My PCOS Journey
It’s September! September’s always been a special month to me. I used to get excited about going back to school, so excited I couldn’t sleep. So excited I’d get really angry when hurricanes pushed back the opening of school so, yeah, September’s full of fond memories for me. However, September’s also the month I got diagnosed with PCOS. PCOS (Polycystic Ovarian Syndrome) means I have small cysts on my ovaries just chilling out, maxing, relaxing all cool and shooting hornones all over my system and confusing things and stressing me out. I’ll be fine, it’s not life-threatening but it is life-altering and it’s made me ask a lot of questions about my future.
But first, let me tell you about how we even got here. So back in January 2018, I missed a period. I hadn’t diddly bopped so I was sure I didn’t have anything going on in my bell-bell so I kicked back and said “Cool! Free pass month". But then I didn’t have a period in February. Then March. Then I got really busy with work and a couple other things and I wasn’t even really thinking about it. And before I knew it, it was July and still, no period. So I said, alright, I’m kinda starting to miss her, let me go find out what’s happening. I went to my doctor and he referred me to a Gynecologist who prescribed something to kickstart my periods and had me do an ultrasound. We found out that while my bell-bell was still very very empty, my ovaries had apparently grown themselves little friends. Cysters if you will lol.
So yeah, that’s a little about my story, now here’s what I know about PCOS (definitely not everything). It’s genetic and there’s no cure for PCOS so you basically have to manage the symptoms based on what they are and how they’re affecting you. For example, PCOS can impact your ability to conceive and have children, and it is one of the leading causes of infertility, so some treatment options focus on reproduction. It can also mess with your body’s ability to use insulin and cause rapid weight gain and that can result in obstructive sleep apnoea which other than meaning you get awful sleep and are tired all the time, can actually have really serious impacts on cardiovascular health. So some treatments focus on weight management. It can also cause your body to overproduce androgens (male hormones like testosterone), which will likely exacerbate all of the above and lead to increased facial/body hair (hirsutism), irregular periods, acne, weight gain (especially in the abdomen) etc. Some cysters will even have all of the above. I’ve also felt in my own body, and had it confirmed by my endocrinologist that PCOS can also mess with your mental health.
With all of that happening in your body, PCOS can often feel like an all out attack. All these symptoms can hit you at once and you can feel like you have no control over your body, especially if you’re going through a period of rapid weight gain and nothing you do slows that. You might feel out of control or crazy. I know and definitely affirm that being fat isn’t inherently bad, I was fat before PCOS but when my weight ran up 30 pounds in a few months, and I hadn’t changed anything about my diet or activity levels I freaked out a little. I also had a difficult time dealing with insensitive comments from people close to me. Comments on my body have always been unwanted and annoying generally, but when I was already struggling and confused and people chose to pile on, it made me feel really isolated and hopeless. Which is especially depressing when you realize that PCOS is actually relatively common. How many of us feel like I felt?
PCOS makes me think about how cruel we can be. How harshly we judge each other and how we need explanations of illness in order to just be decent human beings and mind our own business. The women in the support groups I joined are always so sweet and kind but they get the most shit, especially from family members and friends who constantly ask them when they’re going to have children, as if that’s so easy under regular circumstances no matter how much you want them, much less when you have PCOS. Then there’s the health squad telling you everything would be fine if you just pushed your body harder, exercised more, ate this, tried keto, tried intermittent fasting, tried juice cleanses, this herb that herb, etc etc etc. There’s also the horror stories of unsympathetic doctors who either jump to weight loss surgery or simply tell you to lose weight. For some people, the worst part of PCOS is other people’s insensitivity.
So yeah. September is PCOS awareness month and that’s my main wish for PCOS right now, AWARENESS. I need more people to become aware of what PCOS is and how it affects us. It will prevent so many from suffering in silence wondering what’s happening to them. Maybe that will lead to more research into better treatments and possible cures. But in the meantime it would be helpful to see endocrine, metabolic and reproductive challenges like PCOS, prolactinoma (which I also have), fibroids, endometriosis etc. on the health agenda more often locally. We’re always talking about NCD’s and the obesity epidemic but are we doing enough to support people in understanding their own bodies so they can seek help if they need to? That’s not been my experience. More often than not, people who look like me are encouraged to have hostile relationships with our bodies, to hate them, to hide them, to starve them, to cut them up, even to ignore them. That’s not healthy and the outcomes — body dysmorphia, dissociation and sometimes intense hatred of ourselves, prove that.
If you didn’t know anyone with PCOS, now you know me. And if you have PCOS or another similar endocrine/ reproductive challenge and you want to talk, my dms are open. I kinda know what it feels like, a little. You can also follow @pcossupportja on IG, they’re really nice and knowledgeable over there. But for my cysters, all I wish for you is health and happiness, kindness and support and a good relationship with your body. It’s what I want too.