[Trigger Warning: We’re chatting body image, public commentary on weight, and health problems with a sprinkle of NSFW pictures too.]

When I wrote the post outlining my crappy fall (before it got crappier with walking pneumonia), I mentioned how PCOS insidiously corrupted my body, leaving me with symptoms ranging from abdominal weight gain to low vitamin D to scary high triglycerides. Many of my readers sent messages of support or asked about the disorder as well as the book I recommended 8 Steps to Reverse Your PCOS by Fiona McCulloch. Since PCOS affects roughly 10% of all women and trans men of reproductive age, I thought it merited further discussion, particularly because many of us also suffer from depression, anxiety, and poor self image related to weight gain.

Fun Facts About PCOS

• PCOS, or Polycystic Ovarian Syndrome, is an endocrine disorder typically categorized more by a collection of specific symptoms, usually focusing on whether the ovaries contain enlarged follicles. However, recent studies have shown there are four phenotypes ranging in severity. Less severe phenotypes may present with symptoms atypical of older definitions of PCOS.
• PCOS is often linked with auto-immune conditions, inflammation, insulin resistance, hypothyroidism, and both adrenal and hormonal imbalance.
• PCOS symptoms include: irregular periods, infertility, weight gain (especially around the abdomen), fatigue, insomnia, unwanted hair growth, thinning hair on head, acne, darkened patches of skin, depression, anxiety, pelvic pain, headaches and hormonal migraines, inflammation in joints and muscles, carbohydrate cravings, hypoglycemia symptoms if there is a long break between meals, and so on.
• PCOS can also lead to high blood pressure, high cholesterol, heart disease, and type 2 diabetes.

I was diagnosed with PCOS at twenty after years of irregular menstrual cycles, a diagnosis which was officially confirmed during surgery. Somewhere in my paperwork, I have actual pictures, because, hey, how often do you really get see your uterus and ovaries? My doctor at the time suggested birth control combined with dietary and exercise changes to improve the symptoms. The severity of PCOS was never explained to me, and I generally treated the disorder as an inconvenience—a bothersome but harmless nuisance which made my periods late and weight loss challenging. If my doctors weren’t worried, why should I be?

A couple years ago, I started to feel “off.” Nothing major, just a bunch of little things. I became suddenly lactose intolerant, my periods were more irregular, and I struggled with weight gain. At the time, my research indicated the potential for celiac’s disease since sudden lactose intolerance is a hallmark symptom, but without insurance, I could only speculate. Through the ACA, I was eventually back among the insured, and I became a woman on a mission. My first doctor’s appointment was scheduled, and I wanted tests for celiac’s, hormonal imbalance, and thyroid function. Something was wrong damnit, and we were going to find it! My primary care at the time only ran TSH for thyroid (I’m not going to get into science-y technical details here as there are better resources), which I later learned to be useless in diagnosing thyroid problems with PCOS. He also referred me to a GYN for birth control and a GI doctor for the celiac’s tests. After months of blood work and biopsies, I discovered I did not have celiac’s nor any other problem. I was “healthy.” I certainly didn’t feel healthy, but I was tired and disheartened by the process. I began to question myself. Was I really sick? Was this just part of getting older? Was I looking for something to be wrong?

With my thyroid and digestive system pronounced “normal,” I began playing birth control roulette. My happy weight is 150 to 155, but I was bouncing between 160 and 165. My periods were like my cat, coming and going as they pleased. The obvious solution to most physicians is prescribing birth control because for PCOS it’s kind of like duct tape: not always the best way to solve a problem but certainly the simplest. The hormones force your period back on track, and it can have positive effects on acne, hair thinning/growth, and even weight. However, finding the right birth control is a challenge, especially with PCOS because you are already battling hormonal imbalances. I took my first prescription for five weeks and gained two pounds every week. My boobs ached so much I slept in underwire bras to ease the pain. I quit taking them and gave my body a few months to recover, lost about five pounds of the weight, and spun the wheel again. The next one was better as far as the boobs were concerned and my skin was radiant, but the weight started piling back on and my emotions were, shall we say, tempestuous. You know all those sexist “time of the month” comments? Well, I embodied all of them . . . all day . . . everyday.

