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This summer marks ten years since I was diagnosed with polycystic ovarian syndrome (PCOS), and lately I’ve been thinking a lot about my feelings and experiences in those initial days, weeks, and months following my diagnosis.

Hindsight is of course 20/20, and I wish I could talk to my former self to advise and assure the anxious girl who’d just had her whole world turned upside down.

While I can’t go back in time to give that girl the advice she really needed, I might act as a support for the one in ten women who are diagnosed with PCOS at some point in their lives. I hope that by sharing some reflections from my own journey, I can make the experience of a new diagnosis a little bit easier for someone else!

This is what I’d want to tell my younger self.

Hey girl!

I want to just start by saying that you’re going to be okay. This is a lot to take in, and having PCOS isn’t going to be easy, but keep these thoughts in mind as you navigate this new journey, and you’ll find your way.

This is your official go-ahead to really feel your feelings, as I know this diagnosis is coming to you as a bit of a shock. I mean you’ve never even heard of PCOS before, and all of a sudden you’ve been given a brochure about it, explaining that you might struggle to have children, and have a higher risk of developing diabetes, heart conditions, and ovarian cancer. PCOS might not be putting your life in danger, but it’s definitely going to make it harder, and some of the potential complications are scary.

You’re also being faced with some new and unexpected challenges that include drastic changes to your appearance and energy levels, and a very irregular period. These are problems that most of your friends and family members don’t have to deal with, and that’s going to feel unfair and lonely at times.

You’re allowed to be annoyed that you have to deal with your new chronic symptoms, but don’t dwell on those negative feelings too much because focusing on the things you can’t change will hold you back from moving forward and making adjustments that improve your quality of life.

Your mom will always offer to go to your doctor’s appointments because she wants to support you, but she can’t speak for you as well as you can for yourself. You know your body best. You know what you’re feeling, and you’re the only person who can describe to your doctor what you want and need out of your medical care.

Along those lines, you’re allowed to say when something isn’t working for you. Your doctors aren’t always going to be a good fit, and the medications that they prescribe aren’t always going to help you. Ask to switch to the female gynecologist if it makes you feel more comfortable, and inquire about alternative medications that don’t make you light-headed or nauseous! Don’t be afraid to try things out because you shouldn’t have to settle for ‘good enough’ if better exists.

Listen; we all make mistakes, but waiting six months to see your doctor after you stopped getting your period was not a girl-boss move. I know that you made that decision because you were afraid to find out why you stopped menstruating, but avoiding your problems isn’t going to make them go away, in fact, it might make them worse.

Take charge and be accountable for your health by tracking your cycles and symptoms. All you need is a journal to record your mood and physical symptoms. There are even apps that can help with this! Some of them were specifically designed for women with PCOS. Future you uses Clue because it allows you to keep a calendar of your menstrual cycle, as well as the symptoms that you notice throughout the month.

Not everyone who has PCOS gains weight and develops hormonal acne, but you do. As a result of this, you’re going to get A LOT of unsolicited advice from unqualified people who feel entitled to tell you how you should eat, exercise, and generally exist, all in the name of ‘wanting what’s best for you’. Some of these comments are going to hurt your feelings and stay with you for years. Most people really do mean well, but at the end of the day, it isn’t their intentions that you’ll remember.

If someone says something to you that feels out of bounds, you can politely tell them that while you appreciate their concern, your doctors have already given you advice based on their assessments of your diagnostic tests and medical history.

If your boundaries continue to be pushed, I’m giving you permission to tell them to mind their own business.

I know how lonely you feel right now, but PCOS isn’t your dirty little secret. I guarantee that talking about it with your friends and family will open the doors to a community of women who you can relate to. You’ll be surprised to learn just how many women in your life also have this chronic condition, and some of them will even have useful advice for you about management strategies that you could try.

I also suggest discussing this new diagnosis with people who don’t have PCOS. Your loved ones want to be there for you, and even though you don’t know a lot about it yet, you’re the resident PCOS expert in many of your circles. Share what you learn and how you feel with the people who love you so they can understand and support you better.

