My Struggle with PCOS (and how it’s made me stronger)

Full disclosure: This is a blog post I never really thought I would share. It’s a real, honest, personal, and some might say explicit sharing of my journey with PCOS. If you don’t really want to know all my bidness, you may want to skip this one.

I try to keep this blog about my adventures in the DIY world – showing you how to make easy home decor, learn new hairstyles, and make yummy recipes. In the process of that, I let you into my real, personal life (like how I hate washing my hair and am really cheap).

When I do dive in to my personal life, I try to keep it as real as possible. I’ve written about how stress and exhaustion put a halt to my blog earlier this year, and how I was body shamed on Pinterest by a stranger. But something kept me from sharing the one thing that has most changed my life over the course of the last year.

Last September, I was diagnosed with PCOS and insulin resistance (which is caused by my PCOS). Although I thought this was a possibility before my diagnosis, my world was shaken into a million pieces.

How It All Started

Let me take you back a little in time. In my late teens, after a routine visit to my Dr., she asked if I had any concerns I wanted to discuss with her. I told her about how active I was (I worked out, lifted weights, and danced competitively throughout high school), how I ate fairly healthily, yet never seemed to lose weight.  

She immediately suspected I had PCOS (polycystic ovarian syndrome), ordered some blood work, and later the results revealed that my levels indicated PCOS. My Dr. didn’t complete any further diagnostics, put me on Yaz, and called it a day.

I always struggled with this diagnosis. I had none of the symptoms other than the inability to lose weight while eating a healthy diet and exercising. No skin problems, no excess hair growth, and I even had regular periods.

After graduating college, I was too old to still be on my parent’s health insurance and struggled to find a full-time job (thanks, recession), so I went off birth control for quite some time. I never felt like it was really doing anything for me, and without my Dr. doing full testing to prove my having PCOS, I just chalked it up to another hormonal disorder I couldn’t afford to be tested for.

Of course, eventually things picked up for me, and I was a real adult with health insurance again. All the while my weight had slowly increased. No matter how healthy I attempted to be, nothing worked. I lost hope and started eating what I wanted. “What was the point,” I thought? I was ashamed of how I looked, and how I felt – so I put off going back to the Dr, something I knew I desperately needed to do.

Last year, I finally bit the bullet. I found an OBGYN that specializes in PCOS and made an appointment. “She’ll recognize that I don’t have it, and maybe will know what’s actually wrong,” I thought.

My Diagnosis

When my appointment finally came, I told her my concerns. She was shocked I was diagnosed without a full physical exam (which includes an ultrasound – basically visual proof of cystic ovaries). She examined me and said “I don’t think it’s PCOS. You don’t look like you have PCOS, or fit the typical profile, but let’s do all the routine testing so we can rule it out.” So they took some blood and scheduled me for a follow-up and an ultrasound.

The day of the ultrasound, with my heart pumping, I walked into the Dr’s office. I was in a fog as the ultrasound tech took me back through the hallway. I’ll never forget her saying “would you like to pee, because I need your bladder to be empty”. I quietly shook my head yes. Oh, did I fail to mention the ultrasound for PCOS is a transvaginal ultrasound (ie “internal”)?

Finally, after we were in the room, I warned her that I was at the tail end of my period. Yes. I had an internal ultrasound. While on my period. Welcome to womanhood. She assured me that it wasn’t a problem as if any amount of assurance makes it ok that you’re lying half naked on a cold table in a room with a stranger shoving a probe up your hoha, during your most painful and emotional time of the month. But I digress.

I laid in discomfort as she explored all of my reproductive organs. She asked me if I wanted to start a family. I answered her small talk with a simple “yes”, knowing that I was going through this for nothing. She finally started examining my ovaries. And I saw them. A small string of “pearls” around one of my ovaries. The physical proof that I had convinced myself would not be there.

She concluded the exam, capturing images of my ovaries. I finally had an ultrasound image of my own, like so many of my friends. Only mine was evidence of a body that would do anything it could to strip motherhood from me, instead of a growing life in my womb. It. Was. Heart. Wrenching.

After the exam, I met with my Dr, who confirmed my blood work and my ultrasound pointed to not only PCOS but also insulin resistance. I discussed my desire to start a family. We came up with a treatment plan and instructions that I couldn’t even THINK about having a safe pregnancy (if I’m even capable of getting pregnant) until I lost at least 60 pounds.

Changing My Lifestyle

My world was shattered. But I eventually pushed through those feelings and used them as a catalyst for positive change in my life. I began eating more whole foods, steering clear of carbs for dinner, and going on walks twice a day. I try to get as many nutrients as possible from healthy foods (those with PCOS typically have vitamin/mineral deficiencies) while taking supplements to make up what I just couldn’t consume (eating all your vitamins is hard ya’ll!).

My progress has been slower than I’ve wanted, but my lifestyle has been a real constant change that I know will be part of my life forever. The real drag of PCOS is that it causes weight gain and makes it more difficult to lose it. While the best way to alleviate symptoms (infertility, the aforementioned weight gain, etc) is to lose weight. It feels like a never ending battle.

On top of everything else, incessant questions about when we are going to start a family/why we haven’t started a family/you are going to have the cutest kids, etc. take a little piece of my soul every time they’re asked. I’ve always envisioned myself as a mother, but as each year goes by, I realize that may not be my destiny, no matter how badly I want it. If you are someone who does this to a friend or loved one – please stop doing this immediately. One, that person may be dealing with a fertility disorder (raises hand), and two…well…it’s just plain rude (sorry, not sorry. I’m calling you out).

Educate Yourself

September is PCOS awareness month, and I’m not going to act like an expert, as I find my experience with PCOS very different than the typical woman. But I do urge you to educate yourself. One of the best sources where you can learn more is the PCOS Awareness Association. Most women with PCOS never know they have it, yet it’s the number one cause of infertility.

I’ve had so many reservations about sharing this. If it helps just one woman, it will all be worth it. Let’s talk. Tell me below if you’ve ever struggled with PCOS or any other hormonal disorder. Or if you’ve experienced any health issues – let’s lift each other up as women. Please don’t think you’re alone.  

Stay Dairing.