Polycystic Ovarian Syndrome. That’s a mouthful, right? What the hell is it? Why should you know about it? Why should you care? But before we get this party started, let me tell you what I knew about PCOS before the doctor’s visit that changed my perspective.

  • It had to do with ovaries and cysts (I mean, I’m not a moron).

  • It was painful (commercials and ads showed women that looked like they were dying… but I hoped they weren’t!).

  • You can’t have kids (let me tell you right now, I was misinformed on this one).

Now, I went to see my doctor for a few lady reasons. **Disclaimer, if words like PERIOD, OVULATION, or BLOOD bother you – look away.** When you have a baby, they tell you it can mess up your system for about a year. So when that year had passed, and I was still all messed up, I decided to see my amazingly awesome doctor.

I went to my doctor with the following list of symptoms: irregular periods since I was a young teen, heavy bleeding (made worst post-partum), and the occasional sharp lower abdominal pain. That was it. It thought my hormones were going to be a little wonky; I’d get a pill and be over it in no time! *Ahem* WRONG! A series of questions, a blood test, and an ultrasound later gave me the wonderful diagnosis of PCOS. Okay, that sounds fun and simple to fix. Well, not so much.

Come to find out, my fabulous little ovaries are so high class that they both come with their own string of pearls (a.k.a. the way the cysts form in the ovaries look like a string of pearls) and said pearls like to cause some serious pain. In addition, as a result of the questions I answered, my doctor ran some tests and found out I was also insulin resistant, not diabetic or pre-diabetic, just insulin resistant. What was I to do with this new knowledge? Well, thankfully for me I already followed the “recommended PCOS diet," which is low carb and low sugar, and I exercise regularly. However, it also meant I needed to begin to understand this new syndrome I had because – fun fact – PCOS isn’t curable. Yep. You guessed it. I’ll have it forever.

Time for some knowledge. Want to know what advice I always give people? “Never talk to Dr. Google! He just makes you worry!” Want to know who I talked to that night? That bastard Dr. Google. This is what he told me:

  • PCOS can cause missed or irregular menstrual periods leading to infertility or the development of cysts. In fact, PCOS is one of the most common causes of female infertility.

  • Between 5-10% of women of childbearing age have PCOS.

  • Common symptoms of PCOS are irregular periods, hirsutism (hair in irregular places on women such as the face or chest), acne, thinning hair, weight gain, inability to lose weight, darkening of the skin, and skin tags.

  • Studies have found links between PCOS and diseases such as diabetes, high blood pressure, unhealthy cholesterol, sleep apnea, depression, anxiety, and endometrial cancer.

  • Following a healthy diet and exercise plan is essential to living well with PCOS.

    • https://www.womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.html

    • https://www.womenshealth.gov/fitness-nutrition/

Pretty stellar information, huh? Basically I felt like I was never going to have another baby, I was never going to lose another pound, I was going to turn into a gorilla, lose the hair on my head, get covered in skin tags, and die of cancer. Fabulous. Fan-fracking-tastic.

After spending a day crying in bed on my husband’s shoulder over the idea of possibly not having another baby, I made my next move: find a support group online and learn everything I can about maintaining the healthiest lifestyle I can with this. Once I found one, I immediately posted two questions:

  1. If you were talking to someone who knew absolutely nothing about PCOS, what's ONE THING you'd want them to know?

  2. In a few words, how does it make you feel about yourself?

Some of the responses broke my heart, but others left me hopeful and empowered. Today, I share some of them with you.

What is one thing they’d want you, as an audience, to know?

  • “It feels like your own body is rejecting you.”

  • “PCOS is not just a period issue, it effects almost every area of my health.”

  • “It's like your body is trying to turn you into a guy. Imagine that for a second. Or if explaining to a guy, imagine all your body hair fell off and your head hair grew long and you started to grow moobs and you developed cellulite as you gained weight for no reason. Imagine how unmanlike and horrifying that'd be.”

  • “Just because you can't see it doesn't mean that it's not real.”

  • “You spend your life trying to figure out why you get headaches, migraines, have acne, stomach problems, bad periods, no periods, anxiety, depression and excess hair, excess hair everywhere. And then you meet the love of your life and you get down and dirty but are careful to not get pregnant. That is, until the day you both decide you want to get pregnant only to find out you can't because of PCOS. And the worst part... nobody talks about it but apparently a whole lot of us are suffering behind closed doors.”

  • “Before my diagnosis I thought I was just disgusting. Body hair, cystic painful acne, weight gain, depression, mood swings, painful month long periods, then no period for a year. It's often overlooked and passed off as no big deal.”

  • “It is real and I'm not being dramatic. I'm not crying because I need attention it's because I have no control over my hormones and emotions on occasion. I'm not fluffy because I'm lazy or don't eat well it's because I'm sick and can't get the weight off. I'm not bad at compliments because I'm unappreciative or rude it's because I can't see my own beauty sometimes. I'm not whining about cramps I'm in excruciating pain. I'm not living with a silly irrational web md fear of cancer I am genuinely terrified. I'm the best aunt because I may never be a mother.”

How does it make them feel about themselves?

  • “Worthless.” “Never good enough.”

  • “It makes me feel like less of a woman, and the fact that I may not be able to have a baby makes me want to curl in a ball and cry every day.”

  • “PCOS makes me a more determined person. I never took charge or worried about my health before my diagnosis. I feel stronger and more motivated to care for myself.”

  • “Ugly, unattractive, with a body way out of proportion.”

  • “Strong AF. Because despite all the odds I choose to be happy, positive and live the best life I can.”

  • “I'm working on feeling better about it, but it's hard. Some days I just feel so unattractive and so powerless to do anything about it. I worry that I'll never have children because of it.”

  • “Like you're walking around with a deep dark secret that you can't tell a soul. It is especially damaging when you battle with fertility and people question you as to why you don't have kids or only have one or when will you have your next. People need to keep their comments to themselves and start realizing that those are very personal questions.”

  • “It's scary and lonely when the ones you love don't understand or downplay what you're thinking and feeling. It is also empowering because I know many people who couldn't live with this and conquer it every day the way we do.”

Basically, PCOS is syndrome with a wide variety of symptoms under its umbrella. It brings many women, or “cysters” together as we work together to cope with this illness and manage it as best we can. Having a good support system can be essential to a healthy emotional state. Many individuals can find comfort and friendships in the form of support groups, as I did. There various types of support groups for women with PCOS. There are online message boards, anonymous forums, and groups on social media outlets.

If you are struggling with PCOS and need someone to talk to, I encourage you to find a support group that fits your needs. I will share a few links here of group I am personally a part of so I know for a fact that they are helpful!

  • This first page is SoulCysters! It is a message board setup for those that want a little bit of anonymity, but still seek advice and a community. http://www.soulcysters.net/

  • The second group is PCOS Support Group [Worldwide]. It is a Facebook based closed group. (Closed groups can be searched on Facebook, but the content of the group is private unless you are added as a member.) It is a massive support group (almost 11k members), perfect for those that want lots of valuable information from a wide variety of sources. https://www.facebook.com/groups/PCOSHelp/

  • This third group is PCOS – Peace, Love, & Support! It is a Facebook based closed group. It is a smaller support group, perfect for those looking for a more intimate support system! https://www.facebook.com/groups/PCOSpeacelovesupport/

Published by Audrey Jo