylcobalamin. You must stop taking supplements that contain any form of folate and b12 that is not in the methylated form.

Most if not all refined flour products have been fortified by law with the unmethylated form of folate. If you have gene mutation this form of folate actually BLOCK the form you need for proper methylation.

If you can find a naturopath versed in MtHfr mutations and read all you can about MTHFR gene.

Here is a great starting place
http://mthfr.net

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My Daughter Has PCOS - Don't Feel Alone
by: Tanis

Emily, I am sorry your mum has not been supportive or any of your family for that matter. My daughter, Cierra, was diagnosed a year ago last October. She is a beautiful girl but we noticed in one year she went up 20 lbs; her period was irregular (I did not like that) and she was very moody and frustrated. She ate healthy, worked out all the time and could not lose one lb.

After many doctors visits, getting her on BC, seeing a dermatologist to help with her acne (now has pretty skin most of the time...occasional breakout like all teenagers), we finally got a referral to an endocrinologist (forgive me if I spelled that wrong). She tested her bloods and confirmed PCOS. Put her on Metformim (low dose 500mg); after 3 months they upped it to 1000mg; and after another 3 months to 1500mg. Through all of this we watched what she ate (she is more religious than myself); she exercises at least 5 x week and has weight training at school 2 - 3 x wk on top of that. Over the last 6 months we noticed her weight has gone up by about 8 lbs, so we are now getting referred to a new doctor (our medical system demands that in the US) and may have to up the metformin to 2000. I had not heard about the Vit D deficiency and will definitely start her on Vit D until we see a doctor (that could take weeks). She probably was not as diligent as poss on exercise and food as I was diagnosed with breast cancer in October; but we are both fighting and she will get thru this and drop those unwanted 8 - 10 lbs and I will fight and win against Cancer. Don't feel alone! You can do this. Big thing with Cierra; we cut out most carbs (i.e. pasta, rice, bread). Only carbs she gets are thru veggies of fruit. I can tell you that she also allows herself a cheat day where she can have something once a week that she has really craved. You also have to live and be happy!!!!

If anyone else has other suggestions about what she can be doing, that would be great.

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Another update
by: Emily

Hello again, just a little update I wanted to say I just got my period! :D I am so happy!

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Awesome!!
by: PCOS Editor

Emily, that is AWESOME!

OK, now that you have some momentum, keep it up!

We can give you more tips when you're ready for them. Give us a progress report in 2-3 weeeks.

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Hello(:
by: Emily

Hi, just wanted to say after eating low carb for almost a week straight now I've lost 4 pounds. Since i've changed my diet I've been drinking two cups of spearmint tea daily, taking vitamin D and incorporating flax seed in my diet. I have noticed that I have more energy and when I wake up in the morning I don't feel tired. I recently just got over bronchitis but I've been going to the gym for two days now for 45 minutes and taking my dog on 20 minute walks around the neighborhood. For the first time I actually feel like going out and exercising. I am much happier and more optimistic about myself and managing pcos.

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Vitamin D
by: PCOS Editor

You'll find it easier to control PCOS if you can get your vitamin D levels to an optimum level, perhaps around 50 or even higher. Take supplemental vitamin D until this level is reached.

Check your vitamin D level again in 2 months. If it is still well below 50, I suggest you increase your daily dose.

I can assure you that you will get some relief from this disease and you will feel much better about your life. Over the next year or two, you could completely transform your life. You just have to work at it and keep working at it. I know you can do it!

Give us a progress report within 2 weeks and let us know if you're ready for some additional ideas.

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Vitamin D
by: Emily

I do have a Vitamin D deficiency, I was told about it before finding out about the pcos. I've been slacking on the vitamin D lately so i'll have to start taking it again so I'll be taking it tonight. Thank you so much for the information you've provided me with i've felt lost on what to do since the diagnoses.

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spearmint tea
by: PCOS Editor

I forgot to mention that consumption of spearmint tea has been shown to help reduce hirsutism (unwanted hair growth). It has been used for centuries in the Middle East for this purpose. So in addition to green tea, spearmint tea could be helpful in your situation.

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Let's get started with defeating PCOS
by: PCOS Editor

Hi Emily,

Thanks for your story. There's good news and bad news.