The last 12 months of your life have been stressful, and it’s likely contributed to the hormonal imbalances that fuel your PCOS symptoms. Do yourself the service of reducing some of that stress. Pour into yourself and find a hobby that calms you down. Take up swimming again, start gardening, journal, and write those jokes that you’ve been meaning to flesh out. You‘ll sleep better, you‘ll procrastinate less, and you’ll be more resilient in the face of future stressors.

On the topic of stress, DO NOT make up imaginary scenarios about your fertility and the quality of your eggs! PCOS may affect your fertility, but see your doctor instead of jumping to conclusions, you silly goose. The sooner you suss out the situation, the sooner you and your provider can take any actions needed to make sure you can achieve your future goal of being a parent. And whether you end up conceiving on your own, with help, or not at all, you can be a mother.

You are no less of a woman because you’re holding onto some extra weight, or because you have dark rings around your neck, or because little hairs have taken up residence on your chin while the ones on your scalp seem to be thinning. And contrary to how you feel most days when you get out of bed, you’re not a hideous monster that shouldn’t be seen.

Go outside, and make friends. Live. Future you really regrets letting a negative body image get in the way of having a good time. Don‘t waste your twenties on insecurity. Don‘t waste any part of your life on insecurity, as a matter of fact. Love yourself, because you’re worth it. Even if you’re not crazy about the way you look right now, you’re more than your appearance, and you‘ll be likelier to sustain healthy lifestyle changes when you’re kind to yourself.

Good news babe, your period eventually “comes back”! After years of taking birth control to ensure that you menstruate every month, you decide to switch things up and start using a supplement called Inositol to help you regulate your cycle.

You’ll spend a lot of time over the next few years trying to take a holistic approach to managing your PCOS (we love to see it!). In addition to changes to your diet, exercise, and medications, you’ll try a variety of over-the-counter remedies.

Vitamins and supplements can be very helpful to women with PCOS, but be discerning. Not every product you see advertised on social media will help to minimize facial hair growth or balance your blood sugar. And the supplements that are put out by different brands can really differ in their formulation.

Try to find products with specific brands that are supported by medical professionals. If you do buy a product that doesn’t seem to help, don’t fret! Our bodies are all different, and something that works for someone else may not always work for you. Just make a note of it and keep it moving.

1200 calories a day will not sustain a woman of your height and weight. You might see messaging online that tells you otherwise, but don’t listen!

Eat well and move your body in ways that make you feel good. It was shocking to find that you’d put on some weight over a suspiciously short period of time, but a restrictive diet (for you) is not the solution here.

Also, try not to focus on how much you’re eating and think about what it is that you’re putting into your body. Nourish yourself and think about the ways that you can add whole foods to your diet that will give you energy!

Here’s one last piece of advice. PCOS is a chronic condition, which means that there is no cure and you‘ll have it for the rest of your life. So don’t go overboard trying to ‘fix’ it.

This is a marathon, not a sprint. If you try all of the exercises, diets, medications, and supplements that you can think of to ‘reverse’ your PCOS, you’ll tire yourself out and become frustrated if things don’t change immediately.

Having PCOS means that you might have to take medications at various points in your life, but the best thing you can do for yourself is to think about how you can make sustainable changes to your lifestyle. 

Start with small changes. See if they improve your life. Then add onto your habits.

I often wish I could share these revelations with my former self because there simply were not enough women talking about their experiences of navigating PCOS when I was first diagnosed.

I try not to get caught up in ‘what-ifs’, but I do think that having more PCOS ‘role models’ to look up to could have helped me to make more effective choices from the outset.

So, in the spirit of empowering ourselves, I want to put out a call to action; if you have PCOS, talk about your experience- whether with your friends and family or even with us! And if you’re not ready to share your story, share this blog post!

PCOS is one of the most common conditions to affect reproductive-aged women, and it’s about so much more than just the symptoms that it brings on. So let’s inform ourselves and create that community that we all need and want!

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