Updated: Dec 8, 2020
Through the lens of a twenty-something year old with Polycystic Ovarian Syndrome.
For those of you that don't know what PCOS is, it is a health condition that affects millions of people in the world through hormonal imbalance and other existing symptoms. PCOS stands for Polycystic Ovarian Syndrome.
Symptoms of PCOS could range anywhere from fatigue, weight gain, hirsutism, acne, infertility, headaches, pelvic pain, or hair loss. A woman’s menstrual cycle, heart, or blood vessels could all be compromised, as well.
Both of us have been diagnosed with PCOS and want to be vulnerable with you all about our experiences.
When were you diagnosed with PCOS?:
Nae: December 2015 shook up my entire life. I went to numerous doctors, OB/GYNs, and an acupuncturist to finally be diagnosed with PCOS. I went through a series of blood tests, blood loss and ultrasounds.
Nic: I was officially diagnosed with PCOS in April of 2019, after nearly a year of begging my primary care physician for help, seeking out specialists on my own, and countless rounds of bloodwork, ultrasounds, and sleep studies.
How has PCOS affected your life?:
Nae: The greatest impact was definitely the weight gain that I have experienced. Perhaps, what I struggle with more than the weight gain itself, is looking in the mirror and being okay with what I see. I used to look in the mirror and be confident and proud of my body’s progress. Now, all I see are stretchmarks and an external version of myself that I don't recognize. I have spent the past few years learning to love myself again and struggling throughout the process.
When I started to experience symptoms, it took a toll on my spirit and soul. I could feel myself losing a battle I didn't even know I was fighting. People around me were complaining about my irritability, my moodiness and my frustration about EVERYTHING. Granted, I was diagnosed the same year I had lost my Dad to cancer. So, my mom and I thought many of my symptoms were stress related.
Prior to and during my early stages of PCOS, I was experiencing headaches and fatigue. I still struggle with being tired constantly. However, my headaches have nearly subsided completely (with some help from medication, vitamins and diet restrictions).
My first serious sign of PCOS was severe blood loss. Once this started happening, an appointment was made immediately with my primary doctor. This was the WORST experience of my life. I left this appointment crying, believing that all chances of ever giving birth and getting this illness (that I didn't even understand) in control were completely out of the question for me. From there, determined to get the answer I wanted—needed—I searched for a new primary. I needed someone that would hear me and want to help. Once I found an amazing primary physician, I searched for an OB/GYN that I could trust. I never realized how fragile this topic was to me until I was put through the ringer. When I found my GYN, everything changed. She protected me, heard me, and gave me hope to get back control of my life.
PCOS became an obsession for me. I found myself advocating about the syndrome to people, recommending treatment and researching all I could about it. Perhaps, to a certain level this would have been healthy. For me, it was way too much. Since then, I have taken a step back from my obsession.
I have joined a number of support groups, found confidence in my friends and realizing that my loved ones love me for me. I am thankful that I have these resources and am working on finding even more balance.
Nic: For me, it was the symptoms leading up to my diagnosis that were the worst. I had gone from my lowest adult weight in 2016/2017 to my heaviest in a year - a weight gain of nearly 70 pounds, all while continuing to eat healthfully, work out five times a week, and striving to walk 10,000 steps or more most days of the week. The following year brought even more weight gain, acne (which I had never had in my life; I was lucky as a teenager to get just one or two pimples around the time of the month), headaches, fatigue, stomach issues, and irregular periods despite being on birth control (I had been switched to a different kind of birth control after starting to complain about these symptoms, which only seemed to worsen them). Looking back, I’ve probably had PCOS since I was a teenager; my mom took me to her OBGYN after nearly a year of having completely unpredictable periods - sometimes I would get heavy periods for weeks at a time with horrible cramps, other times I would go months without it. Instead of looking into the issue further, I was put on the pill, which helped regulate my cycle - and that was that for the next ten years. I’ve had flare-ups of stomach issues over the years; these were met with colonoscopies, elimination diets, prescriptions, and daily doses of Miralax. For my headaches and migraines, I had gone to neurologists and chiropractors, which again resulted in elimination diets/food and mood journals, prescriptions, massage technique, and homeopathic remedies.