The good news is that you can control polycystic ovary syndrome and all of its related symptoms. The bad news is that it is a life-long condition that will require continuous attention and focus on your part.

OK, so let's get started.

1) Free yourself of any expectation that family or friends will understand you. They don't have this disease and thus they have no idea how it really feels and how devastating it can be.

I'm sure your mother loves you but she just doesn't understand. Or perhaps she feels helpless.

So you will have to take personal charge of your health. If you need your mother's support or permission for something specific, request her support. Otherwise you're on your own.

2) You're not alone. There are hundreds of thousands of people your age around the world who have the same disorder. Over time, you may find some of them. Maybe you can find a way to support each other.

3) It's natural to feel overwhelmed, out of control and that your life is over. This is because you don't yet understand the actions required to stop this disease process. Give yourself time and you will learn what to do.

4) The cause of PCOS is quite complex and not fully understood. I'd venture to say that your problems began while you were still in your mother's womb, and during your very early development years (ages 1-3). The result is that your body has been "programmed" to act in a certain way.

So your job now is to do certain things to modify this programming. It's like adding better apps to your smart phone. Your smart phone works better if the apps are better.

The other thing to understand is that this is not just a disease of the ovaries. It is a systemic, body-wide disorder. So the idea is to fix the entire body, not just the ovaries.

5) Metformin and spironolactone are used to normalize the hormones that are causing the symptoms. Their effectiveness varies with the individual, and with the dosage used. So I would necessarily expect them to make your symptoms vanish in a couple of months. Both of these medications have benefits and side effects. Personally, I have reservations about long term use of spironolactone. I'm a little more comfortable with metformin, IF your doctor has established that you have an insulin dysfunction.

Drugs are a complex topic to be explored another time. Regarding metformin, there are natural alternatives that are shown to be equally effective. But first, master the basics: diet and exercise.

6) You must change your diet. This is an absolute requirement for long-term success. You must control what goes into your mouth.

But it's complex. So let's just start with 3 easy steps.

a) Immediately stop consumption of all soft drinks of any kind. None. Nada. No exceptions. If thirsty, drink water, herbal tea, or green or black tea.

b) Have at least 4 servings (at least 1 cup of volume per serving) of vegetables every day. Potatoes do not count as a vegetable. So you're going to eat salads, steamed vegetables, raw vegetables, etc. -- whatever it takes to total at least 4 servings per day as an absolute minimum.

c) Do not consume ANY processed food product that has "high fructose corn syrup" on the label.

Can you do this? I'm sure you can. Get back to me in one week and report your results.

The above is only the start of long dietary journey that will transform your life for the better.

7) Exercise. What are you doing for exercise?

In order to normalize your hormones and start to manage your troublesome symptoms, you must exercise and be physically active. This is not an option. It is a requirement.

Starting today, I want you to exercise your body for at least 30 minutes, six days a week. I don't care what you do. You could start with a 30 minute walk. Do anything, any sport, any activity you like to do. Just do it. And be 100% consistent. 30 minutes a day, 6 days a week.

Report back to me in 1 week with your results.

8) Get more medical data. In my experience, doctors do not do a thorough diagnostic workup, meaning they do an incomplete job in determining what is going wrong. So once again, the burden is on your shoulders.

Let's start with just one thing. Vitamin D. An optimal vitamin D level is required if you are to fully control this disease. The majority of women with PCOS have a vitamin D insufficiency, so this needs to be investigated in your case.

Arrange to get a vitamin D test from your doctor. But maybe your doctor or your mother thinks a vitamin D test is unnecessary, or that vitamin D has nothing to do with PCOS. This is bullshit, based only on ignorance. You need to find out where you stand.

When you get your vitamin D test result, report back here and let's see what to do.

9) Polycystic ovary syndrome is like a giant jigsaw puzzle. We solve it one piece at a time. It can't be solved all at once.

I've given you a few puzzle pieces to work on now. Gradually, you will discover more pieces to the puzzle and it will all be solved as best it can.

There's an old saying: Rome was not built in a day. It was built brick by brick.

I could give you dozens of things to do and supplements to take. But it would be overwhelming.

So get busy with the tasks described above, then report back for the next steps.

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