September is PCOS (Polycystic ovarian syndrome) awareness month. 5 million Americans currency suffer from this syndrome. From the name, you can tell that PCOS probably means you have ovarian cysts — but that is not always true. What, really, is PCOS? The lack of knowledge and awareness on this subject is concerning, as many women do not even know they have it. I live with the condition and had to do my own extensive research on not only exactly what it is, but also which type(s) I have, what my symptoms mean and how to treat it.
At the age of 15, I began to have issues with my period, along with rapid unexplained weight gain. With no period for five months, I decided it was time to go to the doctor. I was expecting a physical assessment in order to see what was wrong, but instead, I was told that nothing was wrong, and I was put on birth control. My period came back, but symptoms still persisted: weight gain, cramps, fatigue, hair loss — the list goes on. As the years passed, my symptoms grew worse and worse. It took years of advocating for my health at the doctor’s office to finally have a blood test ordered and my hormones checked.
As I predicted, the tests were way off, and with no help from my doctor besides a diagnosis, I had to take matters into my own hands. Through extensive research, listening to podcasts, learning tips from women on the internet who also struggled with the condition and learning about the different types of PCOS, I finally felt that I could start treating this condition. But beyond my personal story, there remain two larger underlying issues surrounding PCOS — the lack of accessible care for women with PCOS and the lack of knowledge within the medical field.
Whether you were just diagnosed or have been dealing with this condition for years, you may still be confused as to what PCOS really is and which type, or types, you have. According to Mayo Clinic, PCOS is “a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs.” While that is a good basic description, the reality of PCOS is much more complex. From my personal understanding, PCOS is absolutely a hormonal disorder, but it is also much more. With PCOS, you can have any combination of have high testosterone levels, high androgen levels, ovarian cysts or no ovarian cysts and insulin resistance. Types of PCOS are typically grouped into four subgroups: insulin resistant, adrenal, inflammatory and post-pill.
Insulin resistant PCOS means that your body produces high levels of insulin, causing unexplained weight gain. It can also raise male hormone levels, causing hair loss, excess hair growth in areas like the chin and acne. This type of PCOS does not necessarily mean you have cysts on your ovaries, but they are also a possibility. Adrenal PCOS refers to having high levels of the DHEA-S hormone, which is your stress hormone. Post-pill PCOS is when PCOS symptoms occur (like weight gain, excess facial hair or acne) after stopping the usage of a birth control pill. It can resolve by itself but can still take some time. Inflammatory PCOS is a condition that a lot of women with PCOS deal with, and causes chronic inflammation throughout the body. Women with PCOS can have a mix of each and every one of these types of PCOS, which makes the syndrome very difficult to live with. Some women with PCOS do not have any cysts on their ovaries while others do; this condition is individualized and should be treated by a doctor as such, but oftentimes it is not.
I have spoken to many women with PCOS about their experiences, and, like myself, many of them started experiencing symptoms in their mid-teen years. Unsurprisingly, they were also put on birth control pills by their doctors with no additional care or treatment. While the birth control pill does help regulate hormones, it is not a solution. I decided to do my own research and found multiple resources for PCOS patients. Some of my favorites are the PCOS Nutritionist podcast, the Cyster and Her Mister podcast, My Happy Ovaries Blog and reading and listening to tips from women with PCOS.
I cannot give any medical advice due to lack of training, but I highly recommend listening to the podcasts mentioned above and figuring out what works for you, seeing that doctors (in my experience) do not provide much help. Also, if you think you may have PCOS, advocate for your own health and demand that your doctor write an order for the necessary blood tests to diagnose PCOS. We clearly need more advocacy and awareness for PCOS, and through the PCOS Awareness Association, you can find research, information and resources. You can also donate for further research and development. The C.S. Mott Children’s Hospital has resources for younger people dealing with PCOS, but better and more specific PCOS resources from more medical institutions are necessary. PCOS is an issue that millions of women in the US deal with, and it is time to start treating it like one.
Katie Maraldo is an Opinion Columnist and can be reached at kmaraldo@umich.edu.