PCOS Awareness Month: I'm 1 in 10.

 
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I’ve had irregular periods my entire life. By the age of 15, when I still hadn’t started having regular cycles, my mom took me to the doctor where, through a series of tests, they found some sort of mass. After they did more tests, it had disappeared, so they gave me brith control to coax my period to start.

Ever since then, I’ve only had about 1-2 periods a year.

My friends told me that wasn’t normal and kept urging me to go to the doctor. I think I knew deep down that something was wrong, but I’d been so traumatized by being poked and prodded at such an early age. I kept putting off a check-up. 

At the end of 2016, a few months before my wedding, I finally went for a checkup with a OBGYN. I explained the irregular periods. They did some blood work and an ultrasound and then she told me. 

I have Polycystic Ovarian Syndrome. 

My world tilted a little. What? I didn’t expect to be diagnosed with something. I'd never even heard of that. PCOS?

She explained that I had a bunch of small cysts growing on my ovaries because my body wasn’t producing the right amounts of hormones, which is why I didn't have a period. There were other side affects to this: acne, struggles with weight, depression.

Everything made sense. For the first time, I didn’t feel crazy. There was a reason behind some of the things I’d battled for years.

She gave me the option to be put on birth control or another medication, one used for diabetes treatment, although she told me people don’t have as much success with that.

I agreed to birth control. My periods started again.

 

The Aftermath

The next several months were a blur, doing all the things that come along with getting married. Chris and I got through the wedding and back from the honeymoon and started adjusting to life together.

It was fun, but it was hard getting into a routine. I felt bone tired, years of going finally catching up to me. I’d completely changed my lifestyle a few years ago to be more healthy. I started eating better and working out and lost about 35 pounds. To prepare for our wedding, Chris and I implemented healthy eating and tried to exercise regularly. I lost another 10-15 pounds, reaching my lowest weight in my adult life. 

After the honeymoon, though, we just got lax. I think we were so tired of limiting ourselves and being so strict that we indulged. A lot. There were no rules actually. It was hard to get into a rhythm, too. We wanted to eat healthy and we wanted to stay active, but for some reason, it was so hard to get into a routine now that we were living together, in a new place. We were trying to adjust and enjoy and still find time for everything.

In the midst of it all, I still struggled. When I started dating Chris, I realized I had digestion issues. “Oh, I’m not supposed to feel terrible every time I eat? That doesn’t happen to everyone?” No, he assured me. Cool. 

I had pain more often than not. It was just something I was used to by that point, but it wasn’t pleasant. There were times it wasn’t as bad. Sometimes I didn’t hurt at all. And it didn’t seem to make sense. I thought it was dairy. I thought it was gluten. Maybe processed foods. But the discomfort was never consistent.

I was frustrated that we couldn’t get our diets in order and that I couldn’t seem to get a handle on what was causing me so much discomfort. 

On top of the frustration, the depression and anxiety was getting worse. I seemed to be having a breakdown or an episode every week. It’s like I kept sinking deeper and deeper. So much that Chris finally gently suggested I should maybe see someone. 

Chris also mentioned the PCOS, that all of these things were possibly connected. I was desperate for answers and could hardly wait to talk to my doctor. I knew my yearly appointment was coming up, so I started holding out hope for that day. 

 

How the Doctor Did(n't) Help Me

In the meantime, I felt like I was going crazy. My moods were swinging so often that I felt dizzy trying to keep up. I’d go through an entire week in a fog, unable to remember details. I wanted to understand. I wanted to talk about the PCOS and if the depression I’d been battling was because of it. I wanted to know what solutions there were for me. 

I needed a solution.

After my appointment got rescheduled twice, I saw my doctor. Told her about my moods. Asked her if digestion issues could be a side effect of the PCOS. She told me yes, because of the insulin resistance. 

It was the first time I’d ever heard her use that term.

The only reason I’d ever even heard that term was because of Chris and some research on my own. 

So yes, it was possible that my issues were being caused by it, but that was as far as the conversation went. No solutions, no advice. 

When I explained my moods, she asked me some questions. What was it like? Had my diet and exercise changed? How often did it happen? She told me the birth control I was on was the one the FDA recommended for mood stabilization. She recommended a counselor before medication or switching my birth control. I agreed.

In the meantime, I finally started sharing all of this with a friend and found out she was going through some similar struggles. She was battling some things in her body and not getting easy answers. She finally went to her doctor to find the root cause and he actually recommended a nutritionist. 

When we talked, she suggested that maybe going to one would give me some answers on my issues.

I wasn’t sure. I felt that so many people were into these “holistic doctors” but who knows if they actually know what they’re talking about?

But my friend told me she’d made some dietary changes and some of her issues, not all, were improving.

So I started researching more. I wanted to understand what was actually going on in my body. I was shocked at what I found.

 

What the Doctor Didn't Tell Me

Guess what? This thing they call Polycystic Ovarian Syndrome has very little to do with the fact that there are cysts on my ovaries. It’s a symptom of the problem. There’s actually not enough research done on PCOS to even have conclusive answers. 

What they know is that PCOS is caused by a hormonal imbalance which more than likely results in less periods and halted ovulation. It generally causes numerous cysts to form on the ovaries, but not all the time or even in all women.  

