As you may or may not know, September is PCOS Awareness Month and I have been dealing with PCOS (Polycystic Ovary Syndrome, defined by the Mayo Clinic as “a hormonal disorder common among women of reproductive age”) for many years. So, I like to pause my usual monthly content (podcasting! history! theater!) to share updates on my life with PCOS whenever September rolls around.
Last year, in this post, I outlined my history with PCOS and what it was like to deal with multiple medical professionals while trying to get this hormone disaster under control. At the end of the post, I talked about my work with a lovely nutritionist who was doing her best to help me. We were a year into the process and had no success, despite her best efforts, yet I was still hopeful. Well, dear Reader, I am here to tell you that things did not get better. In fact, they got significantly worse but, they hopefully will get better now. I think quite a few folks with PCOS will understand this, and people without PCOS might appreciate some more insight into how this largely invisible medical situation impacts the daily lives of those who have it:
The month after I wrote about my hopes the new plan with my nutritionist (hereafter, 1.0) would be a game changer, I still had no results other than a weekly one pound fluctuation at most. Then, she got promoted at her main job in a hospital and left the practice. I was so stressed and upset that I had been diligently following her guidance for over a year and had nothing to show for it that I waited a few weeks before meeting with her replacement (hereafter, 2.0). In those weeks I definitely gave up. I exercised less, I ate whatever I wanted, and nothing happened. By the time I went to meet 2.0 I had gained about a pound, but I was so used to this up and down of minimal weight that I barely blinked at it. In fact, I was more upset than normal, because I realized how little all my efforts had actually done to change my body externally. 2.0 was kind and also a personal trainer, but she definitely believed that 1.0 had steered me wrong, not focused enough on the kind of exercise I should be doing, and that she would personally fix me, and fix me quickly. She attacked pretty much everything 1.0 had told me to do, but then I noticed that over all, her concepts were still the same: exercise (she gave me specific workouts, mostly strength training, while 1.0 emphasized HIIT), carb cutting, and eating small meals throughout the day while avoiding overly processed or sugary foods. As you can probably guess, my result continued to be 0 change and feeling increasingly stressed and frustrated.
In December, I decided it was time to get my thyroid tested - a suggestion made by many people I knew and 1.0 before she left. My Primary Physician had the labs done and told me that although she thought my thyroid looked fine, I should go to an endocrinologist for further testing. She promised everything would get sorted eventually and urged me to keep watching my sugar intake, not eat many carbs, and to continue regular exercise. I dutifully nodded and went on my way, depressed that the lack of an answer in terms of my thyroid left me in the same spot I was in before.
January of 2020 came around and I met with my endocrinologist who ordered a full panel of hormone testing. I'm talking everything from vitamins to adrenals. I learned that hey, guess what, my thyroid was basically doing nothing. I also learned I had high testosterone and DHEA-S, among other things. I had no idea what most of this meant, but I was told they were normal for people with PCOS and I was put on a small dose of a thyroid medication to try and kick it into gear and given Metformin to try and help with the insulin resistance situation that often comes with PCOS.
Then the pandemic hit New York. Everything, including my endocrinologist's office, closed down for in-person appointments. My stress levels (shocking no one) spiked like crazy, and I spent all of my time huddled at home - or at least most of it. I told myself that this was the perfect opportunity to get my PCOS under control. I reassessed all the information I had been given by everyone I'd worked with so far. I implemented daily (masked) walks, usually of about 6 miles. I had my carbs incredibly low, my calories where I had been told they should be, and added in weight training. I was ready to go and attack it full on, and I hoped maybe my thyroid medication or the Metformin would help. The thyroid medication immediately lifted my depression. I hadn't even known it was a symptom of hypothyroidism until it went away. It did little else. Two months ago I had the dosage upped and I'll be reassessed again soon. The Metformin made me horrifically sick. I had been warned that it could cause an upset stomach, but I didn't know just how upset it would be. I was in and out of the bathroom every hour and in terrible pain for days. Just when the pain would start to ease, I'd have to take it again and bring it right back. I did not last long on it. I had to stop it when it became clear my body would not adjust, and this would not get better, it was only compounding and getting worse.
