3 Lessons I've Learned Living With PCOS

From the moment I had my first period I struggled with symptoms of polycystic ovarian syndrome (PCOS), yet it took years of seeing different gynecologists and countless tests to ever get a diagnosis. The emotional and physical strain of it began to take over my life. No one believed me, and no one cared — at least that’s how it felt. I have since met so many women with similar stories to mine and thought I would share some lessons I learned along the way that I wish I had known at the start of my journey.

  1. 1. Don't Hide From the Details

    Journaling

    One thing I had to get very comfortable doing, very quickly, was being excruciatingly honest with doctors about what was going on down there. As a young teen, it's intimidating to discuss the horror of blood clots, irregular bleeding, discharge, etc., that comes with PCOS when you have hardly had time to establish what is ‘normal’ for your body. The truth is that being able to be open and honest about your body and how you feel is quite empowering. For me, it wasn’t until I began to gain confidence as a patient that I began to get answers. On my own, I documented every graphic detail of the symptoms I experienced to keep track of them for my next appointments. Unveiling the whole truth is the best chance you’ll have at receiving the help you need to better your health and quality of life, so you want to make sure you have a way to remember it all. With that being said, finding a doctor that you feel validates you and listens will extraordinarily lighten the burden in this process. Unfortunately, for many women, it can take several tries to find the right fit, but once you do you can get the help you deserve.

  2. 2. Take Care Of Your Mental Health Too

    I won’t sugarcoat it; this journey is hard. Like, really hard. PCOS in and of itself is painful and scary, but it can also cause hormonal imbalances that can be very mentally taxing at times. Allow the people in your life to understand you during these times. Allow others to help you even if you feel like no one could ever understand what you’re going through. The truth is that they don’t, but you will be grateful in the end to have a support system because the process to effective management is long, and it is difficult. Not only can PCOS directly impact your mental health, but the course of diagnosis and management can also be unbelievably draining. Personally, I felt like I was giving my entire life to PCOS, especially before I had a diagnosis. Oftentimes it's challenging to get a diagnosis, and it takes a lot of time for many women. With all the doctor’s visits and frequent testing, this extended time can make you feel hopeless. My advice to you is to prioritize your mental health. Surround yourself with the positivity you need and find outlets for the stress and anxiety that come with the suffering and uncertainty. This is your journey; it's all about you. Make sure you make it feel that way mentally. You will make it through this.

  3. 3. You Are Not Alone

    Four people holding each other in shades of purple

    My last and most important lesson. It sounds cliché, I know, but if you have struggled with this or anything like it, I'm willing to bet that at one time or another you felt as though you were the only person in the entire world with these battles. For me, it was the constant dismissal of my problems by doctors that made me question if there was really an issue or if this was just how everyone’s experience was. It was challenging, I was young, I was scared, and I had no idea what PCOS was or how to feel comfortable being assertive at appointments. I felt this way until I met someone like me. Then I discovered so many useful resources on social media where women shared their stories and advice. Now I have successfully made it to PCOS TikTok (goals, I know) and even that plays its role in making me feel a part of a community rather than going through life unsure of myself. These outlets are also a great way to learn from others, and inspire your personal education and research. Being a knowledgeable patient is crucial. No one is going to care or advocate more for your body and wellbeing than you, so you want to have a strong leg to stand on. Just remember, you deserve to feel healthy, don't give up on that.

There is an immeasurable amount of uncertainty faced by those affected by PCOS. Not everyone’s experience is going to be the same, and personal symptom management can seem to be everchanging. Even with proper management, PCOS will always have an impact on your life, but it doesn’t have to consume you. There are so many disparities in women’s healthcare (including more than just PCOS patients) that need to be corrected, but until then, find your voice and get the care you are entitled to.