Beginning My Battle With PCOS
Updated: Oct 29, 2018
This is a very hard post for me to sit down and write. I have spent all week contemplating what to say, how to get my experience across, and if I should even write this in the first place. This is a sensitive piece that is MY experience being diagnosed with PCOS and how it has affected ME. PCOS effects different people in different ways, some more severe than others, our bodies are all beautifully different. My experience is vastly different than someone you may know who has the same condition so please do not judge me or them based on our symptoms and severity of the condition. This post will be a little longer, but I encourage you to read through, my experience could help you or someone you know!
This specific post will be about my symptoms, how I got diagnosed, and my feelings/fears pertaining to the diagnosis. I will be writing out a later post about my approach to naturally balance my hormones and hopefully moderate my symptoms with a diet and lifestyle change. I will be discussing this with my doctor during my next visit.
I want to start by briefly explaining what I know PCOS to be. Simply put; PCOS stands for Polycystic Ovarian Syndrome. This condition is a hormonal disorder that causes cysts in the ovaries, irregular or nonexistent periods, inability to ovulate and various other symptoms related to hormonal imbalances. This is an incurable condition, you can only attempt to treat the symptoms.
I was a sophomore in high school when my symptoms first started. I specifically remember having my first ovarian cyst like it was yesterday. I was sitting in 2nd period and stood up when the bell rang for the next class. When I stood I felt as though I got shot in the left side of my body. I had never experienced pain like this before. My teacher rushed me to the nurse and she has said I needed to go to the ER, my appendix had burst. I started bleeding, you know, down there and the ER nurse knew that it wasn't my appendix. She sent me for an ultrasound and it turned out to be ovarian cysts. I didn't truly understand what this was and I don't think my family did either. All I knew is that it hurt like hell. Eventually the pain subsided and I was fine. This repeated many many more times over the past 5 years. I frequently get cysts and am put out for a day when they rupture. It truly is unbearable. My doctors have been telling me for years that a lot of women have cysts and they are nothing to worry about (thanks doc!) just try not to move too much when I feel one so I don't rupture it. Other symptoms that started around this time was irregular period (about every other month), excessively sweating in my armpits, hair growth on my body, bad bloating, and my anxiety and depression started to set in.
Once I went off to college I really started eating well and working out. I have never been out of shape and just wanted to feel better and look better. During this time I switched my major from education to Exercise and Wellness because I knew this was the road God wanted me to take. This was when my depression and anxiety was at an all time high. I felt like I didn't even live in my head. I was constantly working out and doing all the right things I was taught in class, as well as cooking homemade foods and eating almost perfectly. However, for some reason (cue PCOS that I didn't even know existed) my body would not change. I couldn't lose weight or build muscle. I saw people around me who were getting awesome results and I just couldn't do it. I blamed myself and put myself into a really bad place mentally. During this time I still had the symptoms from high school, irregular periods, hair growth on my body, anxiety and depression, cysts, bloating, and now, unknown to me, I was having a hormonal imbalance that has inhibiting me to see any physical change in my body.
Fast forward to 1 year ago, this is when my symptoms truly took over my life. As most know I am a fitness and wellness specialist. I knew what I was doing, nutrition and exercise wise, was right yet nothing was getting tight and toned like I wanted. I had always felt like I carried a little more fat around my midsection but all of a sudden my body composition completely changed on me. In what seems like a blink of an eye I got extremely sick every time I ate and developed a gluten allergy as well as gained 2+ inches on my hips and stomach. This made absolutely no sense to me. I was lifting weights, eating healthy from home, tracking calories and macros, nothing that I had been doing for 2 years had changed. Yet, my body fat percentage increased by 8.5% and I felt disgusting and overwhelmingly embarrassed to be a fitness professional.
I am currently crying writing this section because I cant express how much I hated my body during the 6 months before I got diagnosed. I spent many nights crying, screaming at Austin about how stupid my body was, how it didn't make any sense, and would sit in my bedroom and have anxiety attacks before going to work or out with friends because I truly felt like a blob of fat. This completely ruined the progress I had made with my self worth and confidence. I blamed myself and honestly contemplated quitting my business because I felt unworthy of teaching others if I couldn't even take care of myself. It was a dark time for me that not many people know about.
During the time my body composition issue happened lots of other fantastic things also decided to start. I had developed a huge oil patch on my hair behind my right ear that grew around my entire head. It didn't matter what shampoos or conditioners I used, how much I washed my hair, or anything else I tried. When I got out of the shower and blow dried my hair, the left side of my head was smooth and silky while the back of my head and entire right side was sticky and looked wet. It was embarrassing and I hated going in public. This was also when the oil on my face started. I couldn't wear makeup because my skin on my nose, forehead, and chin was so oily it wouldn't stick to my face and would rub off on everything I touched. This also made me extremely embarrassed to go in public. I still did not know that anything was wrong with me, I just thought it was a normal problem and it was my fault.