Advocating for myself is what led me to this diagnosis, and honestly it kind of felt like a relief. For a while I was convinced my body was malfunctioning, or it was all in my head. But I researched, I pushed, I called dozens of doctors and specialists, went to nutritionists, dieticians, even attended weight loss and health retreats, and finally I found the right people who asked the right questions, ran the right tests, and made the right diagnosis. I had been quick to cross PCOS off my own personal list of “Things that could be wrong with me” because I didn’t have what seemed to be a key component: excess hair growth. That just shows how much misinformation there is out there and how misunderstood and complex this syndrome is. I realize now that I’ve just been treating the symptoms of this condition for the last 13 years. Nobody ever connected the dots, including me, until things got out of control.
My diagnosis is still somewhat new to me and I’m still learning all that this condition is and what it means to have it, but I have found a great network of women through it. You fellow Cysters have given me so much more understanding, confidence, advice, acceptance, and hope than any doctor or website could. I am thankful for that community and knowledge base as I work my way through this.
What symptoms have become most prevalent?:
Nae: At first, I was losing a lot of blood and growing hair where a girl really doesn’t want it. After my diagnosis, I was able to get the blood loss in check and weight gain became my biggest demon. I was a swimmer my whole life, worked hard on my body - and still do. However, no matter what I did, nothing seemed to help with losing weight. I still struggle the most with weight gain since most of my other symptoms are in check. I take medication for acne, weight control, hormonal control and hirsutism.
Nic: For me, the weight gain has been the biggest thing. I went from feeling my best to feeling my worst, and despite doing everything I can to try to lose weight, it’s discouraging to see the scale stay the same - or go up - instead of going down. It wasn’t until the fall of 2019 that I really started to talk to other people with PCOS, join online communities, read blogs, and try PCOS-specific workouts and meal plans. I am hoping that once I am able to lose weight, many of my other symptoms will subside.
What are you doing to overcome PCOS?:
Nae: Honestly, I still get hair in places that I am uncomfortable about. About every 7 to 10 days I wax my upper lip, face and chin. During the winter, I sometimes feel more comfortable because I can use a scarf to hide my insecurities. This is something that I am working on and becoming more comfortable with. Also, as mentioned, I take a few different medications. Currently, I am on Metformin, Spironolactone, and Lo Loestrin for birth control. The Metformin helps with weight control and keeping my sugar levels in balance. Spironolactone was prescribed to reduce male hair growth patterns.
Moving forward, I am focusing on re-working my diet and sticking to a strict workout plan. A Keto diet has been suggested to me on numerous occasions. After looking into what this type of diet entails, I don't think it’s the right option for me. The plan is to stick to consuming low carbs, frequent small meals and plenty of water. Last year, I began to cut dairy and processed sugar. I have felt a million times better after cutting dairy - plus all of my constant headaches have almost completely stopped. Also, I have made a resolution this year to stop drinking beer. It’s full of empty carbs and totally not worth the after feeling. Late in 2018, yoga became a big part of my life. Part of the practice of yoga is to be mindful of your body as a temple and fueling it accordingly. Give yourself the love and care it deserves through healthier food choices. As for my workouts moving forward, I will keep up with cardio (walking and swimming) and strength training.
I’ve wanted for so long to look the way I did before I was diagnosed. To be honest, I don't think there is anything that I have thought more about. I spent this last year working on finding peace within myself and the way that I look. Some days, that is nearly impossible to do.
My personal goal is to find confidence, again. I want to stop judging myself and blaming this diagnosis for how I feel.
Nic: I’m on 2000mg of Metformin a day and my endocrinologist has helped me find a birth control pill that’s right for me. I’m trying to focus on eating low-carb (not keto; it’s not a realistic long-term option for me and my doctors have warned against it), low-dairy, low-sugar diet made up of mostly whole, clean foods. Whether trying to lose weight or not, eating healthfully just makes you feel better and it fuels your body in the best way possible. Exercising - especially HIIT and strength training - makes me feel great and I want to continue to push myself in my workouts, as well as being active throughout the day. I am actually going to my OBGYN soon to get some tests run to rule out fertility issues. My fiancé and I hope to start a family in two years so I’d rather know now than later if we may have any difficulties due to my PCOS.
My goal for this year is to learn to love myself again, because self-love and confidence shouldn’t be based on your jean size or how good you look without makeup (easier said than done, right?). I hope all my fellow Cysters are able to do the same!
XO - N&N