Its been 3 months since I was diagnosed with Polycystic Ovarian Syndrome (PCOS). I've waited and hesitated to talk a whole lot about it because of the complexity of this syndrome and because of the sheer fact that I am learning, myself, how to properly manage PCOS.....and still learning about myself, my body, and how it can best function with PCOS.
You see, the problem is is that there (seemingly) isn't a whole lot of awareness and understanding out there about PCOS - which is odd considering how many people are affected by it. When I was diagnosed, my doctor (who I respect very much) told me to try and manage it with my diet first....to eat 1200 calories a day and do low carb/ketogenic. She explained to me how PCOS worked, but I realized only later that there was a whole lot more to learn and understand than what was recited to me that day in the doctors office.
Before I begin, I want to preface this by saying that I am NOT a medical professional. I am not a nutritionist or someone with specialized knowledge about PCOS nor someone who has the ability to treat PCOS. I am merely someone who has PCOS and who is about to share with you my experiences thus far with PCOS and what I have learned thus far. This post is in no way meant to treat or diagnose anyone with PCOS. If you feel like you may have PCOS or are struggling to manage your PCOS, please talk with your primary care provider.
Okay...phew....legalities out of the way.... :)
How I was diagnosed with PCOS....
I had honestly never really heard a whole heck of a lot about PCOS until I started my weight loss journey in January 2013. I followed some people on Instagram who have it and at the time, didnt understand a whole lot about it. I just knew it made it harder for them to lose weight....and many of them had bad acne like me....they also had excess hair growth and had issues with fertility. Face value, thats all I knew. Thats as far as I went to understanding it. Then, around November 2013, I started having more pelvic pain than normal....more issues with that "time of the month". I was working out harder and harder and eating cleaner and cleaner yet I was putting weight back on that I had just spent the first part of the year losing. So, I went to my doctor at the time and they began running tests and doing ultra sounds.....and so from November- about February 2014 I was being looked at for PCOS, endometriosis, enlarged thyroid (and other thryoid disorders). Then law school graduation happened....I moved back home to New Mexico and had to find a new primary care doc/OBGYN. Dave's kids arrived for the summer and I simultaneously was studying for the bar exam. Needless to say, I put my scheduling my new doctors appointments on the back burner during that time. And while my symptoms hadn't worsened, they hadn't gotten any better. I figured it could wait until after things settled down a bit. I continued to focus on clean eating and exercise per usual.
The summer and the bar exam came and went. The first week of September came and my grandmother passed away.....4 days later I found out I failed the bar exam. September was a hard month, but I threw myself into my Beachbody business and tried to keep myself busy with that and working out. I was going to the gym with friends while still doing my at home Beachbody workouts. I was eating clean and doing all the things I thought I was supposed to do. But I still couldnt get the scale to budge. Then October 2014 rolled around and I had quite a few doctors appointments set up ..... all to look over my tests and ultrasounds from back in Arizona and to continue trying to figure out what my issues were because I was struggling with my weight and acne and couldnt understand why my body just seemed to not want to cooperate. The day of my first appointments, I ran into issues with my health insurance....and so, my appointments were put on hold yet again. And once again I continued to focus on clean eating and exercise.
It wasn't until the end of January/very beginning of February 2015 that everything came to a head. After 42 consecutive days of "that time of the month," and finally landing an appointment with my new primary care doc, I got in to be seen (extra long or even multiple periods a month have been the norm for me since I was 11) . A few appointments, trip to the ER and OB Triage, a procedure and several follow up appointments later (all within a 2 week period), my docs had come up with two things:
1) I had miscarried
2) I have Polycystic Ovarian Syndrome
At this point, I was 2-3 weeks out from taking the February Bar Exam and I was so overwhelmed with that news that I tried not to think about it or process it until after the bar exam. I had already failed it once before and I couldn't bear the thought of failing again. I was determined to not let any of this news prevent me from performing on that exam. So, what did I do? I focused on clean eating and exercise and studying. After all, my doctor only told me a brief rundown of what PCOS is and to try and manage it with a 1200 calorie/day low carb/ketogenic diet. So, I started to try that and focused on the bar exam.