I loved my walks. I liked my strength training. I was used to monitoring everything I ate. I felt like I was really tackling this in the best way. Well, Reader, I gained 15 lbs. The weight just kept coming. I was behaving in a "healthier" way than I had in ages, with more time to dedicate to it than ever before, and I was now heavier than I had ever been in my life. (Spoiler alert: this remains true.) Nothing fits me nicely anymore, even my rings are too small. People tell me I "look great" but it just serves to make me feel more miserable. I don't think body shaming is right, but I don't think telling someone there isn't a problem when they're unhappy in their skin is right either. It doesn't help you feel supported when the world is saying "just be happy as you are" when "as you are" is completely without any control over your body and the situation is continually getting worse. Somewhere around this time my mother pointed out that she was certain stress was what was causing this explosion of weight. I had always gotten heavier the more stressed I was: the first time I gained significant weight was in 2004 when my grandmother died and I was also transferring colleges. I lost that and became happier and healthier than ever. Then in 2016, as I mentioned in last year's post, the disintegration of a long-term friendship triggered my body to go off the rails again. I'm still, in 2020, trying to work that all off. Only now you can add to it job insecurity (pre-pandemic), unhappiness with the weight gain and therefore body image issues, and finally, the onset of COVID-19 and the myriad other stresses that came with the arrival of the pandemic.
I don't remember when I started following Martha McKittrick (aka The PCOS Dietitian) on Instagram, but it was sometime in 2019 when I was still working with 1.0. It wasn't until this year, though that I really started to read her posts. I used to be someone skeptical of what people put online. After all, I'm a historian. I constantly see people present themselves as authorities online when it is clear to actual historians that they know nothing about their alleged fields of focus. But I always liked her posts because she very obviously cared about what she was doing and was passionate about helping people with PCOS. At some point, she did an Instagram post about exercise and I saw among her own words and then interactions with people commenting, a mention of how certain exercises could irritate PCOS symptoms instead of help them. Specifically, something intense like HIIT might not be good for a woman who had high DHEA-S. I have, as of my last blood work, quite high DHEA-S. I had also asked every single medical professional I met with thus far if they could explain to me why when I exercised as instructed, my weight always (without fail) went up and then went down when I did less. Each and every one told me that wasn't possible and I was just noticing a coincidence. I had never felt more validated in my life as I did in the moment I discovered I was not wrong. It was the first time I ever saw someone make the correlation between a specific part of my blood work and how it could impact what was happening in my body. I commented on Martha's post and was thrilled when she told me I was not wrong, I had just likely been dealing with people who did not actually know much about PCOS. I almost cried I was so happy to be understood.
This launched me into a deep dig through her posts and the more I read, the more seen I felt. I learned about how with my particular kind of PCOS I was doing things all wrong. I was stressing my body constantly, on top of being stressed out mentally for multiple years. Everything about me was out of balance and the ways I had been told to treat it were actually most likely making it significantly worse. I discovered how my constant state of being on edge was not necessarily normal and that yes, even what I thought was just my natural state of being a night owl (I am often awake and alert and productive all night, only to go to bed around 7 am and pass out until about 2 pm) could be connected to my cortisol (read: stress hormone) levels. I found ways to help with stress (Kendra Tolbert's yoga videos are my favorite - I can follow them easily, they are geared toward PCOS, and I can do them at home so no one can see my struggle with Downward Dog), am learning the plate method for eating, and trying to undo the fear of carbs and calories so embedded in me by my past experiences. 2020 has been a year from hell, but without the time to dedicate myself to getting better, then actually getting worse, and being driven to the experts for help, maybe something good will come from it.
The hardest thing right now is accepting how much time it is going to take for my body to heal and cooperate. But I am armed with more specific, appropriate information than I ever thought possible. I have learned that just because someone says they work with PCOS patients (and warning: a LOT of doctors/dietitians/nutritionists will say they do), doesn't mean that they actually know much about PCOS but, if you're like me, you want to believe them and you have no reason not to until everything they say is shown to not work. PCOS is complex and it presents totally differently in each woman. Prior to my deep dive into PCOS Instagram, I didn't even know there was a need to identify my root cause and I had been living with - and attempting to get help with - PCOS for over a decade. I hate how common it is for people with PCOS to have to ride these waves to try and find help and how, despite the high numbers of us with it, so many medical professionals appear to devote little time to investigating the details of it in order to truly help their patients. Not everyone can take a pill and mask symptoms and be happy or cut carbs and lose weight. Some don't even need to lose weight at all. There is a lot of work to be done to get the good, individualized care plans out there, but I am so glad I started paying attention to PCOS Instagram, because it has been a source of support and help that I never thought I'd find and it makes things a little less lonely.
My hope this September is different from my hope last September. Last September it was a hope grounded in desperation. This September it is one grounded in education. I like this one better, I just wish I found it sooner.
As they say in Pokemon, the journey continues.
A Few of My Favorite Accounts
These links are all to Instagram accounts, because I've found the mixture of visuals, text, and video they all use to be incredibly helpful. Most of them have websites with blogs as well, and all have content that has helped me at various points.