Before I dive in to my experience living with PCOS, I want to mention that the information in the post are my personal experiences, and not intended to be viewed as medical advice or diagnoses. I’m not a medical professional (I only play one on TV), but chose to share the experiences I’ve gone through and the lessons I learned in hopes it can help women make informed decisions about their bodies and wellbeing when dealing with PCOS.
“You are too skinny to have PCOS.”
That’s an actual line I heard from one of my many doctors I turned to during my journey with PCOS. Nevermind the fact that I used to be 200 pounds, I was now too skinny to have PCOS.
According to the womenshealth.gov website, 1 in 10 women of childbearing age is affected by PCOS. PCOS, which stands for Polycystic Ovarian Syndrome, is an imbalance of reproductive hormones that can cause a cascade of symptoms in the body. What’s crazy, is less than half of those 1 in 10 women will receive a proper diagnosis from their doctor.
That’s where I found myself for many years.
My PCOS Story
My PCOS story started at the ripe old age of 9. That time when mom makes your “monthly visitor” seem like a gift, turned bad real quick when my periods started making me violently ill every month. I’m talking vomiting for 24 hours, not being able to move, wanting to go to the hospital type of situation monthly. I would miss an entire week of school it reached that level of severity. Yeay being a woman!
By the time I started seventh grade, my mom had decided it was time to take me in to get checked out. Like many other girls who find themselves in this situation, I was placed on birth control pills. Now when you are 14 years old and this is the only thing that can make you feel like a human each month, I didn’t argue. And it worked like a charm. I popped that little yellow pill for the first three weeks, then the little white ones and I was good to go.
Battling with Stress and Anxiety
Everything was great. Until I graduated high school.
A few months after I graduated high school I started suffering from severe chest pains and uncontrollable crying spells. I had absolutely no idea what was going on. I decided to go visit the urgent care, when they told me that I was dealing with a chest cold. They gave me antibiotics and sent me on my merry way. When that didn’t work, my mom and I paid a visit to my primary care physician.
My primary doctor did an EKG on my heart, and also had me fill out this lengthy questionnaire about my moods over the past few months. After an hour or so, she came back and diagnosed me with anxiety and put me on Lexapro. I was so happy to finally have an answer for what was going on, but now I was on Lexapro for the anxiety and birth control pills for my painful periods. As time would pass, I started wondering if this was a bit much.
I went on taking the Lexapro and birth control pills for years. Before I started college, I started having full-blown panic attacks. I got to the point where I actually stayed in a behavioral center for a few days because I honestly couldn’t function on a day-to-day basis. I was givin all types of meds to calm me down (Xanax actually makes my panic worse btw). It was after this experience that I became determined to figure out what was actually going on. At this time I also gained a lot of weight – I reached 199 pounds.
Coming off of Birth Control
Now I’m in my late twenties, and I decide I want to come off of birth control. I’m not concerned at the time with pregnancy, and really started to wonder what it was doing to my body. As I would find out many years later, birth control pills can throw off the balance of healthy bacteria in your gut and can possibly contribute to leaky gut.
*As a side note, I am not in any way against a woman’s right to choose whatever works for her and her body. The options are out there, and I believe a woman should have the power to make those decisions and I support that 100 percent. I’m only sharing my experience with it to help women who are looking for options to make an informed decision.
When I came off of birth control, the painful periods returned almost immediately. At this time I had a family member recommend I get my hormone levels checked.
What came back was pretty interesting. I was about mid-cycle when I got the blood test, and my progesterone levels were in the gutter. At this point in your cycle your progesterone level is supposed to rise to support a possible pregnancy, mine was MIA. This is a sign that ovulation wasn’t occurring.
Natural Progesterone Cream
I started working with a local naturopath, who suggested using natural progesterone cream on days 14 – 25 of my cycle to boost up my levels. For the first few months of using it I didn’t notice much of a difference. But after that third month, things started to change.
My periods started to not be as painful. They also got shorter.
One of the things I also noticed after some time using the natural progesterone cream, I was slowly able to start weaning myself off of Lexapro. My moods started to even out, and I wasn’t as anxious as I was before (I had just moved out for the first time on my own AND got married so the fact that I had no anxiety was CRAZY).
The one thing I can recommend though that I didn’t do is to work with a naturopathic doctor or holistically trained doctor when using natural progesterone cream. It’s supposed to be used as a short-term boost, I used it unsupervised for a few years. I have not used it for about three years now, and have still maintained normal cycles.