How I am managing/dealing with my PCOS...
I'm happy to say that I passed the bar exam and am now a licensed attorney (woohoo!). After the bar exam, I figured out how to modify my 21 Day Fix Extreme meal plan to be ketogenic friendly - as to accommodate for my PCOS (see this post to see just how I do this). I lost nearly 20 pounds before my trip to Cancun in April. Since Cancun, I've put about 8 of those pounds back on and have been openly struggling with things. Lets just preface this by saying that I have good days and bad days....and right now I seem to be dealing with the emotional and perhaps mental aspects that come with PCOS. I'm at a point where I'm finally starting to truly process it all and, for me, that brings up emotions and has been difficult for me to process despite doing my best every day to eat clean and exercise. Boy, this really is a journey!
You see, the scale hasn't been moving much in the last year....and I know that. I'm the first one to admit it. I'm the first one to admit when I've fallen off the wagon or when I know I could improve. My clean eating has only gotten better and better since I started my weight loss journey in 2013...and I workout more and harder. And yet I still vacillate between the same 10-20 pounds. Do I still have cheat meals and times when my meal plan could use some dialing in? Absolutely. I'm only human. But, generally speaking, my eating and exercise habits have only continued to improve over the last 2 years. Slowly...very slowly it seems...but surely.
Its frustrating. If I knew how to change it and stop vacillating between the same 10-20 pounds and can just lose the weight, I would do it. Id do it in a heart beat. All I know is what I've been told and what I've researched: manage your PCOS through clean eating and exercise....add in supplements and medications at your doctors discretion (although mine doesn't want me on any just yet).
Perhaps what I find really frustrating is knowing how hard I'm working and how badly I want to lose all my excess weight and be at my goal. Perhaps whats frustrating is that I compare (even though I shouldnt) my journey with other peoples...and usually its folks who don't have PCOS...and I think to myself "why can't I just lose weight like that? They've been doing this a shorter amount of time and have lost more - why can't I do that?" Perhaps whats hard for me, too, is knowing that there are so many of you reading and watching my posts....and while I have had an outpour of support (THANK YOU), there are daily negative and mean spirited comments about me, my body, my lack of progress, etc. on my social media and no matter how thick of skin you have (which I don't really have a thick skin anyways LOL - working on it!), comments like that play with your (my) already sensitive psyche. (Again, though, I want to emphasize the incredible positivity and support I've received because that's been the majority of what I've received from you all, so thank you!)
I want more than anything to see more progress...I don't want to "let people down" because I'm not seeing progress like people think I should - and even how I wish or think maybe I should. I oddly find it sometimes (okay, oftentimes) embarrassing and humiliating that I try so hard and don't see much progress . I hate feeling like I dont have much to show for it, yet also feeling like I still have to answer to people about my lack of progress because, after all, I am a health and fitness coach and I have a larger following on social media. Its like I feel this overwhelming pressure to perform and show progress - especially since I have such a large following on Instagram and I know people look to me for motivation and advice - yet, I cant produce that progress like I'd like. And it frustrates me and embarrasses me and makes me feel inadequate half the time. Perhaps whats hard for me, too, is that those who don't have PCOS or know someone personally affected by it have no idea what its like and so they oftentimes assume that you are using PCOS as an excuse for being overweight or seeing a lack of progress.
And heres the thing:
Its not an excuse. PCOS isn't an excuse, its not a death sentence - your life is not over if you have PCOS. I get it - and I talk about that on the regular on my Instagram. But it doesn't make dealing with it, on the daily, any easier per se. Whats also difficult is the judgment you can even get from those who have PCOS themselves....this assumption some have that if you don't have certain symptoms, you must not have PCOS as bad...its like some sick pissing contest of "who can PCOS harder than me."....Its, like, "Oh, well you havent had to go through IVF/fertility treatments, you havent been trying to have children and lost them...you dont have hair growth problems...you havent known for that long and so you cant understand the struggles I've been through for X number of years...." and so on an so forth. Ive even seen folks who have had PCOS for awhile get irritated with those who are newly diagnosed because they find it annoying to talk about PCOS and all its issues - yet they fail to realize that they have had TIME to process it all and understand it and work with it. Newly diagnosed folks havent had that time or experience. Most of the time, they are just learning about with it even is and they are just relieved that they finally have a diagnosis for whats been ailing them for so long. They are full of emotions and questions.
