Polycystic Ovarian Syndrome Can Suck, but it Doesn’t Have to: A Beginners Guide

by Danielle Lyons

Unless you have Polycystic Ovarian Syndrome or PCOS, it’s a safe bet that you don’t know much about it. According to the good ole’ Mayo Clinic, “is a common endocrine system disorder among women of reproductive age. Women with PCOS may have enlarged ovaries that contain small collections of fluid. Infrequent or prolonged menstrual periods, excess hair growth, acne, and obesity can all occur in women with polycystic ovary syndrome.”

It’s easy to hop on WebMD and freak yourself out with all of that information. After reading, I started to feel an impending sense of doom. The symptoms didn’t freak me out as much as not knowing what to do about it. But alas, there was a silver lining in the vast space of the World Wide Web. I discovered online communities of women who bonded over the same thing: Polycystic Ovarian Syndrome. These tribes of women willingly doled out advice, tips and often times, comfort. These amazing women gave me a better idea of what I was dealing with. They also gave me something that the doctors didn’t: Hope.

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  1. Don’t be afraid to find some people you have this common ground with, whether it be through the internet or in person. It’s nice hearing advice or information about PCOS from a personal perspective. Although the support from our friends and family does help, finding someone that can empathize with is always a comforting feeling. Don’t be afraid to ask these women how they deal with certain symptoms. Or even what medications might be working for them. Some of these online communities include, PCOSupport, PCOS Awareness Association, Soul Cysters, Overcome PCOS and of course many pages on Tumblr

My initial visits, the doctor spent a large amount of time lecturing me about my weight and nothing about treatment that can be done. Anna Styers-Barnett of “The Feminist Breeder” had a familiar experience pre-diagnoses, when she was discussing menstrual concerns with a doctor. She goes on to say, “When I asked if I would have trouble getting pregnant, she said, ‘We’ll have to wait and see. It would help if you lost some weight.’ Words women with PCOS hear too often, without receiving a thorough evaluation or referral to the appropriate specialist.” Doctor’s appointments can be difficult and trying.

  1. I learned to be very direct with my doctors. I also learned not to let them tell me how I was feeling. They’ve seen so many patients, I can imagine that every so often they forget that not every patient comes with the same problems. If someone mentions a medication that’s working for them, don’t be afraid to ask about it if you’re interested. Or any question for that matter! Even if a medications just not meshing well with you, speak up. You have a say in how you’re treated. And if at the end of the day you’re not getting the treatment you need, feel free to try new doctors.

Self-esteem can be an uphill battle for PCOS sufferers. Excessive hair growth or loss, acne and obesity are common themes amongst those with PCOS. Many women describe as feeling, ‘Betrayed by their body.’ The excessive hair growth and loss have always been my biggest insecurities. I felt like my feminine identity was being taken from me. Meagan Morse, from the National Women’s Health Network newsletter recalls, “As my body changed due to PCOS, I struggled to reconcile the changes happening with my body hair and my sense of self.”

  1. It’s important to know that there are medications to help with these side effects. Definitely tell your doctor what side effects bother you. In many cases, these side effects can be managed. But in the meantime, do something that makes you feel good about you! With your body going through so much, self-care can be very essential. And lastly, don’t be afraid to talk about it to someone you trust. It can be a scary thought, but anyone that cares about you won’t cast any judgement.

A diagnosis of Polycystic Ovarian Syndrome doesn’t mean your life will be lesser. PCOS is hard, but it definitely isn’t hopeless. You have options, treatment and support groups available. I implore you to reach out, ask questions, and do what makes you feel good.