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7 Things You Need to Know About Life With Polycystic Ovary Syndrome

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At 39, I’ve had more than 21 years of experience with the effects of polycystic ovary syndrome (PCOS) on my body. My experience may differ slightly with others who also have PCOS because it affects people differently. This is my daily routine and it has become my norm. I don’t even think twice about it because it’s how I live. How does it differ with that of someone who doesn’t have PCOS? Let’s see if you can see the differences.

1. Brain Fog

I wake up every morning and no matter how well I slept, I feel foggy. So foggy that I need to ask my children to repeat themselves several times, because even when I look at them and concentrate, I can’t always process what they are saying. It takes my body almost four hours from the time I wake to get my brain to properly process any conversation I have.

2. Caffeine

Yes, that brain fog has me reaching for a cup of coffee from the second I wake up. Now I have to decide whether caffeine is the way to go. Why? With PCOS, caffeine can be either a negative or a positive.

Pro: Studies show that coffee may help prevent diabetes and boost memory. That’s a bonus, since women with PCOS are at higher risk for diabetes… and the brain fog issue is also pulling me toward that delicious cup of coffee. I can smell it as I talk to you about it.

Con: Coffee is a diuretic. It can deplete vitamins such as magnesium, iron, zinc and B vitamins. All of which women with PCOS can be deficient in. My own brain argues that I take daily supplements, so maybe this isn’t an issues for me. True or not, it pushes me towards that cup.

Con: Caffeine can increase anxiety and panic issues. Definitely a no-no for me since I’ve had anxiety issues in the past.

Con: Coffee can have an effect on estrogen and testosterone hormones. Will drinking this cup actually increase the amount of extra hair I already have on my chin?

So many things to consider when you just want to reach for a cup of coffee with your breakfast. Why do I have to think so much in the morning?

3. Food

My kids… they want pancakes. Oh. Em. Gee. I haven’t had real pancakes in such a long time… with syrup! Nope, not a consideration. Why? Well here’s why things can go south. If I choose to eat the same pancakes that I make my children, I deal with the after effects. It causes a spike in my blood sugar (and no I’m not diabetic), which then leads to what I refer to as my carb crash.

What’s that mean? I literally crash. I’m exhausted. I have no energy. I feel lethargic and at times if I have too much, I get a massive migraine. So what’s my option? Well, I can make a batch of protein pancakes or I can choose to make another meal combining both protein and simple carbs. So, eggs paired with veggies work. Greek yogurt with blueberries work. Are there options? Plenty, but it’s not as simple as grabbing a bowl of cereal to start your day. Every meal takes careful thought and consideration. Feed my body to function or carb crash?

4. Hair… too much or too little.

Hair. It’s here, there and everywhere… or completely gone. I have a kit in the bathroom. It consists of tweezers, razors, shaving cream, waxing strips, hair removal cream, moisturizer, and special shampoo.

I have hirsutism as a symptom of PCOS. That means I grow hair in places that women do not want it. My legs and underarms are hairier than most women and I have had whiskers on my chin since I was 18. As I have grown older, the hair on my chin has increased and the random four to five hairs that I started with now have buddies… about 40 of them. They’re starting a sorority on my face.

Every morning… and I do mean every morning, I have to decide what route I take with the stubble. Are they long enough to pluck? Will today be a razor day so that I ensure I get all of them? Will I be dealing with stubble by the end of the day, or the next morning, just like a man? I can try the waxing strips, but some of those whiskies are just stubborn and don’t want to get yanked out. Hair removal cream? That stuff just smells so bad and my face is sensitive. I could use it, but then I may burn the skin if I leave it too long. It really won’t last much longer than shaving, so what the heck do I decide on?

How can I have so much hair and so little at the same time? I have an influx on friends on my chin, but they may be just removing themselves from the party on my head. Thinning hair, bald spots… that’s just lovely. It’s what every girl wants to deal with. My hair has always been thin, but as I age, it’s getting thinner. I don’t know if everyone notices, but I certainly do. I know what I was used to and what I have now. I know that I have to position my hair clips certain ways so I don’t look bald. I started using a special collagen and biotin shampoo last year along with an oral biotin supplement. It’s helped as I have new baby hairs popping up, but it’s not a complete solution. I’ve learned not to wash my hair everyday so that I can preserve what I have, so dry shampoo has become my new best friend.

5. Exercise

When we have PCOS we are told to exercise to lose weight:

“Exercise daily.”

“Don’t exercise too much because it may raise your testosterone levels.”

“By the way, losing weight may be hard!”

“Losing weight may not help.”

“When you exercise, weight lifting and HIIT activities are best.”

“Don’t do too much but make sure you do enough.”

… what? Can we find anything that’s more contradicting?

The laws of the weight loss world are eat right, exercise, burn more calories than you consume. Results ensue.

I had someone write to me the other day, “You know, the reason that you aren’t losing weight and you’re stuck at a stagnant weight is because you need to increase your activity to stop the metabolic process from stalling.” In theory, yes, I agree. It’s what I was taught, too. But guess what? The rules don’t always apply with PCOS. I’m a prime example. So are several other very, very frustrated women I know.

Before you say, “Well, you must not be doing it right then,” I implore you to just stop. Stop and listen hard. We are doing it right. We are doing everything right. How do I know this? Well, besides my extensive background in physical education and health, I work with a personal trainer. I’ve worked with nutrition specialists. I’ve worked with doctors. My friends have done the same. We are all super motivated. We are all extremely frustrated. We do what we are told and we see no results. Our bodies just rebel. We are not looking to be supermodels. We have a very different motivation that most. We want to live. We want to live without pain, without being tired, without looking like a man, without the struggle to have babies. So every day we have to decide… is 20-30 minutes of exercise really enough? When your brain and the world around you tells you to do more, but your doctors tell you to keep it at this amount because it can cause problems elsewhere… what would your decision be?

6. Acne

Where did that pimple come from? I’m 39. I’m not supposed to have acne. It’s not just a regular old pimple either. It’s that cystic acne… and its on my back… or my stomach… or my boob! I’m breaking out behind my ear. What the hell? In fact it’s getting more common as I age and it’s so very frustrating. Open back dress? Would love to, but no. I have scars from the amount of acne I’ve had. I don’t feel comfortable showing it off.

7. What alters my hormones?

Everything from food to beauty products have to be taken into consideration. I eat organic when possible. Why? Pesticides on fruit and vegetables may contain man-made chemicals that can affect my endocrine glands and even try to mimic my hormones. Animals that are injected with growth hormones can get absorbed into our body as we eat them. So, it may cost me more to buy my groceries but it costs less than the medical costs that incur when I have to worry about treatment options.

There are endocrine disrupting chemicals in everyday products from shampoo, to deodorant, to makeup and even in our toothpaste! Yes, I can do harm to myself by brushing my teeth or washing my hair with the “wrong” products.

I’m not saying that life without PCOS isn’t hard, but it’s a general concern of my everyday life as the effects of PCOS have been so hard to control. The symptoms are unpredictable. They show at inopportune times. What used to work, no longer does. How do you find a solution when the medical community can’t seem to find one? My answer? I advocate for myself and for others. That’s the way I will spend the rest of my life.

Have you just been diagnosed with PCOS? You are not alone. PCOS affects one in 10 women. Fifty percent of us are going undiagnosed and feeling alone. Be your own best advocate. Look to the PCOS community for solid help. It’s there. It’s available to you for free. Support one another.

Follow this journey on Finding My Happy.

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Originally published: September 14, 2017
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