Another break. By now, I was 175 and flat out told my GYN I cannot gain anymore weight. Bad shit will happen if I do. Enter the Mirena IUD. An IUD is a long term form of birth control, which allegedly does not cause weight gain because the hormones are contained inside the uterus. A lot of women stop having periods with IUDs which is good for someone like myself who also suffers from endometriosis, which is basically a disorder where uterine tissue grows outside the uterus. Of course, delving deeper into the research, including the Canadian version of the Mirena site, more symptoms are listed, including some tasty bits about how it should not be prescribed to anyone struggling with anxiety or depression. Whoops! I had it inserted at the (unbeknownst to me) worst possible time. It was one week before my brother’s horror movie inspired attack. Yeah. My general habits in that time frame afterward were not so hot, so I couldn’t be sure if the new pounds were from the IUD or from alcohol. Best to wait and see. Eventually, I coped with PTSD and resumed healthier habits. Guess what? The weight wouldn’t come off. I didn’t gain anymore, but I wasn’t losing anything either. My doctor along with several Mirena advocates noted you sometimes need to wait as long as a year for your body to really accept the IUD and settle into a routine. I tolerated the problems, praying they would resolve on their own with time. Spoiler alert: They didn’t. The second I stopped exercising or slid back into eating fast food once a week, the weight gain started again. Keep in mind, before I started any form of birth control, I was doing the same things but was bouncing between 160 and 165. Now I was 200 pounds. Enough was a enough.

I had the IUD removed in September of last year and then scheduled a physical. My triglycerides were so high, it was impossible to read other elements of my cholesterol, and my vitamin D (on a supplement) was dangerously low. My blood sugar was verging on pre-diabetic, and my resting heart rate was around 90bpm. Meanwhile, I had never stopped feeling like something was truly wrong with my body. My new primary care prescribed 50,000 IU of Vitamin D taken once a week, which was a huge mistake as the first two days destroyed me with side effects. We retested my triglycerides only to find them higher than the last test. He suggested prescription fish oil, but when my insurance wanted pre-authorization, he switched to straight up cholesterol meds. I googled them, and the side effects didn’t exactly sell them to me.

At the time, I was stressed from my housing situation and cancelled my follow-up appointment to process my grief and find some peace. All through this epic fail, my dad watched on helplessly while I suffered until he found Dr. McCulloch’s book. The more I read, the more relief I felt. Every symptom I had, including some I wrote off as “part of being me,” were explained in detail on those pages. I didn’t need a diagnosis. I had one for over ten years: PCOS! She offers expert explanations of why TSH testing doesn’t always show thyroid problems, why PCOS causes Vitamin D deficiency, even why the damn triglycerdies were so high. On every one of those endless medical forms I filled out with every doctor I saw, I wrote PCOS. No one thought to connect the problems with the disorder, and the solution was to prescribe more medication for the symptoms. I emailed my doctor about treating the PCOS instead and received a two sentence response: “PCOS is a GYN problem. I can refer you to a GYN.” I was freakin’ furious (as in I did not say “freakin’” when I read it).

Just as I was getting my bearings about the changes I needed to make, walking pneumonia struck. Steroids and two months of couch time bumped up my weight to 210 pounds—the same weight I was during my first professional bra fitting. I was so angry, angry with myself, angry with my body, angry with my doctors. How I could let myself get to this point again? I swore never to be this unhealthy, that I would stay in shape and take care of myself. When I felt able, I made an appointment with my GYN who listened to my concerns and referred me to an endocrinologist. Given the past labs and the symptoms, she thought it best to coordinate with an expert, something I appreciate. The entire experience reminded me that when it comes to your health, you are your best advocate. I am in no way disparaging medical professionals, but you need to trust your instincts and ask questions. Without that advocacy, you could take medications which make you worse or miss an important diagnosis. Women’s health concerns are more likely to be dismissed than men’s, and overweight people often suffer from doctors viewing the extra pounds as the sole cause of all that ails them. Stand up for yourself, and don’t ever let a doctor make you feel like you don’t know your body. If you feel sick, then chances are something underlying is wrong.

I haven’t seen the endocrinologist yet, but I am hopeful. Dr. McCulloch’s book is an essential resource if you have PCOS. She expertly analyzes how the body creates destructive feedback loops which exacerbate problems ranging from inflammation to adrenal imbalance to insulin resistance. PCOS is a big deal. When properly managed, you can eliminate many ill effects, but when it’s not, PCOS can cause life threatening repercussions. It affects everything in your body, targeting each system and weakening it. Dr. McCulloch writes from a place of understanding. She suffers from PCOS and incorporates up-to-date information on the disease as well as comprehensive lab suggestions and treatment options, including dietary and lifestyle changes, prescription medication, and herbal supplements.

The continued weight gain did not go unnoticed by my body image demons either. They sensed weakness and descended upon me with a vengeance. I could barely look at myself in the mirror, none of my clothes fit, and to top it all off, I was and am still sick. How can you lose weight when you can’t breathe well enough to exercise? I was at an emotional low point, and for the first time in a long time, other people made it worse. On my counter, I have a framed picture of a newspaper clipping from when we opened six years ago. I love it because it symbolizes a dream made reality, a proud moment in my life that I share with everyone. With my face and stomach becoming rounder, comparisons to that blissfully naive twenty-five year old were inevitable I suppose. “You look so young.” “You were so pretty then.” “You were a lot thinner.”

