Conversations with… Cassy (Subject: PCOS)

For those of you that don’t know, I am one of the 1 in 10 women who have PCOS. PCOS, or Polycystic Ovary Syndrome, is what the name suggests and then so much more – irregular periods, hormone imbalances, acne, weight gain, fertility struggles, excess hair growth, thinner hair on your head, headaches, mood swings… shall I go on?

When I finally got around to researching PCOS, I realised that whilst no two women’s PCOS experience is exactly the same, women are reaching out and helping each other manage what can be an isolating, scary condition.

One of those women is Cassy. Originally from South Africa, Cassy now lives in the Netherlands with her husband. A lover of carbs, long naps with her cats and a good book, Cassy writes the blog and shares her PCOS journey in the hopes that her story could educate and help others. From one ‘cyster’ to another, Cassy – you’re doing a great job!

In your own words, describe your PCOS diagnosis.
I was diagnosed with PCOS at the worst possible time in my life. Not only did had we just got the news that my grandmother’s cancer was back and here to stay, but my husband and I had just started trying to conceive. I was feeling incredibly emotional and vulnerable to say the least!
Saying that, a part of me knew that something was ‘off’. The months leading up to the diagnosis, my PCOS symptoms gradually got worse. It started with a sudden, out of the blue acne breakout that refused to go away. One day I went from clear skin with maybe one or two pimples to full on back acne – how lovely! Next was the sudden weight gain that happened in the mist of my bicycle training. To make a long story short – I want(ed) to do a mini bicycle tour in the Netherlands and to train for that I would attempt to bicycle 150km a week. Instead of losing weight, I gained 3kg a week. It didn’t make any sense. I was incredibly active and eating healthier than ever, yet I was gaining weight like crazy. In this time, my acne went up another level and boy oh boy, the excessive hair! I knew it was hormonal but I figured it was only temporary, just one of those things that need time for your body to figure out then return to normal. As I took another lap in the denial pool, my period starts to act up. Days after my husband and I decided to try to start our family, instead of ovulating like I thought I would, my period started… two weeks early. My heart dropped into my stomach and I feared the worse. Again, though, I clung onto denial and hoped it was just a temporary thing.
The next month, the same thing happened. Instead of ovulation, I would get this weird period (I call it weird because it was too light for what I consider a period and only lasted three days). This was the push I needed to go see my doctor. I was done lying to myself. Something was quite clearly wrong and if I wanted to get anywhere with conceiving, I had to seek answers. Two weeks later, the gynecologist probed around for two seconds and diagnosed me with PCOS.

When you were first diagnosed, how did you feel?
I was incredibly scared. I immediately realised that starting my family was going to be a lot harder than I had imagined and incredibly painful… and I was right.

How do you manage your PCOS now?
I wish I can say I have it all figured out but it’s the opposite, really. To be one hundred percent truthful, I’m managing my PCOS with being open to try new things. Instead of allowing PCOS symptoms to run rampant and wallow in self-pity, I’m trying out new diets, new workout routines and new supplements. I might stumble onto the key to PCOS or I might find one thing that works for me, I have no idea, but at least I’m doing something. I’m basically experimenting – Will fasting once a week help me lose or manage my weight? Will limiting my meat intake help? Will limiting my sugars help? Will limiting my carbs help? Will doing this workout routine actually help or will it do more damage than good?
My approach to PCOS is to experiment with all types of different things, hopefully find something that helps and then try to find a good balance. If I see that cutting out carbs works wonders, I will then try to find a way to incorporate that into my daily life. There is no way I can survive cutting out all carbs forever, though. To say I love carbs would be a drastic understatement – potato is even in my website’s name! I simply need to find a good middle ground between relieving my PCOS symptoms while finding a routine that I can hold onto for the rest of my life. It sounds easy, right?

What is the biggest PCOS myth you with people would correct?
If you have PCOS you’re basically bipolar and you can’t have kids. Yes, we tend to get incredibly emotional (mainly because we’re overwhelmed, scared and feel like we’re on our own with this but also hormones) but bipolar is something completely different. And yes, technically some women with PCOS couldn’t conceive because of their PCOS, but some still conceive quite easily. In my experience, most of us conceive with medical treatment (hopefully I fall into that category).

Why is it important for you to write about PCOS on your blog and share your diagnosis with the world?
I honestly mainly write about my PCOS, which goes hand in hand with my infertility journey, because it helps me process everything. The added bonus of sharing it so publicly is that I get to connect with people who are on a similar journey to me, open myself up for advice and all in all, feel less like I’m alone in this.

How has having PCOS made you change the way you look at and plan for the future?
I wouldn’t say it drastically changed my world views for my future but it did make me more cautious of my body. Prior to the diagnosis, I was cautious of my health and fitness but now it’s on an entirely new level. I realized what I considered healthy before (which others would still consider healthy), was damaging my body. My diagnoses made me more cautious and a little scared, if I’m honest.

There is an argument that PCOS patients are having to basically treat themselves because there is a lack of understanding and research in the medical community about PCOS and other conditions like endometriosis. Where do you stand on this?
Heck yes, we treat ourselves! I think it depends of the country you reside in and your doctor but from my personal experience, I’ve had little to zero help and guidance. What I’ve done to treat some of my symptoms is purely from my own research.
I was the one that decided to try out supplements and a new diet. My doctor literally told me that I have PCOS and then proceeded to say that with the correct lifestyle habits you can treat your symptoms and that was it. I had to sit down and leaf through hours of bullshit before stumbling onto shit that might actually help me. My doctor(s) has just been a pretty decoration up to this point.

So many women are opening up about their health and starting important discussions regarding women’s health. How does it feel to be a part of this community that talks about these topics?
It feels good. I personally feel that it’s so important to talk about serious subjects because not only does it help you heal, it’s also making an impact in society. By telling it as it is, we’re ripping away the myths and educating others.

What advice would you give someone who has just been diagnosed with PCOS?
This is going to sound cliché but it is what it is – Take it one day at a time. Past Cassy is rolling her eyes, but hear me out. When I got home with the diagnosis, I nosedived into the internet. I was desperate to learn everything there is to learn about PCOS and know the key to treating my disease in the very same night. I watched YouTube video after YouTube video, I read countless blogs, I ordered way too much PCOS books from Amazon (some I still haven’t read) – I spiralled. I was terrified. I feared the worst and cried constantly. I was overwhelmed.

Then, a good month later, I decided to just focus on the one PCOS book. I ignored the rest, read one book and followed her advice. A few months passed before I opened myself up to the next step which was too experiment with new lifestyle changes. I simply took it one day at a time. I started at step one, ignored the rest and, once I made it through that step, moved onto the next. I did allow a shitload of time between step one and step two so I wouldn’t overwhelm myself again. I get overwhelmed quite quickly, mainly because I want to complete 101 things at the same time and when I can’t, I derail. It’s one of my biggest flaws, and I’m working on it.

If you could sum up your outlook on life in one statement, what would it be?
Fall seven times. Get up eight times. I know, it’s another eye roll moment but that’s about it. I try, I fail, I forgive myself for failing and I try again.

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