*** This guest piece is by the beautiful Shelby, who has written so candidly about her diagnosis with PCOS and her journey afterwards. She is fiercely pushing against the stigma surrounding women’s bodies and the struggles that sometimes come with it - and that there is nothing shameful about it. We are so proud to share a piece that is so incredibly honest, and if you are looking for a sign to look after your body (and your lady bits) then let Shelby’s story be it.
Shit You Should Care About… Polycystic Ovarian Syndrome (PCOS)
I have tried countless times to write about my Polycystic Ovarian Syndrome but usually, I end up confused and frustrated as I struggle to clearly describe what it is. It’s very personal talking about my malfunctioning ovaries and my slim chances of having children, and although the idea of kids is far from my 21-year-old mind, I can’t help but think about it often.
I was diagnosed with PCOS in February 2018 and this past year has been a turbulent journey to find ways to manage the symptoms effectively.
What is PCOS
Polycystic ovarian syndrome is a condition that affects women’s hormone levels. During every menstrual cycle my ovaries develop cysts. The pain when they develop feels sharp - as if a knife has stabbed me straight through the ovary - or like my ovaries are twisting around themselves. I usually end up in bed curled up unable to move. I hate sounding like a drama queen but for a long time I wasn’t upfront about the burden this diagnosis has caused me. Not every woman with PCOS experiences every symptom but the range of them include:
Insulin resistance; If insulin levels in the blood are too high, the ovaries react by producing more male hormones.
Higher testosterone and androgen levels leading to excess hair growth or male pattern baldness.
Extreme fatigue (napping everyday like a feline was normal for me).
Difficulty to lose weight no matter how hard you work out and eat right.
Pleasant symptoms for a young woman entering her 20’s…
The cause or origin of PCOS is not yet fully understood. Some say it is genetics while others claim it is insulin resistance. Growing up I’d never had a doctor tell me I was close to being pre-diabetic or type 2 diabetic. I was an athlete all throughout high school, considered myself physically fit, and I ate well. Although no women on either side of my family have had PCOS, there is endometriosis in the family.
It was a bitter sweet moment when I was diagnosed with PCOS. My boyfriend at the time and I had unprotected sex, so I immediately went for the morning-after-pill (Plan B). Obviously, I was ashamed to be in that position, but, if that hadn’t happened, I’d still be living ignorant to my PCOS and these unexplained symptoms! When the nurse asked the standard questions like, “when was your last period?” “When are you due for your next cycle?” I couldn’t give her straight forward answers. Since my first period at 13 years old, I had never had a regular cycle. Sometimes I would menstruate two months in a row and then not see anything for four months. My periods came as either two weeks of spotting or three days of extreme blood loss making it near impossible to leave the house. It never concerned me as many friends told me they also had irregular cycles, or they were on birth control and managing it themselves. The nurse administering Plan B for me sternly recommended I see my doctor about this. I didn’t think much of it for about a month until my next period came, and I questioned; “maybe this is more painful than it should be?” I had been putting up with painful premenstrual symptoms for years, but thought it was all part of becoming a child-bearing woman. Uterus cramps are common, but having boobs SO tender you can’t wear your seatbelt across your chest is extreme. But who hasn’t heard a woman complain about periods before though, right?
In February 2018 my doctor organised an internal ultrasound and I was diagnosed. The scan showed 13 cysts on the wall of my left ovary and 11 on my right. Cysts are hard to describe so here is the medical definition: “a membranous sac or cavity of abnormal character in the body, containing fluid.” When they develop, they range in size from a green pea to a damn golf ball, so they can take up a decent amount of space in a rather small organ, thus explains the intense pain every month.
After the diagnoses I went with my millennial instinct and google searched what PCOS was all about. The main points I took from my hasty ten-minute search were:
Women with PCOS are more likely to suffer from depression.
Likely to cause miscarriages if you fall pregnant.
Higher risk of developing Endometrial cancer.
Very common in female cats (this explains the desperate need to nap almost twice a day.)
Another month later, after I had moved cities for my second semester at university, I visited the medical centre and put action towards managing my PCOS. “Managing” is the key word that often upsets me, as this isn’t curable, and I will have these symptoms and painful cysts for the rest of my life. However, there are ways to be comfortable and I’m on a mad mission to find them! My comic of a boyfriend at the time made light of the situation by saying, “are your sisters back in town?” when the pains had me grumpy and curled up in bed. He taught me how to find humour in any situation as it’s much better than having a cry, so I eventually found it funny.
My doctor put me on Metformin-HCL at the start of March. 500mg with breakfast and dinner. Metformin is used together with diet and exercise to help control blood sugar levels in adults with type-2 diabetes. For women with PCOS, we are more likely to be insulin resistant, meaning our pancreas produces too much insulin when we eat foods that cause it to spike, such as carbohydrates and sugars. When too much insulin is produced (no matter how much you work out) it becomes stored as excess fat. Metformin’s roll is to help your body use your insulin more effectively, therefore, balanced insulin production = less fat storing.
I was extremely hesitant to start taking pharmaceutical medication due to my experience with anti-anxieties/depressants throughout my teens. I quit taking anti-depressants in 2016 after I’d been through ten months of mindfulness counselling and then travelling overseas. I mention traveling as it was a huge mission where I was mostly alone and learned how to protect my mental health “on the go” if you will. I was curious to go down a natural path for PCOS, but what stopped me was not knowing where to start or if it was even possible. Unfortunately, my GP wasn’t interested in helping me find that path either…
Metformin seriously altered my reality in such a way, that when I reflect on it, I was nowhere near as healthy as I am now. I was given a three-month prescription and thought, “just try it, you might lose weight.” Let’s be honest, any woman will always have in the back of her mind to lose an extra kg or what have you, (Or not! You may be stronger than I) but I had struggled with a vicious cycle of restrictive to binge eating disorders since I was 17. Losing weight ultimately became my focus. After one month on 1000mg I was nauseas with every dose and was beginning to completely lose my appetite. After three months I had lost over 8kgs and had multiple stomach ulcers from taking the medication on an empty stomach (not advised at all by my GP so I have learnt from that mistake!).
There were positives to Metformin - balancing my insulin production. When I could, I was able to eat carbohydrates without retaining excess fat or the awful feelings after an insulin spike (similar to a sugar crash). Garlic bread came back into my life quick-smart. At the time I wasn’t appreciative of this, but the best part of metformin was discovering my menstrual cycle was a bang on 28 day cycle every month for the first time in eight years. I cannot explain how bloody appreciative I am for a regular cycle. Being an outdoor adventurer and camping most weekends, meant a regular cycle was extremely helpful for being prepared.
Emotional impact of PCOS
When I was first diagnosed, I was in a new relationship and I admit that my PCOS was a huge strain on the two of us. It was extremely hard to explain why I felt depressed some days or why I didn’t want to eat. I wanted so desperately to say that I hated and feared my PCOS and what Metformin was doing to my body and mind. However, when I found myself complaining too much or saying the same bullshit over and over again, I gave up trying to explain myself causing a lot of miscommunication between us. On top of not knowing how or even wanting to explain myself, I went down a dark spiral into another restrictive eating disorder and obsession with exercise. Losing 8kgs in two and a half months is a massive shock to the body and hugely impacted my mental state. Every time I saw an old friend I hadn’t seen in some months, I was told “You’ve lost weight, you look fantastic!!” To a person with an ED that was like pouring diesel on a bonfire. The fire being over exercising and living off baby-food. The only thing my stomach could handle, and the only calories my mind would allow me.
The whole idea of PCOS being about cysts and a hormone imbalance was far from my mind and the only goal I was out to achieve was losing more weight each month. Forget university and any other responsibilities I had, I was totally consumed by the calories on my plate and numbers on my scale. When I stopped noticing weight loss after six months, my attitude became severely obsessed. I started taking extra doses of metformin, and bulimic episodes were an everyday routine. *Please remember this is deeply personal and I’m shaking in my boots revealing all this*. I was keeping secrets from everyone around me and my temper was short. You were walking on eggshells talking to me. I’ve come to understand that it is an incredible responsibility to take care of someone struggling with an eating disorder, or any mental health issue and no one should feel obliged to take on that responsibility if it is damaging themselves in the process.
At my most unhealthy moments I was blind to see just how unhealthy my habits had become. I knew I didn’t feel like myself, but I had so many obstacles finding my way back to the person I was prior to my diagnoses, however, the obstacles were all in my own mind. Before any visual notice of my weight loss, my eating disorder was only visible through temperamental emotions. Frustrated by food forced upon me, or not being able to work out. I attacked a lot of people who were only trying to help. After my weight and BMI dropped to an unhealthy range my mental struggle become physically visible, the people trying to help me continued but as their words fell on deaf ears and my ignorance started to show, relationships suffered.
I was also coming up to university exams and could not handle the pressure. I enjoyed uni a lot, my grades were above average on assignments, but come exams, I utterly caked it. The idea of stuffing all that knowledge in your head to spit out not even half of what you’ve memorised in three hours was terrifying. I know there are a lot of recourses out there for me to overcome that anxiety, but when my mind was so focused on exercise, food intake and the falling apart of my relationship, I had no self-discipline surrounding my studies.
