Updated: Dec 2, 2020
(September is PCOS Awareness Month. I regularly meet people who barely know what it is, let alone what it is like to live with it, so I decided to pause my normal history and podcasting blogging to discuss life with PCOS.)
I first learned that I had PCOS (Polycystic Ovary Syndrome, defined by the Mayo Clinic as “a hormonal disorder common among women of reproductive age”) over a decade ago. I mentioned to my mother that I had not gotten my period in months and she insisted that I visit a gynecologist. I insisted my doctor be a woman, because if we were going to talk about private female things, I wanted to have that conversation with someone who might understand what I was going through personally. You will see that I quickly learned shared womanhood does not guarantee empathy.
Doctor #1 was a middle-aged woman who was slightly heavyset. My mother went to her without issue, but she and I immediately chafed. She pronounced that I had PCOS (my two later doctors did similar testing with the same results) , which manifests differently for every person who has it. You can find a full list of PCOS Symptoms here, but for me (so far) it mostly involves weight gain, losing the weight being impossible, missed periods, anxiety, and a need to pay attention to hair maintenance more than I’d like. Doctor #1 refused to acknowledge my weight gain concerns, telling me that I was in my 20s and merely needed to hit the gym more, and prescribed The Pill (as in, a birth control pill) to force my period and hopefully balance my hormones. The result was not what I hoped. Immediately I became starving. I don’t mean merely hungrier than usual. I mean fierce hunger pangs at all hours of the day and even waking me up at night. I gained nearly 15 lbs in the first week and returned to her office. She shrugged it off and told me that as someone who was overweight herself she didn’t want to talk to me about weight because it was make her a hypocrite. I insisted that I wanted to nip this in the bud. She told me it was a mere weight fluctuation and she would not address it until I gained at least 30 to 40 lbs and was squarely in the obese category. I knew my body, was certain she was wrong, took myself off of the pill, and dropped her as my gynecologist.
Doctor #2 was a few years later, when enough time had passed that I could stand to try again. She came as a recommendation from a family friend and gave me a good feeling because she had a pleasingly crisp accent and reminded me of Clair Huxtable – elegant, strong, and smart. She gave me a prescription for another form of The Pill after hearing about my bad experience with Doctor #1. I went home cautiously hopeful, trusting she knew what she was doing, and prepared for the adjustment period she warned me about. What came next was the single worst medical experience of my life. This version of the pill triggered every negative emotional side effect possible. I cried everywhere, all the time. I couldn’t sleep. I would think I was fine then suddenly be overcome with an intense feeling of hopelessness. One night, my parents had to sit up with me to make sure I didn’t do anything unfortunate because I could not stop sobbing over how useless my life was, how I was a disappointment to the world, and how nothing would ever get better.
I told myself this was the adjustment period, but it continued unabated for over a month. As the second month wore on, I reached my breaking point. I could hardly stand to leave the house. I had a very close friend (I love you Samantha!) who was moving across the country and when I walked into the bathroom to put makeup on before leaving to say goodbye to her, I broke down weeping without any understanding as to why. I had to cancel my plans, yet again. This could not continue. You might think, Dear Reader, that Doctor #2 would help me here. She did not. My frantic phone call was met with the following response: I was wrong about what was happening. My bad experience with the adjustment period of the first month put it into my head that it would happen again and I was bringing it upon myself. Again, I took myself off the pill and abandoned this gynecologist. I felt like a regular human again within the week.
At this point the idea of ever seeing another gynecologist again did not appeal, but then my period stopped coming. I went six months without it. That meant going through all the delights of PMS (bloating, moodiness, etc) without ever having it end. The bloat just increased, and with it the misery. I trekked to Doctor #3, again recommended by a friend. This one was a young woman who reminded me a lot of another friend also named Samantha, who you might know from her Footnoting History episodes. She got an even longer tale of woe, and she actually listened to me! She tested me to make sure there was nothing building up in my body that required immediate action and when she saw there was not, she promised me she would not give me any form of The Pill unless I asked to try it again. She gave me two options: First, she could give me something that would immediately bring on my period just to make sure I got it after six months without it and then we could see if that kicked my body into gear. If it didn’t, we could try again. Second, I could start looking at my sugar intake. If I limited my sugar, she suggested, my body might start functioning normally again.
This was the first time anyone mentioned a natural method of coping with my PCOS.
Even writing about it, I get angry again, because I cannot believe Doctor #1 and Doctor #2 pulled out their prescription pads, told me The Pill was how it was treated, and never once gave me other options. I was overcome with emotions because I felt like finally – finally! – a doctor actually listened to me. I went home and began meticulously tracking my sugar intake. Within a few weeks I got my period naturally and I have not had a gap that big since. It should not have taken me multiple doctors and many years to get the help I needed, help that came only when a doctor took the time to hear my story, consider what did and did not work for me, and present me with multiple potential game plans. I shudder to think where I would be if I did not remove myself from the doctors who clearly had no interest in helping me. I did not hug Doctor #3 but I thought about it many, many times.
That isn’t to say my War Against PCOS has ended. Watching my sugar has massively helped me, but in 2016 I went through a traumatic friendship breakup where I admittedly was medicating myself with all the foods I shouldn’t be touching. I ended up gaining over 40 lbs (maybe I should go back to Doctor #1 and she would help me with that now!) and I am still trying to lose it. I’ve worked with a wonderful nutritionist for over a year and the scale has budged a whopping 4 pounds total, in 15 months. But unlike Doctors #1 and #2, Nutritionist #1 has been nothing but helpful and supportive, doing extra work to find ways to help me and consulting with her colleagues to try and solve this puzzle. On paper I should have lost all my weight by now. In reality it is nowhere near that easy. Just last week we started a new plan. I really hope this one works because I would like to feel comfortable in my body again. It is exhausting to constantly feel like you have no control over the behavior of the body you inhabit. There have been many times where I’ve considered giving up and accepting I will never be happy with myself because of PCOS but I am glad to have people who want to help me - and this includes my friends and family who regularly witness my frustrations and love me even when I am inconsolably depressed about it. Maybe one day I will get to where I want to be, but if I don’t it won’t be for lack of trying.
PCOS can’t be cured, but many of us who have it work to manage it every single day. Sometimes, as detailed here, the medical professionals who should be our greatest helpers, do more damage than good. The thing is, the true helpers are out there. If you have PCOS don’t stop trying until you find the ones who value your health and listen to your needs. If you don’t have it, but know someone who does, be patient with them when they need to vent about their struggles. It’s a lifelong battle, and it can feel very lonely, but it shouldn’t have to.