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The issue with how doctor's diagnose PCOS and why it can be detrimental to our physical and mental health

What It’s Like Being Diagnosed With PCOS

March 18, 2020 No Comments

Being Diagnosed With PCOS

This article uses affiliate links. To learn more, head over to my privacy policy.

If you haven’t realized from my other articles on PCOS, I have a hormonal disorder known as Polycystic Ovary Syndrome. It affects 1 in 10 women, has no cure, and looks different for every woman. In fact, it looks SO different that, what works for me, might not work for anyone else and vice versa.

I talk about PCOS in-depth is a past article. I discuss hormonal imbalance and natural remedies/supplements that prove helpful in relieving PCOS symptoms.

Want to know a little secret I haven’t shared with anyone except my fiance about being diagnosed with PCOS?

I was never properly diagnosed with PCOS. For about three years now, I have told everyone I have PCOS because, well, I do. I want to disclaim that I am not a medical professional and SHOULD have seen one to get correctly diagnosed. However, I didn’t.

Instead, I did research online and learned how they diagnose at a doctor’s office. From there, I had decided that I had PCOS and that I could help treat it naturally. Which, in fact, I did do! I got my period back after a year without one, I lowered my stress levels, and I stopped myself from continuing the upward slope of weight gain.

I knew for a fact that I had 2 out of the 3 symptoms they check for. The two symptoms being irregular periods and excessive hair growth. So, why didn’t I see a proper professional to get treated? ANXIETY. For one, I have had crippling anxiety since I was little of medical professionals.

I’ve had some not-so-great experiences in a doctor’s office, had a mother with anxiety, and also no form of health insurance. My anxiety doubled when I went on any social media platform and heard the horror stories from other women who had seen a professional about their hormonal imbalance.

Almost everyone has had a bad experience. This could be as simple as the doctor not doing any tests to throwing birth control at them without so much as looking up. Above all, almost all gynecologists/endocrinologists give out the same “lose weight” line to every single patient.

What I use to manage my PCOS symptoms and the issue with the way doctor's diagnose PCOS

All of this information was enough for me to realize I never wanted to see a medical professional, Even if it meant I would never be diagnosed with PCOS.

However, after trying desperately to lose weight, I had a mental breakdown. I had a heavy cry session as I felt utterly defeated physically and mentally. I was doing everything I was supposed to do (and have my entire life) but was somehow gaining weight! If you are a PCOScyster, than you can understand this frustration.

Being the fantastic man that he is, my fiance forced me to make an appointment with a professional. With actual health insurance, better stress levels, and more information on PCOS, I made the decision to call a professional.

So I called one of the ‘so-called’ best endocrinologists in the state who specialized in PCOS and scheduled an appointment. My anxiety had me running to the bathroom five times before making the call, but it was worth it if I could finally get diagnosed with PCOS.

As my fiance held my hand and came with me to the appointment, I felt nervous excitement to finally be appropriately diagnosed and treated. Now, before I talk about the meeting, let me explain my views on treating PCOS.

If you are diagnosed with PCOS, You don’t have to take a pill for the rest of your life.

I know that the common consensus is to take birth control, lose weight, and deal with consequences that come from certain pills the doctor recommends. I also know that there are natural ways to balance your hormones and, while it is a journey to get there, is one I was willing to start.

The reason I went to this particular office was that they had a dietician on their team that would allow me to find the right meal plan and lifestyle for me. I was sick of yo-yo diets, restricting my calories to the point of starving, and always having intense cravings.

Now, there are two ways you are typically diagnosed with PCOS. The best way is a hormonal blood test to see where your hormone levels are and what exactly you need to treat. The other is a check (usually done before the hormonal test) of 2/3 symptoms including:

  • irregular periods
  • hirsutism (male-patterned baldness or excessive hair growth)
  • cysts on the ovaries

The reason I skipped the gynecologist and went for someone who specialized in PCOS was that I wanted to skip the first test and go straight to a blood test. I wanted to see where my levels were and what type of foods and workouts I needed to help balance everything out.

Quick disclaimer: I am in no way shaming anyone for taking birth control or any medication that a doctor gives you. These medications are given because they are highly effective for women suffering from PCOS. 

My story is simply the journey I wanted to take and is not meant to tell you that you need to change your lifestyle around. If what you are doing is working, then great!!

Dealing with an eating disorder

I recently figured out that most of my life, I have been suffering from an eating disorder. This really isn’t a shock since SO many people do, but that doesn’t make it any less hard. As long as I can remember, I have restricted my calorie intake, sometimes to the point of not eating for a few days at a time.

Unfortunately, restricting calories with PCOS can sometimes make you gain weight. Therefore, not knowing what to do, I would limit more. By restricting and having horrendous cravings, I would end up binging.

Just the other day, I finally told my fiance that when he used to go on weekend trips, I would buy an enormous pile of ‘junk’ food and eat it all before he came back. I would make sure to eat every ounce of the collection of food and put all the trash in the dumpster so that he would never see it.

I’ve done this my entire life. While I’ve been telling women to love their bodies, I have been sitting behind the computer, judging the extra fat on my stomach.

I’d continuously check my Fitbit to see how many calories I had left in the day.

Starting the new year, I decided to change my life around, but not necessarily in a healthy way. I figured that I was gaining weight from those few binge days I had, so I made it my mission to lose weight.

