What Women with PCOS Want You to Know {PCOS Awareness}

September is Polycystic Ovary Syndrome (PCOS) Awareness Month. PCOS affects 1 in every 10 women of childbearing age and can affect women’s overall health and appearance. It is a hormonal imbalance whose cause is unknown and a common cause of infertility.

Some of the symptoms include irregular menstrual cycles, excess facial hair or hair in places where men usually have hair, acne, thinning hair, weight gain, inability to lose weight, darkening of skin, and skin tags.

Many women are able to manage their PCOS by taking certain medications or incorporating lifestyle changes, but many women still struggle with the symptoms even after treatment. Women with PCOS who are able to get pregnant have higher risk of miscarriage, gestational diabetes, preeclampsia, and c-sections. And babies born to mothers with PCOS often have higher risk of being born heavy and spending time in the NICU. (1)

I don’t have PCOS, but many of my readers and infertility sisters do. I asked some of them to tell me, “What’s the one thing you’d like your loved ones to know about PCOS?” Their names have been withheld for privacy reasons, but here are their responses.

pcos awareness

“Although my family is very understanding now (I’m 30 and married), when I was first diagnosed, I was sixteen years old. My hormones controlled me, and I didn’t know what to do with them. I was happy one moment, angry the next, and sad a few minutes later. Patience. Back then, I wished they understood that I didn’t know how to control my hormonal emotions.”- B.

“How it effects multiple aspects of your life. We didn’t know I had it until we started trying to conceive. We may not always want to talk about it, [so] don’t take offense to it.

“That every month I pee on multiple [pregnancy test] sticks and they are all a big fat negative. Please don’t ask if I am pregnant.

“The thing with PCOS is a that a woman doesn’t ovulate every month, but can still have a “period” or bleeding so she can miscalculate ovulation days. So it is really, really hard to get pregnant. Many of tracking methods like temping and ovulation tests don’t work on us. This is at times very frustrating. Our chances to conceive are harder because of the fact that we don’t ovulate every month.

Don’t tell me we just have to relax and “do our homework”. It doesn’t matter how many times we do it, if it’s on a month I didn’t ovulate…nothing will happen.”

“Maybe if you lose weight, you’ll get pregnant. Well losing weight isn’t easy with PCOS. And it isn’t a matter of me just relaxing!!

“That no matter how hard I try I can’t get the weight off. Even though I’m appreciative of the diet tips but 9 times out of 10 I have tried it already.”

“Losing weight is not the same for me. A crash diet may work but then I’ll put it back on double after. My lifestyle diet means when you eat pizza, I eat a salad. When you eat a burger and fries, I eat grilled chicken and spinach. PCOS is a hormonal disorder. That means sometimes I will feel absolutely crazy because I have no hormones to adjust my mood. I’ve gone from not having periods at all to having some kind of bleeding every two weeks. I’m at a higher risk of having diabetes by age 40, not because of my eating habits but because of my hormones. I have to pay thousands of dollars for each child I want to have..even when the child does not survive to birth.”

“At 19 years old and weighing 110 lbs. (underweight for my height), I was diagnosed with PCOS. My ovaries were full of cysts and I was not having a period. Can you say moody!?! All I could think about was the terror of not having children. I was put on Metformin and by the grace of God my cysts disappeared. However by age 22 I was diagnosed with premature ovarian failure and those symptoms were even worse.”

You can’t just take out the cysts. Since your body doesn’t regulate your hormones correctly, it still gets naturally overstimulated and they come back. And the only way mine get suppressed is by birth control which obviously hinders the chance of pregnancy. It’s a lot of playing with your hormones to get the cysts suppressed enough and start a treatment and then hope that it doesn’t cause the cysts to return to interfere with that said treatment. I would do one cycle, cysts return, birth control for a month or so, another cycle, cysts return, and so on and so forth… It’s a lot of different hormones each month and it’s hard not to ‘relax and not think about it.’ It’s exhausting.”


So if a woman you know suffers from PCOS, please show her empathy and understanding. PCOS is a disease with life-changing consequences. The best thing you can do for her is to be supportive and kind. Don’t offer advice or “tips” unless she asks you for them.  Pray for her regularly.  If you really want to help, consider asking her what kinds of specific and practical things would make her feel loved and supported.

You can find out more about PCOS & PCOS Awareness here and here.  You can also read my previous posts about PCOS and read stories from women with PCOS here.

Source: Polycystic ovary syndrome. (2017, July 26). Retrieved August 27, 2017, from https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome.