PCOS and Me

I've just learned, through the fount of all knowledge that is TikTok, that September is PCOS awareness month. So I, at the very end of the month, thought it only right that I make people aware.

Trigger warning: this posts touches (very lightly) on disordered eating habits.

What Is It?

PCOS, as explained by the NHS, "is a condition that affects how the ovaries work" [1]. In order to be diagnosed with PCOS, you have to present with at least two of the three following symptoms:

• Irregular periods - caused by a lack of ovulation and an unhealthy hormone cycle

• Excess androgen – high levels of "male" hormones in your body, which may cause physical signs such as excess facial or body hair

• Polycystic ovaries – your ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs

You may look at this list and think 'what is she complaining about? She has fewer periods than the average menstruating person (which most would be jealous of), maybe has to shave more often than she would like, and has weird ovaries... get over it'. However, these are not the only symptoms of PCOS and, thanks to an underfunded NHS and worldwide systemic misogyny leading to 'women's issues' being overlooked and under-researched, we have to have an awareness month in order to be taken seriously.

Some of my symptoms are:

• Chronic fatigue, making every day a constant battle to get out of bed and actually do normal everyday activities like work, clean, shower, see people etc. (as if being autistic doesn't make that hard enough already).

• Hormonal acne which, at the age of 24, I was really hoping to be rid of by now.

• Food sensitivities (gluten and dairy) that lead to painful bloating and more fatigue, acne etc.

• Depression.

• Anxiety.

• Brain fog.

• High cortisol levels, which comes with a whole host of its own issues such bloating and mood swings.

• Unexplained weight gain that is nearly impossible to lose, even if I literally starve myself (trust me, I've tried).

• Hair loss leading to even more self-esteem issues (might just buy a wig at this point).

• Constant mood swings, especially if my period is late, which I'm sure make me a real joy to be around.

• Stiff and achey joints due to inflammation.

• Random cramps even though I'm not bleeding and when I am bleeding, the cramps can be completely debilitating and leave me bed-ridden for days.

• Insomnia, which really doesn't help the fatigue.

• Increased risk of diabetes and heart disease.

This is not an exhaustive list, but gives you a good insight into what I, and millions of others, deal with. PCOS is not just a fertility issue, despite what I was told at 13. It affects me, and those around me, every single day.

Over the years, I've been told by several people that I've opened up to that they wished they didn't have a period every month and, whilst I do know what they mean, it is quite an insensitive thing to say. When my symptoms are being managed, I do have regular periods. My cycle is still a lot longer than average (40 - 50 days for me), but the internal clock does tick, albeit a tad slower than the usual. The issue with PCOS though is that, despite my absolute best efforts, my symptoms are not always managed effectively. This eventually leads to missed periods and, when the gates eventually do open, it often comes with debilitating cramps. This, in turn, leads to writhing on the floor, screaming and moaning in pain, dizziness and fainting, nausea and vomiting and an intense and almost constant anxiety of leaving the house for fear of becoming a public spectacle when my uterus does finally decide it wants to shed because my cycle is so unpredictable that it could happen at literally any time.

The good thing (if there is one) about having such intense hormones, is that I can usually tell when my period is about to start, and plan accordingly. However, this is something I've had to learn over the last 10 years, and is something that I still sometimes get it wrong.

Okay... But What IS It?

As mentioned, it is an extremely under-researched condition, so nobody really knows what causes it. However, what seems to be the answer right now is that it's a result of genetic and/or environmental factors. At the moment, the thought is that there are three types (or causes) of PCOS:

• Genetic - pretty self-explanatory. If your grandma or mum had PCOS, or 'reproductive issues' in general, you're more likely to have it.

• Insulin-resistant - your body acts in a similar way to someone with Type 2 diabetes (from my understanding). It has trouble absorbing and using insulin, which is needed to regulate blood sugar etc. When your cells can’t use insulin properly, because they are resistant to it, the body’s demand for insulin increases. The pancreas makes more insulin to compensate and ends up overcompensating leading to excess insulin in the body with nowhere for it to go. Extra insulin triggers the ovaries to produce more male hormones, and stops the production of other hormones that are needed, the ovaries stop releasing eggs and trouble begins. [2]

• Inflammatory - similar to insulin resistance, your body is too inflamed to be able to produce the hormones necessary for a healthy cycle. This inflammation can be caused by many things such as unknown food sensitivity, excess weight, chronic stress leading to high cortisol levels, and many other things.

I believe I have a combination of all three, which makes it a really fun guessing game in terms of how to manage it because, despite what some PCOS influencers will tell you, it cannot be permanently cured, the symptoms can merely be managed, and despite best efforts, those management strategies will sometimes just stop working for seemingly no reason at all. This is not the case for everyone. Some people just change their diet, exercise regularly and the symptoms magically dissolve. Others are like me where one day, week or month, things seem to be working and then suddenly stop.

How Do You Manage It?

Management strategies vary from person to person and mine vary from day to day, depending on how much energy I have available to me. My strategies have evolved over the years and will likely continue to do so. When I was first diagnosed, I was put on the combined pill and told to lose weight (even though I had a completely healthy body weight) and come back when I wanted to get pregnant. Only after countless hours of research, and years of trial and error, have I managed to scrape together somewhat of a routine and finally come off the pill as it was making me extremely depressed.

I will take you through my perfect day (which is an extremely rare occurrence):

7:00 - wake up

7:15 - get out of bed, do morning stretches to get my body moving, help with achey joints and reduce stress

7:45 - eat a protein-heavy breakfast to help regulate my blood sugar throughout the rest of the day and take morning supplements. Please consult your doctor before taking any supplements as you may or may not be deficient in certain vitamins. Everyone is different.

8:00 - slow, weighted exercises to help with insulin resistance, but not spike cortisol levels (pilates is my favourite for this)

8:30 - dry brush skin to help with circulation and lymphatic drainage, then shower

8:45 - skin and hair care

9:00 - work (from home)

13:00 - protein and fibre-rich lunch, get up and move

17:00 - finish work, do some stretches or exercise to wake myself up again

18:00 - dinner, supplements and a sweet treat

18:30 - relax for the evening, do a hobby, speak to people etc. to help with depression, anxiety and cortisol

21:00 - read to relax and no more phone time to help my brain fall asleep faster

22:00 - bed

Again, this is not my every day, this is what I aim (and usually fail) to achieve.

For over a decade now, I have had Polycystic Ovarian Syndrome. Only now am I starting to really understand it and, even then, it is an illness shrouded in mystery, whose symptoms and flare-ups, for me, can be completely unpredictable. It can be a very lonely, very isolating illness and I want anyone reading this who may be going through it too to know that you are not alone. It is scary and life-changing in many ways and it can feel like there is no hope and no point even trying.

Try.

Try a keto diet and hate it because life is no fun without carbs, nor is it healthy or sustainable because your brain literally relies on them to function. Try going gluten and dairy free and realise that you've actually been intolerant to them all along, or realise that you can't live without bread and cheese. Try the gym and later realise you hate that kind of environment. Try HIIT and realise it's only making you feel worse because it's spiking your cortisol. Try exercising at home with nothing but a Youtube video and a dream. Try Just Dance because exercise doesn't have to be boring and any movement is better than none at all. Try going for walks and doing slow, gentle exercises with small weights. Try journaling. Try writing a blog. Try anything and everything (within healthy limits) and find what works for you.

Find what helps you feel good and is genuinely sustainable. The goal is to live a long, happy, healthy life. Don't do anything that is going to counteract that. Don't do what I did and stop eating altogether, you'll only end up more miserable than before and it won't work anyway. Go slowly and be gentle with yourself. If there's one thing that this illness taught me, it's that you have to be your own biggest advocate, nobody can do it for you, and nobody will listen to you otherwise. Be your own best friend and be kind to yourself in a world that can be so mean and quick to judge. You will have days that are much better than others, and you will have days that are much worse. You need to show up for yourself because you can have the best support system in the world but at the end of the day, only you can make the difference.

You are worth the effort, you are worth the understanding, you are worth the extra money that the gluten and dairy-free food and vitamins costs.

You are worthy of loving yourself, your body and your life.

Try.

References:

1 - NHS https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/

2 - Healthline https://www.healthline.com/health/polycystic-ovary-disease#causes