My calories were restricted to 1300 or less, and I forced myself to burn at least 2300-2600 calories a day. Each Monday, I weighed myself, measured EVERYTHING, and wrote it down in a journal. I worked out for over an hour Monday through Friday, combining high-intensity cardio with resistance training.

After nine weeks, I had the first mental breakdown that caused me to make the endocrinologist appointment. While I felt stronger, nothing had changed. My weight hadn’t budged, and neither did the inches. It was the most defeating feeling I had ever felt. I was doing everything right, right?

The issue with being diagnosed with PCOS and finding the right professional for you and your needs

When I realized I had an eating disorder

After making the appointment, I started watching dietician’s and people with PCOS share their experiences on Youtube. A video popped up in my recommendations that changed my life. In the video, a dietician is talking about eating disorders and how she turned her life around with intuitive eating. She also had PCOS.

Everything she said made so much sense to me. In fact, it was so typical for me to restrict and binge that I had NO idea it was an eating disorder until she started talking about her experience. That is when I started looking at anything and everything about women who have recovered from eating disorders.

I looked at photos, blog posts, and videos, watching these women loving their bodies (curves and all). It was beautiful. I wanted to love my body too. In fact, I desperately wanted to eat ‘bad’ foods and not feel horrid guilt afterward that caused me to work out for an hour after.

So, I decided to stop the fad diets and start a journey of self-love.

I’m not sitting here saying that I love my body the way it is. It will take me a while to get to that point. However, I am accepting my body and saying out loud that I am recovering from an eating disorder. Trust me, this is a big step for someone who didn’t even know what she was doing was unhealthy.

Now back to my endocrinologist appointment and Being Diagnosed with PCOS

It started great. I filled out the information needed while my fiance sat next to me and gave me a pep talk. With a pounding heart, I waited for the nurse to call me back so that my life could change for the better.

The nurse finally called my name and escorted me to the little room. She checked a couple things and went to find the doctor. Sitting in nervous excitement, I was ready when the doctor came in for all the questions she was going to throw my way.

I answered everything honestly and openly. I explained in detail my symptoms and what I was doing to try and lose weight and balance my hormones out. The floodgates had opened, and my mind couldn’t keep up with my mouth.

I gave her my extreme workout regiment, the supplements I was taking, and all the symptoms that I still had.

The doctor let me know that I probably had PCOS and needed bloodwork done. I was ecstatic. I was finally being diagnosed with PCOS.

Then she told me that I needed to get on birth control and lose weight to heal my body. My heart fell. Was that all she was going to say to me? Lose weight and birth control. In fact, she recommended a medication that helps you lose weight (basically cocaine in a bottle). Let me preface by saying, I’m a mere 20 pounds over the ‘recommended’ weight for my body. I’m also not sure what my fat to muscle ratio is in this assessment either.

So I gave my previous explanation on what I was doing to lose weight. How I had restricted to less than 1300 calories and was burning more than 2300 calories every single day. I explained how I was working out an hour a day, eating low carbs, whole foods, and almost nothing processed hit my lips.

She told me I needed to try harder.

I prepared for this outcome and am fully aware that others have dealt with far worse. However, none of this can prepare you for the actual experience. To be so vulnerable and explain how you have an eating disorder mentality to try and lose weight, only to have someone say you need to try harder, is a horrible feeling.

You see, it is astonishing how many doctors do this (and worse) to women who are diagnosed with PCOS. For someone who spent 4+ years learning about the body and these types of disorders, you would think they would be more informed about how difficult it is to lose weight and how diets do not work. Not for normal women and especially not for women suffering from hormonal disorders.

Surprisingly enough, I am going to return to this terrible woman. I will check my hormonal levels, politely smile at her recommendations, request a copy of the tests, and leave her office and never return.

Then I am going to a dietician who believes in a healthy approach to my body, show her/him my results, and have a healthy relationship with food. With my hormones balancing, I may or may not shed a few pounds in the process. However, that is no longer my main goal.

Being diagnosed with PCOS and dealing with the symptoms

Because losing weight, while it might help with symptoms, is NOT the reason you have PCOS.

Stop telling women this regurgitated unhealthy information. Stop telling women that they need to restrict their calories and workout a ridiculous amount to be healthy and ‘pretty.’ And above all, do your job and STOP giving a one-size-fits-all approach to a hormonal disorder that looks as unique as each woman who has it.

To anyone who is suffering from PCOS and has a similar experience to this, you are not alone. My advice is to not stop until you find someone who will adequately treat your symptoms. Force your doctor to do a hormonal blood test and find someone who will read that and genuinely help you balance your hormones.

I want all of us one day to be able to love our bodies, have a great relationship with food, and be able to say we reversed our PCOS symptoms. It might be a journey, but I am ready to take that journey with all of you!

Do you have PCOS? Did you have issues being diagnosed with PCOS? If so, has any supplement or workout helped you manage your symptoms? Let me know in the comments below or over on my contact page.

I also want to know if you’d like me to keep a little journal/vlog diary of my journey to body positivity and naturally balancing my hormones. If you would like to see that, let me know in the comments below!

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**While I do research and find reliable information to share for each article, I am by no means a professional. Make sure to speak with a healthcare professional before changing anything in your health. Also, I do have affiliate links that, if used, will give me a small commission. While I do make a profit, I will never share a product/service that I do not 100% stand behind.

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