Granted, the latter, less favorable experiences have only happened on several occasions that I can count on two hands, but its still something I've experienced in the last couple months. And if I've experienced these things, I'm sure at least one of you has experienced these things as well. And they are hard to talk about. I never want to seem negative or like I blame my PCOS for anything, but there ARE some things that come with PCOS that you aren't necessarily prepared for and have a hard time dealing with and talking about. And for some, maybe you don't. Maybe this isnt a big deal to you or you feel like its easy to deal with....but for me, its not. Its something that I, personally, need time to work through and process.
And the issues with PCOS dont just stop there...at least for me they dont....
Perhaps the MOST frustrating things with PCOS are the dynamics that go on within yourself, with others, and within your relationships when you are newly diagnosed (and hey, maybe they are here to stay - I can't say since I'm only 3 months in). They are complicated . All I know is they are weird to me. They are frustrating, at times. What no one tells you about PCOS is its like an invisible disease of sorts. You don't look sick. You don't walk around with some physical manifestation that clearly identifies you as having PCOS. Generally, folks with PCOS are just overweight...with some acne/skin issues and some have excess hair growth. Thats all that you really see on the outside usually...for all intents and purposes, folks with PCOS look pretty normal...your average American...your average person. And because of this, I believe its easy for people to just assume you are lazy...that you eat like crap...that you don't workout or that you don't care about the way you look. But more often than not, that couldnt be farther from the truth. Sure, are there some folks that use PCOS as an excuse....are there some folks who refuse to eat properly for their PCOS and follow doctors orders and then wonder why their symptoms havent improved and theyve continued to gain weight? Sure. Of course. But I think that its THIS struggle...within yourself and with the way people may perceive you that makes PCOS so tough. Its this expectation that you are supposed to look a certain way, act a certain way, eat a certain way, lose weight a certain way and when you fall short, you feel defeated and frustrated. With PCOS, every woman...every body is different. As so too will your journey be. And thats hard...its hard because many people don't understand this. They dont understand how PCOS works and the inner dialogue and frustrations you have with yourself and your body. They take you for face value and assume. But thats human nature. And so that is also something that us folks with PCOS need to learn to use to our advantage...turn a negative into a positive....find strength and courage in those moments when we are struggling.
But me? Where am I at with it all?
PCOS is not an excuse. Its something I'm learning to manage better and better with each passing day. I am struggling, at the moment, with feeling a little blue, frustrated, as I've been saying: "I'm just in the funkiest of funks." I've been struggling with having, like, no "drive" in the bedroom (if you catch my drift)...and whether thats a product of my Mirena IUD I had inserted in Feb to regulate my PCOS and use for BC or if its due to some acute depression I'm dealing with, I'm not sure. But...theres that. I have also been dealing with increased cravings and lack of motivation to workout, but I do my very best to not give in to temptation. Some days, I cave. What can I say, I'm human. But regardless of all of this, I do not blame PCOS for my weight issues, but I now recognize and have a name for a syndrome that I have that makes weight loss that much harder. I now know what I can do to help my symptoms and make weight loss more feasible. I choose to follow my doctors orders. I focus on clean eating (no dairy, grains, starches, added sugar...low carb/ketogenic...lots of leafy, fibrous greens, lean protein, and healthy fats) and I workout 5-6 times a week doing both weight training (Body Beast program) and cardio. There is a broad spectrum of folks with PCOS and what/how they deal with their PCOS.
Which leads me to another thing.....