It hurt. A lot. It hurt so much I was going to take the picture off the counter, tuck it away somewhere even I didn’t have to see it. It’s hard enough to stay positive about your body when your inner dialog harps on your weight and size, but when others entangle themselves in your narrative, they unintentionally validate every negative thought you have about yourself. It becomes that much easier to be critical the next time, knowing the outside world reinforced your existing beliefs. After the last comment I received about my weight, I fought back tears and extended my hand to collect the frame. But, I stopped. I stopped because I am damn proud of myself, of what I set out to do with this store and of what I’ve accomplished. If we closed tomorrow, I can honestly say this experience changed my life and the lives of others in a good way. I’ve made a positive impact on other people and on our community. That picture was the first step toward greatness, and now I’m going to take it down because of some stupid comments that I don’t look the same anymore? Screw that. I went through a lot the last six years, and I’ll be damned if I’m going to let someone telling me I looked thinner when we first opened destroy the wonderful milestone that picture represents. You don’t get to take that from me.

I’m not going to lie. I still struggle daily. My weight is a reminder that just as I need to curtail these perfectionist ambitions with my work, I also need to cut my body slack too. When I weighed 210 pounds before, I worked at a computer, never exercised, and ate an abysmal diet (A “healthy” lunch was peanut butter and cheese crackers, Doritos, and Coke). Losing weight was slow but easier as I only had to make healthy changes. This time, I am not sedentary nor do I eat much in the way of fast or processed food. I drink water and green tea, avoid sweets, and generally do alright in the food department (okay, pre-book I was a bit of a carbaholic for potatoes, rice, and bread). Moving forward means cutting even more out of my diet and shifting my exercise priorities to accommodate my current metabolic conditions. It means more sacrifice.

My plus-size family set the stage for how I generally viewed weight. My grandparents were warm, kind, lovable fat people who gave their nutritionist the bird and ate whatever the hell they wanted. Life was too short. They paid the price with a host of weight and dietary based illnesses, the combination of which ultimately led to their passing. But, for some of us, our bodies demand more to stay healthy than we want to give. If all you need to do is cut out fast food and drink water to lose weight, it’s a different experience than the person who has to monitor the insulin count of every meal and every snack. Exercise is another source of tension. My brother and I engaged in a nasty argument because he claimed I was making excuses for not exercising, a sentiment echoed by another (coincidentally) male friend. Both never had experience being so damn out of shape either. The closest my brother came was after his recovery. He could only run the mile in eight and half minutes and needed to drop his weights by twenty pounds. He complained . . . whined incessantly about incredibly how out of shape he was now.

I had well meaning friends tell me to cut out carbs, pick up running, take weight loss supplements, join a gym, go Paleo, go Keto, and so on. If you’ve never struggled with weight, especially the result of an endocrine disorder, then telling someone to just eat less and exercise more is kind of a slap in the face, provoking a sarcastic “Gee whiz! Why didn’t I think of that before? You’re a flippin’ genius!” worthy moment. Try lifting weights when you are so tired you can barely lift yourself off the couch or cutting back on carbs only to feel starving all the time. It is easy so spout off suggestions or make thoughtless comments, even if they come from a place of kindness or concern, when your body responds differently. Hell, the last time I started losing weight, a well-meaning nurse told me I looked fantastic. “Before you were just a pretty face, but now you’re the whole package.” At the time, I was twenty-one and coming off months of being harassed by male peers about my weight, and that compliment made me feel amazing. Flash forward ten years and now the comment stands out for all the wrong reasons.

My episode of PCOS Gone Wild has taught me how much I internalized about weight and body size despite promoting body positivity openly. I frequently talk of not judging people, of showcasing beauty in all shapes and sizes, and of dumping this stupid nonsense about our weight in the first place to focus on what makes us awesome. But, then I call myself “fat” or complain about my current weight—a weight, by the way, other people weigh now or want to weigh in the future. That’s pretty shitty of me. Holly was right on the Lingerie Addict. There’s a dark side to the body positive moment. There’s this inherent conflict between critiquing yourself while also promoting beauty for all body sizes and shapes. It reads false and disingenuous because you inevitably criticize something about your new body that is identical to someone else’s existing body. Who cares if you claim every body is beautiful if, when it’s crunch time, you can’t even love your own? I don’t have these answers to these questions, but it made me think a lot harder about why I was tearing myself down, where these feelings came from in the first place, and how I could do better in the future, not only when thinking about myself but also in how I interact with others. Mindful speaking is something we could all practice. And when in doubt, just don’t talk about someone else’s weight or body. You have no idea where they are on their journey or how your words will affect them.

Erica.

P.S.  Here is a comprehensive resource for PCOS as well as a great article from Sweets on losing weight in public.

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