What is PCOS?

Polycystic ovary syndrome (PCOS), is a bit of a misnomer. Rather than causing large ovarian cysts, as the name might suggest, it is typically more of a hormonal disorder that causes irregular reproductive hormone levels. These hormonal imbalances can lead to a wide array of symptoms, like excessive hair growth (hirsutism), acne, muscle weakness, depression and anxiety, elevated cholesterol, insulin resistance, and eventually diabetes — but most often the first things people notice is irregular periods.

In the ovaries, there can be a dozen or so developing follicles as the body repeatedly tries to produce an ovulation. This makes the ovary look like a string of pearls on an ultrasound, and this is where the polycystic name comes from. PCOS is diagnosed with blood tests and/or an ultrasound. The three diagnostic criteria are abnormal periods, higher blood androgen levels, and polycystic ovaries on an ultrasound, though only two criteria need to be met for a PCOS diagnosis.

Where to Start after a PCOS Diagnosis

As someone who has a PCOS diagnosis, my heart is with you. I know firsthand that getting a PCOS diagnosis can be overwhelming. After more than ten years with a ‘normal’ menstrual cycle I felt confused, lost, and incredibly alone when I found out that I now had a hormonal disorder. My mind was swirling. Where did all these symptoms come from? And why now?

It didn’t help that my ob/gyn’s response was largely dismissive and not all that helpful. She basically said, “Here is some birth control pills to even out your hormones. We’ll worry more when you want to get pregnant.” I’ve since learned that this is an all-too-common response people get when receiving a PCOS diagnosis.

Though fertility is a valid concern for many people, there is so much more to PCOS than fertility considerations. For me, my symptoms were far more concerning: abnormal periods, intense hunger and carb cravings, dizziness, weight gain, etc. In the two years since I’ve had PCOS, I have learned of way to better help myself. Here are some places to start to better advocate for yourself.

Find a Doctor Who You Are Comfortable With and Who Makes You Feel Heard

That second part is huge. Finding a good doctor has been my biggest struggle with PCOS, as it is for so many. As previously mentioned, the unfortunate truth is that many people with PCOS share the common experience of their PCOS being reduced to the singular concerns about infertility. From what people share, it seems that few physicians are willing to address the other symptoms in any meaningful way, if at all.

For me, I have been fortunate enough to find a new OBGYN who is better than my first. My new OBGYN started me on a medication called Metformin, which helped with insulin resistance and processing carbohydrates. This has reduced my intense, often constant, hunger and carb cravings. It’s wonderful to have a care provider who isn’t dismissive and was willing to do an ultrasound when I was experiencing pain and was concerned I had a rupturing ovarian cyst. While this may seem like a given, this is no small thing in the gynecological healthcare world. Having symptoms dismissed as ‘normal’ period crams, or even gas, is not uncommon. Still, not everything is perfect. The conversations seem to constantly circle back to losing weight, despite the fact that PCOS was the cause of my weight gain.

My goal, and hope for you if you’re on this journey, is to one day find a more body positive, perhaps HAES (Health at Every Size) focused practitioner who listens and takes your concerns seriously. In the meantime, one tip I have found to be tremendously helpful is to ask to no longer be weighed when going to the doctor’s office. Personally, this single number says very little about my physical health and was detrimental to my mental health. If that’s you, too, this may a great thing to discuss at your next visit.

Ask For Tests When You Need Them

There have been several times that I had lower abdominal pain and thought it might be a rupturing ovarian cyst. Whatever the ailment, having a physician that listens and takes your concerns seriously is so important. For me, my doctor was willing to do ultrasounds — though it turned out not to be a rupturing cyst and we’ve never figured out the cause of the pain, I’m still glad we did the tests. Having the tests gave me peace of mind and ruled out one possibility.

Being assertive and your own advocate in your health care can take many forms. Asking for tests, requesting that their refusal to run tests be noted (if that’s the case), etc. Speaking from personal experience, being assertive and asking for what I need is a constant goal. I’d love to know my blood hormone levels again, since I still experience some intense hunger and dizziness. Note to both of us: A big part of having PCOS is self-advocating.

Find Others With PCOS Lived Experiences

Whether in-person or online, other people with PCOS exist and are out there looking for a way to be better connected and informed. As soon as I openly disclosed that I was diagnosed with PCOS, dozens of friends came forward to say they also have PCOS or know someone close to them with the disorder. There are countless PCOS support groups and online communities. All of this support can really help, especially on hard days when symptoms won’t let up. I’m still learning about PCOS from others, and that has been a huge help for me.

Make Your Social Media Body-Positive

Sadly my OBGYN isn’t alone in thinking losing weight can solve PCOS. This is an overly simplified view of this disorder. He also says I should cut carbs out of my diet, despite the fact that I have intense carb cravings, which makes this simply unrealistic. No to mention that PCOS caused my weight gain, not the other way around. Having PCOS isn’t my fault, as this narrow view of PCOS treatment may imply.

Read that again: PCOS isn’t your fault.

Several factors, including genetics, play a role in causing PCOS. While I search for a new doctor, I have done my best to make my social media body-positive. Accounts like @pcos.nutritionist (from Sam, a registered dietitian) reinforce the idea of gentle nutrition, which means rather than removing carbs, which your body still needs to function, adding protein and fats and fiber, to feel better and fuller throughout the day. Adding instead of restricting is a much healthier approach to having a good relationship with food. @pcos.positivity (from Kirsten, a PCOS Nutritionist) is also a wonderful account. I definitely recommend giving both of these accounts a follow!