For me, I’ve discovered that, more than likely, Insulin Resistance is causing my PCOS. My body is resistant to insulin, which means it tries to produce more insulin to process the sugar. The excess insulin causes an excess of androgen hormones. The extra hormones create all the symptoms that make up PCOS (missed periods/no ovulation, weight gain, infertility, depression, fatigue, cysts, excessive hair growth and loss).  

I’ve struggled with acne and maintaining my weight for years. More recently I’ve had severe mood swings and depression. Years ago, I remember complaining daily to my sister how I felt tired all the time and I felt like I had chronic fatigue. 

An excess of cortisol, stress hormones, also contributes to the PCOS cycle. Surprisingly enough, this limits the kinds of exercise I should be doing.

PCOS has also been linked to gut health, although I’m not sure enough research has been done to prove it. Some say that IBS (irritable bowel syndrome) can actually cause PCOS. 

PCOS seems so simple and yet so annoyingly complicated. 

 

My Journey

It’s been easy to blame a lot on the PCOS. Many days I just don’t feel good. Whether that is because of mood swings, bad gut health, or because I’m so fatigued that I lack the energy to do anything, it’s easy to use it as an excuse. And honestly, it’s been hard. Mostly because I expect to act like an average human being and be able to function properly. But it’s not that easy.

If I get a little less sleep than I should or if I eat any number of things that trigger the PCOS cycle, I can get derailed, sometimes for days. Even high levels of stress hormones trigger the PCOS cycle. If I’m not intentional and completely aware of my actions, things tend to go tilt. 

So it’s been hard to really pour myself into anything other than what is absolutely necessary. It seems I’ve been in a long season of getting up just in time to go to work, coming home to take care of any necessary chores (and even those get backed up), and then going to bed to do it all over again. Working out and losing weight really help with PCOS, but when I’m tired all of the time, it’s hard to find enough energy. 

There have been times, when in a downward spiral of panic and depression, that things get so confusing. I feel everything so strongly and I’ve asked Chris through the tears, “Do I really feel these things or is this just the PCOS talking?” Sometimes I don’t know what is real and not real, and that seems like such a silly thing to say.

Obviously, I don’t want to make it sound like I have it terribly bad, because I know others have it much worse than me. This has just been my experience. 

I keep thinking it is silly of my to share this with you. I’m doing that thing where you share your struggle before it’s over and wrapped up with a shiny bow. But it’s PCOS Awareness Month and one in 10 women actually have PCOS but most of them don’t know it. So I thought it was time to talk about it. If I can help one woman down the path toward answers, then it will have been worth it.

 

The Help I Needed

For me, I got tired of the not having real answers from my doctor. I get it, there’s not enough research done on it. But my friend really inspired me so I started researching PCOS and nutrition. I found a blog called The PCOS Nutritionist and it was so helpful. Clare, the nutritionist, does what she calls the PCOS Protocol, which is a 16-week program helping women to reverse their symptoms. I signed up immediately.

I’m done with the 16 weeks and I’ve learned a lot, but I’ll be honest, I’m still in the middle of the journey. It has been so hard trying to implement all of the changes I need to make. It’s been difficult to accept that this is an issue I could have forever and that I need to make changes that I don’t necessarily want to make. No gluten, no sugar, intermittent fasting? And that's just the start.

Can I also just say that I've been able to be diligent and disciplined before, but because I wanted to. It was my idea. Now that these health changes seem to be required for functional living, it's so much harder. Why is that?

About a year ago, I wrote about my mission: to be boundless and whole. It had to do with wellness in all areas of my life. I haven’t exactly succeeded at this, I'll admit. One of my goals for Year 30 was to stop letting my health derail me. I owe it to myself to try, to dedicate myself to the process. Maybe me telling you this is for accountability, of sorts.

This my attempt to pep talk myself into action. I keep telling Chris over and over that I don’t feel like myself. And don’t want that to be my story anymore. I don’t want to look in the mirror and not recognize myself. I don’t want to feel disconnected from myself, like I’m watching my life from a distance. I don’t want to keep relying on medicine that’s not actually making me feel better. 

I want to kick this thing in the butt and have a freaking dance party on its ashes.

So babes, here’s to healthy. 

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If you’ve had similar experiences or this sounds familiar to you, I’m leave some links for you to do some research on your own. If you think this could be affecting you, please see a doctor! I waited way too long. If you, too, struggle with PCOS, give me a shout. If you've had success, please share. I’ll also leave some of my favorite resources for you to check out.

 

 

Helpful Articles:

PCOS Awareness Association: What is PCOS?

PCOS Awareness Association: PCOS Symptoms 

The PCOS Nutritionist: 7 Things Every Woman With PCOS Must Know

The PCOS Nutritionist: Is Your IBS Causing Your PCOS?

The PCOS Nutritionist: 6 Reasons Why Your Doctor Can't Help Reverse Your PCOS

 

Favorite Resources:

The PCOS Nutritionist

The PCOS Protocol 

 

These books were graciously gifted to me by a friend:

PCOS: The Dietitian's Guide

The PCOS Workbook: Your Guide to Complete Physical and Emotional Health

The PCOS Nutrition Center Cookbook: 100 Easy and Delicious Whole Food Recipes to Beat PCOS