Polycystic ovary syndrome (PCOS) may sound like a condition linked to large ovarian cysts, but it’s actually a hormonal disorder. Instead of causing cysts, PCOS leads to irregular levels of reproductive hormones, resulting in a range of symptoms such as hirsutism (excessive hair growth), acne, muscle weakness, depression, anxiety, high cholesterol, insulin resistance, and even diabetes. However, irregular periods are often the first noticeable sign.
In people with PCOS, the ovaries may contain multiple follicles as the body attempts to ovulate, giving the ovaries a “string of pearls” appearance on an ultrasound—hence the name polycystic. PCOS is diagnosed through blood tests or ultrasound, with three main criteria: irregular periods, elevated androgen levels, and the presence of polycystic ovaries. Only two of these criteria are required for a PCOS diagnosis.
What to Do After a PCOS Diagnosis
As someone who has personally dealt with PCOS, I understand how overwhelming it can be. After years of a seemingly regular menstrual cycle, being told I had a hormonal imbalance left me feeling confused, isolated, and unsure of what to do next. I found myself asking, “Why are these symptoms happening now?”
Unfortunately, my first experience with an OB/GYN was dismissive. I was simply given birth control to “balance my hormones” and told we’d address other concerns when I wanted to have children. This response is, sadly, quite common for those diagnosed with PCOS.
While fertility is a significant concern for many, there’s so much more to PCOS than reproductive issues. My symptoms, like irregular periods, constant hunger, cravings for carbs, and weight gain, were far more pressing. Over the past two years, I’ve learned ways to advocate for myself, and here are some steps to help you do the same.
1. Find a Doctor Who Listens and Makes You Feel Heard
This is crucial. Finding a healthcare provider who listens and takes your concerns seriously can be a challenge, as many people with PCOS report that their symptoms are reduced to fertility concerns alone. Physicians often fail to address the broader spectrum of PCOS symptoms.
Luckily, I found a new OB/GYN who introduced me to Metformin, a medication that helps manage insulin resistance and carbohydrate metabolism. It significantly reduced my constant hunger and carb cravings. Having a doctor who doesn’t dismiss my pain and concerns—like when I feared I had an ovarian cyst—has been a relief. While the focus still tends to drift back to weight loss, which was caused by PCOS in the first place, I’m grateful for a more supportive experience.
If you’re navigating this journey, I hope you find a body-positive doctor, perhaps one who embraces the Health at Every Size (HAES) philosophy. Until then, one thing I found helpful was requesting not to be weighed at doctor visits, as the number on the scale often said little about my overall health and negatively impacted my mental well-being.
2. Advocate for Yourself When You Need Tests
There have been times when I experienced pain in my lower abdomen and suspected a ruptured ovarian cyst. Though tests didn’t reveal the cause, having a doctor who was willing to investigate provided peace of mind. Being assertive in your healthcare is essential. Ask for tests when needed, and if a doctor refuses, request they note that in your medical file.
Advocating for your health can involve many things—asking for tests, tracking your symptoms, and speaking up for what you need. I still want to know my hormone levels, as I continue to experience hunger and dizziness. Advocating for yourself is a key part of managing PCOS.
3. Connect with Others Who Have PCOS
It can be incredibly comforting to connect with others who share the same experience. When I first opened up about my diagnosis, I was surprised by how many friends revealed that they too had PCOS or knew someone close to them with the condition. Support groups and online communities are also valuable spaces for learning and sharing advice, especially on challenging days when symptoms feel unmanageable.
4. Curate a Body-Positive Social Media Feed
Unfortunately, many healthcare providers, like my OB/GYN, reduce PCOS management to weight loss. This perspective can feel dismissive and unhelpful, especially since PCOS causes weight gain rather than being caused by it. Although I was advised to cut carbs, doing so seemed nearly impossible due to my intense cravings. Remember, PCOS is not your fault, and simplistic solutions like weight loss don’t address the full picture.
Surrounding yourself with body-positive messages and finding support from people who understand the complexities of PCOS can make a world of difference.