It Finally Has a Name
So fast forward to 33. My menstrual cycles are still operating as normal. My anxiety for the most part is under control. But why do I still feel so crappy?
I still suffered from fatigue, digestive issues, weight gain, thinning hair and a number of other weird hormonal symptoms. I decided it was finally time to go to an integrative doctor. She ordered a boatload of tests including a blood and stool test as well as n allergy test. Let me tell you, financially those tests aren’t cheap, but the information that comes from it with the right doctor can tell you so much.
The test reveled that in addition to PCOS, I was also in the beginning stages of Hashimoto’s Disease. I’ve learned that it’s actually very common for women with PCOS to develop autoimmune issues. A few years earlier, the same doctor who said I was too skinny to have PCOS also tested my ANA and it always came back positive. This basically tests the antibodies in your bloodstream and can signal an autoimmune issue. She said because I didn’t test positive for lupus that she didn’t feel we needed to look further.
My current doctor said that was probably the Hashimoto’s that caused it to test positive.
The stool test also showed I was dealing with leaky gut, and was able to find an infection in my gut that my doctor said can be caused by leaky gut.
So here I am, armed with all of this information – how do I keep PCOS and everything else under control?
Tips for Keeping PCOS Under Control
I can’t even begin to tell you how important this is for keeping PCOS under control. Unfortunately we are a little more sensitive to the impact of stress, so finding stress management techniques that work for you are so important.
- Daily Meditation – I downloaded the Calm up and do the body scan meditation twice a day for 10 – 15 minutes. It also has great meditations for any situation.
- Yoga – it’s not only great for the mind but also for connecting with other people.
- Maintaining a Healthy Work/Life Balance – if you’re in a job that calls/asks you to work long weekends, doesn’t respect your personal time or your mental health – it’s time to start looking somewhere else. I worked in a toxic work environment for years and it really impacted my health and wellbeing.
- Build a Support Circle – Find people who you trust and can turn to during difficult times. Even if this is just a therapist or life coach, find someone you can open up to.
- Sticking up for Yourself – This one was huge for me. I don’t like to be in confrontations so a lot of people walked all over me. Once I started making my boundaries known, the stress levels decreased.
- Exercise – Move a little each day, even if it’s a short walk around the block.
- Cutting out dairy, gluten and soy – all of these foods can have a negative impact on your hormones.
- Watch your sugar intake – if there’s one thing woman with PCOS must do its watch the sugar. Insulin fluctuations with PCOS can cause a lot of unwanted symptoms. With diabetes running in my family, I chose lower sugar options if I am going to eat anything sweet. The only fruit I eat consistently is blueberries. It’s also important to keep meals consistent to keep blood sugar in balance, before the hangry monster eats your boyfriend or husband because it was so hungry. Keep high protein snacks like nuts or jerky on hand.
- Carbs – carbs are not the enemy! But be mindful of the types of carbs you are consuming and when. Save the more carb heavy meals for the morning, and opt for slower digesting carbs like sweet potatoes and plantains. Avoid carb heavy pastas (you can make these turkey meatball zoodles instead!), breads, and other starchy meals.
- I encourage you to work with your doctor to find natural methods of hormone balancing that works for you. Maca helps to naturally balance the levels of progesterone to estrogen. Wild yam is also the main ingredient in the natural progesterone cream I use. Before beginning any supplement routine, consult with your doctor first.
- Toss out the toxic skincare – what you put on your skin can impact your hormones just as much as what you put in your body. Some of my favorite non toxic skin care lines include CocoKind and Frank & Whit.
- Also toss out the plastic – plastic contain hormone disrupting BPA. Look for stainless steel water bottles and water dispensers, or put a reverse osmosis unit in your kitchen.
Moving Forward with PCOS
Living with PCOS can seem overwhelming at first. If there’s one piece of advice I can give to anyone starting out on a PCOS journey is to be your own health advocate. The information regarding PCOS in the healthcare professional is unfortunately quite scarce. And many women have stories similar to mine, the doctor treats the symptoms and not the root cause.
Once I took my health back in to my own hands, it allowed me to have a more in-depth and open conversation with my doctor. The more I learned about PCOS, the more clear everything started to become as to why I had been feeling this way for so many years. I still deal with aggravating PCOS symptoms every now and then, they mostly appear when I neglect my self-care tips from earlier in this post.
You don’t have to be defined by your PCOS, nor do you have to be a prisoner of it. Connect with the community of countless other woman who are also dealing with PCOS. There is so much strength in community.
I hope my story helps and empowers you on your own journey with PCOS and helped provide you with some insight on questions you may have had.