Moving forward six months, the oil patch went away, and instead my hair started falling out. I know, you're thinking that I can't catch a break, well trust me I think the same thing. I have always had beautiful thick long hair. Well, I honestly feel as though I have lost half the hair on my head at this point. I brush my hair and 20 strands fall out, I shower and 50 strands fall out, I take my hair out of a ponytail and 20 strands fall out, it feels like every second more and more hair falls out and I'm going to be bald!!
Around the time my hair started thinning Austin mentioned that I had not had a period in awhile. They're always irregular but never this long without one. I looked at my period tracker app and it had been 5 months!! Austin lectured me about the health issues that could be wrong and I shrugged him off and was like "okay, chill, I'll make an appointment". So I did.
Now, here we are at present day (2 months ago really). I'm sitting in the doctors office waiting for the doctor and thinking that I'm fine. I'll just need to go on birth control and I'll be good. Well, that's not at all what happened. The doctor came in and started asking me all these questions about my period, cysts, hair loss, hair growth, oily skin, anger outbursts, anxiety, depression, weight, body composition, etc. I seriously thought she was crazy. "Why the hell is she asking me all these stupid questions, I just need birth control" I thought. After 20 questions she did a pelvic exam and said she wanted blood work and a vaginal ultrasound because she thought I had PCOS but needs to look at my hormone panel and ultrasound results to see if I can get diagnosed with it. I was so confused. I came back after getting my tests done and I can still see her face as she told me *sigh* "So sweetheart, it all lines up, your hormones support it and your ultra sound supports it. You also seem to check off every symptom box for PCOS which is pretty severe. You don't fit the typical woman who walks in here with PCOS but you definitely have it". I looked at her and almost started crying... I thought to myself... I want kids, I don't want my body to look like this, I thought I was fine, why did I wait so long, why did no doctor help me before when I had cysts? She explained to me what PCOS was, why I couldn't ovulate, why I had all these other symptoms, and all the risks I am now at high risk for...infertility, heart disease, ovarian cancer, obesity, diabetes, endometriosis, metabolic syndrome. I left the office crying and just kept thinking that I want kids and my whole life felt like it got ripped out from underneath me.
To this day, even after all my research, I spend every day thinking about my high risk for infertility and ovarian cancer. I get sent into an overwhelming downward spiral of panic. These two very common issues due to PCOS are the two that I am scared of the most. My entire relationship I imagined having Austin's children, us in the hospital together finding out the gender and having a party, us telling our parents and friends I am pregnant, us holding a newborn baby, I just always imagined having his kids and now it feels like I am never going to have what most women dream of. It's hard for me to wrap my head around but I feel like less of a woman. Now, let me say that I in NO WAY think that people who have to do IVF or adopt are any less of a woman. I am sure that other women have felt the same way I do right now which is this: my biological purpose as a woman is to birth babies and I might not be able to do this. It makes me feel embarrassed to tell other women because I feel inferior. Right now, I am truly broken-hearted because this is something I have wanted with Austin our entire relationship and definitely something we have talked frequently about leading up to our wedding. Now, it feels like a fairy tale.
Another huge struggle I am having is the perception on social media. As a trainer I am expected to be lean, fit, and sexy with poppin muscles and abs. I have been having a really hard time the last year or so with how I look due to the increase of fat in my stomach and hips. I get embarrassed to post videos and pictures of myself working out because I am afraid people are going to judge me for how my body looks. I have gotten really good at hiding my insecurities behind social media but in reality I feel awful about my body. It is very stressful teaching people for a living how to live healthy and get to their goals, yet I do even more than them and look chunky and out of shape. I am scared that people are judging me and talking about me behind my back constantly. I have a bad mental block with this and I hope that now this is out in the open, I can feel more comfortable because everything I have been blaming myself for is actually from PCOS. I feel somewhat freed and in a way this diagnosis has helped me realize how important taking care of yourself internally is. I am going to continue to take care of my body by working out, eating well, and hydrating.
I want everyone to know that you shouldn't judge a book by its cover. There is a lot more going on than you might not know.
To conclude, as I have stated before, my experience with PCOS could be vastly different than someone else's. Please, do not judge my condition against someone else's. My doctor has said that my symptoms are quite severe which is why we are trying to get them somewhat under control. PCOS has no cure, you can only try and control the symptoms. To do this, I am going to try and naturally balance my hormones working with my doctor. I will definitely be posting the way I am going about this after my next doctor visit in a few weeks. I was put on birth control to try and get me to have a period again but it has made my other symptoms more severe and has made my mood swings insane, so I am sure I will be stopping the birth control soon!
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