Enough of the past, how about now?
That was seven months ago. My relationship ended and I dropped out of uni but just like the start of this whole fiasco I had a Plan B! I moved to Northland to start a horticulture apprenticeship and was focused on moving cities, working and strengthening my mental health. I was still taking Metformin, but it didn’t control my life like it had in the beginning. I was even missing doses and not particularly caring. I put on 4kgs and the emotional impact that had is a story for another day, but it was what kickstarted my motivation to find an alternate route to managing my PCOS.
A workmate told me about a naturopath his partner visits, so I did the research and my first appointment was beyond what I was expecting. We talked for two hours and she went in deeper than any GP had by asking me about my personal symptoms. She was able to explain to me the hormone imbalance specific to me as it is different for every woman with PCOS. I now have multiple supplements and a concoction of herbal extracts that I take twice a day and have been off Metformin for over two months now.
Admittedly, I cannot say that the supplements are the be-all and end-all to my PCOS symptoms but knowing I am healing my body with natural antidotes has lifted my mood, improved my sleep and hugely reduced depression and anxiety. Result!
I tend to think about my PCOS every day. Usually I’m asking myself questions about it that I’ll google later (of course finding reliable sources, uni did teach me something). Some days it’s a real fucking pity party. I can get sick and tired of seeing P C O S all over my computer with ten tabs open of new and old medical journal articles. I’m no med student either so reading medical journals was difficult due to the language they use that I’ve never studied, but if it weren’t for this diagnosis, I wouldn’t have learnt all that I know now!
The point of this article is essentially to get the word out on PCOS. 1 in 10 women live with this syndrome and many never find out until they’re trying to get pregnant. From what I’ve experienced in the past year, I can safely say it would be 10 times the level of frustration when you’ve got a goal and your biological clock ticking. I would also absolutely LOVE to hear from anyone who also suffers from PCOS and what guidelines they’ve been advised to use or just to start up a yarn with each other and compare notes! Please don’t ignore painful period symptoms.
NB: Below I’ve added in some important resources that I often refer to and positive tips for mentally handling PCOS. I hope they help someone else too.
Be open about your illness
Having an invisible illness can be frustrating at times, especially around new people and when you’ve explained your shit over and over again sometimes it’s easier to pretend it’s not there. In my opinion, by hiding what you’re going through often leads to feeling completely alone and defeated. You never know, someone might tell you they have it too or they know someone who does. What’s the worst that could happen by being honest about your illness? No one is going to tell you to grow a pair when it comes to health problems you are still learning to live with.
Food plan for PCOS
I won’t go into the depths of why following a specific diet for PCOS is important as I have found a reliable source and I can’t word it any better than they have on this website!
These aren’t just meal plans, but they explain WHY each item is on that plate and how it works for your body with your condition.
The main guideline women with PCOS should follow are: Dairy free, Gluten free and low GI. Let me tell you, it’s not cheap to eat that way but 100% worth it! Here is more information surrounding dairy and PCOS as it is a debated subject. To completely avoid or eat in moderation?
Supplements for PCOS
I’ve tried numerous over-the-counter natural supplements for my symptoms and below is what my Naturopath has prescribed for me:
Chromex (Chromium and Ala Complex) - Helps to metabolise carbohydrates, fat and protein. Similar to that of metformin but not nearly as strong.
Inositol – Lowers high testosterone and androgen levels.
Zinc Picolinate – A mineral primarily used by the bodies metabolic system.
Active 4.3 – Essentially a tonne of Calcium and Iron (this one is for my symptoms specifically).
Active 3.2 – Magnesium and Potassium to help with skin issues and respiratory infections (again, specific for myself).
It is so important to keep your fitness steady while having PCOS. It can lead you to feeling extremely sluggish and lethargic when approaching your period. Going to the gym or swimming (whatever you do) or even a light stroll down the road seriously helps with the intense bloating and water retention that occurs leading up to your period. Sweat it out! Responsibly!
It isn’t impossible to have a successful pregnancy even if you have PCOS. Not speaking from experience, although I have researched often enough. IVF (In vitro fertilisation) has been around since the late 70’s and results show it can be successful for women with PCOS along with following the recommended food plan. The best way to fall pregnant is by having a regular menstrual cycle and balancing those out of line hormones. To do so, I strongly believe following the recommended food plan for PCOS is the best options, along with IVF.
Tarryn Poulton is the woman I look up to when it comes to PCOS advice. Her website has absolutely everything you need regarding resources and information about this topic.
Banner image from instagram @takearecess