What led up to me being tested for and diagnosed with PCOS......
PCOS looks different on every woman. PCOS is a syndrome, meaning, an individual can present varying symptoms commonly associated with the syndrome, but need not all the symptoms to be classified as having that syndrome. There are some general indicators that are more common among women with PCOS, but not every woman has all of them. You can have some of the same as others, you can have a minority of symptoms and still have PCOS. Thats just it - its so different for every woman. It also takes, on average, 7 years for a woman to be diagnosed with PCOS. 7 years! But that, unfortunately makes so much sense to me and here is why:
When I started having weight issues in college, I very quickly put on well over 50 pounds. I went from a fit, athletic collegiate cheerleader to someone who was suffering from acute PTSD, depression, and anxiety and had ballooned up in several months time after I landed myself in trouble with the law and was arrested for DUI (see this post about it OR watch this video about my story). At the time, doctors thought that it had to do with what I was going through personally....the things that had caused my acute PTSD, depression, and anxiety. Granted, I had always (since age 11 when I started "that time of the month") had issues with irregular periods (2-3 heavy/month), severe pelvic pain, and cysts on my ovaries. It got worse in college, but considering the acute PTSD, depression, and anxiety, those other female issues just kinda went on the back burner. I was told those feminine issues would resolve themselves as I got older and had children. So, we attributed my weight gain to my mental and emotional issues I was having at the time. On top of that, my diet progressively got worse....to the point where I was living off of taco bell and pizza hut on the regular. I ate in excess...I ate to make myself "feel" better. I ate because I was bored. I ate because I was happy. I ate because I was hungry. I....just...ate. And I ate all the carbs and cheese and sugar in the land. Food was my medication. And so, you can see why my doctors didn't necessarily jump on the PCOS diagnosis....why it took so long to figure out a diagnosis. Its hard to figure out a definitive diagnosis when youre not the best patient....when youre eating like sh%t and have other issues like PTSD/depression/and anxiety that you are being medicated and treated for - all things known to cause weight gain and other issues.
It wasn't until I cleaned up my diet and started trying to lead a healthy and fit lifestyle back in January 2013 that I really could parse out things more...that I could identify symptomology, keep record of what I was eating and how it made me feel. I could track what I was doing, my progress, and how I was feeling during everything. I became more in tune with myself and my body...and it made it easier for my doctors to have written record of what I was doing and eating....they could more clearly see what was going on. And even then - after I had cleaned up my diet for a couple years and was working out consistently- my doctors werent 100% convinced I had PCOS (until Feb 2015 after 42 days of bleeding/miscarriage) because I am not morbidly obese, have excess facial hair, or have pre-diabetes. I have some weight to lose and carry my weight centrally like most people with PCOS, but Im not morbidly obese. I don't have excess facial hair/hair in other places....instead I have hair loss issues. I have cystic acne and painful ovarian cysts like most people with PCOS, but I don't have prediabetes. So, as you can see, diagnosing me (and others) with PCOS is complicated. Its not some cut and dry test that will tell you if you have PCOS. There are ultrasounds, various blood/hormone tests....theres a spectrum of things that are used to diagnose someone with PCOS. But, its not cut and dry. I wish it was....but its not. Thats just the reality of PCOS.
So, what exactly IS PCOS?
According to www.pcoschallenge.org, PCOS is a genetic, hormonal, metabolic, and reproductive disorder that affects 1 in 10 women. 10% of women of childbearing age have PCOS and a whopping 50% of women who have PCOS go undiagnosed. 50% of people with PCOS will develop type 2 diabetes and all women with PCOS are 3 times more likely to develop endometrial cancer. 70% of women dealing with infertility issues suffer from PCOS.
