By: Emma Bixler, SWHR Development Manager
During Polycystic Ovary Syndrome (PCOS) Awareness Month this September, I am sharing my PCOS journey, lessons I learned, and my hopes for improving care outcomes for women impacted. PCOS is a common hormone disorder characterized by high levels of androgen hormone. In women with PCOS, eggs do not fully mature, and many remain in the ovaries, surrounded by small fluid-filled sacs (or cysts); however, it is important to note that not all women with PCOS have cysts. The high androgen levels have also been associated with interfering in the development and release of these eggs. The cause of PCOS is unknown despite affecting 8-13% of reproductive age women worldwide. Symptoms and their severity vary from patient to patient, but common symptoms include irregular periods, excessive body hair, acne or oily skin, thinning hair, and weight gain.
Over 10 years ago, during the summer before my sophomore year of high school, I started to experience irregular periods, weight gain, and acne. I went to my pediatrician and with the help of my mom (who was my sounding board through all of it) shared everything that I was experiencing. I was so lucky that my pediatrician had recently read a study on PCOS and had the condition top of mind. After further discussion, we decided that I should have blood work done for more information.
After my blood work, I received an unofficial diagnosis of PCOS from my pediatrician. At that time, I was unable to receive an “official” diagnosis because my pediatrician did not feel he could give one due to knowledge level and wanted me to see an endocrinologist. However, I was told by my insurance that I did not qualify because I was under 18. It is important to note that this is not the case for all and was just my experience 10 years ago. My unofficial diagnosis started a 3.5-year period of limbo, being put on various medications and diets to try to manage my weight gain. These years were very hard – physically and mentally. Nothing was working, my period was very irregular, and I continued to gain weight quickly even while playing varsity sports. I was sent to see a youth gynecologist but did not find the conversations helpful.
When I was 18, I finally saw an endocrinologist and received my official diagnosis of PCOS. We started a new treatment plan, and I tried to remind myself I wouldn’t see a change overnight and needed to stay positive. Soon after, I also added a dermatologist to my care team and ended up on an acne medication that worked best for managing my PCOS. I continued to meet with my endocrinologist regularly to discuss other medications and lifestyle habits that settled my hormone levels and made me feel healthier. It was a slow progression, and I still had hard days, but I was finally feeling well again.
Today, I am still on medication and meet regularly with my endocrinologist to discuss my PCOS. My gynecologist and primary care physician are also part of my care team. I am continually learning how PCOS affects all aspects of my health: in high school, my hair largely stopped growing due to PCOS; I live with higher cholesterol and inflammation that I have to manage; and I stay informed on my increased risk of certain cancers and infertility. Even with these, I am healthier and happier than I have ever been.
My PCOS journey was hard and isn’t over yet, but I always welcome the opportunity to share my experience in hopes of helping someone along in theirs. When I look back, I have three big takeaways from my journey:
- One, I was incredibly lucky to have my pediatrician and endocrinologist listen to me, keep up with women’s health topics, and include me in decision-making for my health. Their commitment to patient-centered care was crucial to my success. This is not the case for everyone. If you do not feel heard or supported by your providers, don’t hesitate to reach out to a new provider or ask for a second opinion. You really must be your best advocate for your health. You know your body best – listen to it and speak up.
- Two, having someone in your corner who can listen, make lists, and attend appointments, help with treatment management is so important. I am so grateful to have had my mom supporting me through this journey. She did a lot of research on PCOS when I couldn’t, reminded me of details I may have forgotten, and just listened to me vent when things were hard. Find a family member or friend you can lean on for support, or even consider joining a women’s health or PCOS support group. You don’t have to go through this alone.
- Three, the PCOS treatments that may work for one individual won’t work for all of us. Part of the complexity of PCOS comes from how widely it presents and how frequently it remains undiagnosed. Everyone’s PCOS symptoms, diagnosis, and treatment will be different. And as you age, treatment needs might change again. Be open to trying different care strategies until you find the combination that is best for you.
I had a lot of luck and support in my PCOS journey, but I know there are crucial gaps in the current health care landscape that if addressed could ease the PCOS journey for all of us. I hope to one day see greater patient and provider education for PCOS; more research funding designated specifically for PCOS; and clearer treatment options for the condition. More accurate information about how PCOS presents and the comorbidities it impacts could help patients and providers alike more quickly diagnose the disease and begin treatment. Resources like SWHR’s PCOS fact sheet and webinar on shared decision-making are a great place to start. More funding for PCOS can help us find the cause and maybe one day a cure. In 2022 the NIH added PCOS as a research support line item. PCOS was allotted $9 million research dollars in 2022, $11 million in 2023 and is estimated to have $11 million in 2024. These contributions are each a step in the right direction, and I hope to continue to see an increase in research dollars not just at the NIH but across the federal research agencies and within private enterprises.
Finally, I hope that with greater education and more research, patients can be provided clearer treatment options. PCOS treatment is often approached as a game of trial and error; women are turned in different paths for medications, diets, and lifestyle habits, and it is complicated to weed through all the information to figure out what works. With more evidence-based information, we could provide women with clear treatment options that support both their mind and body.
With PCOS impacting up to 13% of women of reproductive age worldwide, we all likely know someone living with PCOS. I hope hearing my story – and hearing the stories of others or sharing your own – encourages us all to work towards creating better health outcomes for women with living PCOS, this September and all year long.
Do you have a women’s health story to share? Visit the SWHR Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.