Further, according to the PCOS Foundation, "Since PCOS cannot be diagnosed with one test alone and symptoms vary from woman to woman, PCOS has been known as the “Silent Killer”. Early diagnosis of PCOS is important as it has been linked to an increased risk for developing several medical risks including insulin resistance, type 2 diabetes, high cholesterol, high blood pressure, and heart disease. Many women may experience weight gain or obesity, yet there are others who may be very lean. Multiple cysts on ovaries in a "string of pearls” pattern is also an indicator for PCOS. In addition, this hormonal imbalance can cause Insulin Resistance, which is also a prime indicator that you may have PCOS. Women suffering from PCOS may experience high testosterone levels, which cause other signs and symptoms such as Hirsutism (excessive hair growth), male pattern baldness and acne. This high level of testosterone can also prevent the ovaries from releasing an egg each month."
"Researchers also think insulin may be linked to PCOS. Insulin is a hormone that controls the change of sugar, starches, and other food into energy for the body to use or store. Many women with PCOS have too much insulin in their bodies because they have problems using it. Excess insulin appears to increase production of androgen. High androgen levels can lead to: acne, excessive hair growth, weight gain, and problems with ovulation." (www.womenshealth.gov). The cause of PCOS isn't definitively known... And because much of the symptomology caused by PCOS is due to hormonal imbalances, so too can your symptoms fluctuate and change ...because, think about it: hormones are always changing and fluctuating in our bodies. As women, our hormones change and fluctuate monthly with that time of the month and continue to fluctuate due to our PCOS. So, its no wonder that your PCOS might seem to "flare up" more times than others....why you might be doing well with your weight loss and managing your PCOS but then have a period(s) where youre struggling more. Like I said, PCOS is a complicated syndrome. Understanding it and managing it and even diagnosing it is like peeling an onion.....you have to peel away all the layers in order to figure it all out.
So, what now?
First things first, if you think you have PCOS, please go see your primary care doc. If you have PCOS and are struggling with it, again - please go see your primary care doc. They are the best and most equipped with treating YOUR PCOS - because remember, PCOS is different for each woman. There are dietary changes that you can make (see above) and support groups you can join. If you feel like you want support and motivation on your weight loss journey, there are fitness challenges like the ones I host that are available to you ( youre always welcome to join one of my monthly fitness challenges!). But heres what it comes down to:
It comes down to you being proactive about your health. It comes down to you working WITH your doctors to properly manage this...and finding ones that work for you if you feel like the one you have isnt doing it for ya'. PCOS isnt curable, but its manageable. Its not a death sentence and it doesnt mean that you absolutely won't have children (there are lots of women with PCOS who are able to still have children. My sincere condolences to those who were unable to have children). You have to be willing to make the necessary changes in your lifestyle to help manage PCOS. There is no quick fix and PCOS isn't an excuse to throw your health and fitness out the window. You have to learn to understand (and be okay with) the fact that you will have a harder time losing weight than most. You have to be willing to keep pushing forward despite any seeming lack of progress. Because heres the thing: if you're like me, you might have started your health and fitness journey to lose weight. For most, its about the aesthetic appeal of losing weight that we seek.....but after awhile, the longer you are on a health and fitness journey you realize that its about so much more than just being thin and fit and in shape.....its about your health. Its about the long term. So, just know that with PCOS you have to focus on long term health rather than quick fix, fast weight loss. Its about treating and trying the heal you on the inside so that you can lead a long, full, happy, and healthy life while managing your PCOS. You will have good days and bad days....good weeks and bad weeks....hell, maybe even good months/years and some bad ones. And you may go through periods of time where you go through the stages of grief with your PCOS....and thats okay too. It will all be okay. Just take it one day at a time. Take everything one meal, one workout, one day at a time. Start with making little changes in your diet and lifestyle by setting small daily goals. And lastly, try to never compare your journey with others (with PCOS and without)...and let go of the naysayers and the critics. Easier said than done, believe me...I know. I struggle with that too. But just know youre not alone. There are resources out there. There ARE doctors willing to help who understand PCOS. There are people out there (like myself) who are happy to be a listening ear and support you along your own journey. You can do this. You CAN manage this and lead a happy, healthy, fulfilled life with PCOS. But start today. Start make the necessary changes today. Love yourself enough to put your health first and start now. If I can do it, so can you <3