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.

How I Feel About My Upcoming FET

It’s a weird thing to think about trying for a second baby when you’ve already had one as a result of doing IVF. On one hand, I’m no longer an IVF newbie. I know what to expect from it. I know what it takes. And I know that when it works it’s absolutely worth every penny, every tear, and every injection.

I also know that when it fails, it feels like your whole world is over.

Except this time around, as we are gearing up to try for baby #2, I no longer feel that pressure or the sense that I may never recover if it fails.

I am well aware that I’m one of lucky ones. We have multiple frozen embryos. The odds are in our favor. And I have a beautiful, healthy daughter, so even if I don’t get pregnant, I am beyond blessed. I would be sad, yes, but still immensely grateful that we were able to have a child at all.

Also, I feel like I’m just now getting back to being myself after having our daughter. I struggled with some mild postpartum depression, and our family has been through some major changes and transitions since she was born. My husband changed jobs twice (both were promotions, so it was a good change, but it still was stressful), we sold our house and are currently living with our in-laws until our new house is completed in October, I’ve struggled with balancing self-care and childcare, and we had to euthanize our beloved cat, Hemingway. Oh yeah, and we also endured an extremely stressful cross-country trip that involved everyone getting a stomach virus, missed flights, traffic tickets, torn ligaments, bladder infections, and puking on the airplane. (We keep telling ourselves it will make a hilarious family story in ten years).

So the thought of doing another IVF anytime soon just makes me want to say “No thanks!” But I’m 36 and I really don’t want to be 50 years old with children in elementary school, so we need to get moving. Honestly, if we didn’t have the frozen embryos, we probably wouldn’t be doing this again. I don’t want to take the drugs again. I don’t want to do the monitoring again.

On yeah, and I’m terrified to do it all again while caring for a toddler full-time.

But we are / I am doing it nonetheless.

All this to say that I’m feeling really neutral about it this time around. Almost ambivalent.

Again, I’m well aware that ambivalent is a very fortunate place to be. I remember the not-so-ambivalent feelings I had while trying to conceive my daughter. I know that so many of you reading this probably want to kick me right now. You’d give anything to do IVF without feeling pressure or without feeling like your world will fall apart if it fails. Oh, how I remember, dear friend.

I guess I’m just trying to say that I’m tired of infertility. I’m tired of it for all of us. For those of us trying to conceive baby #1, and for those of trying to conceive subsequent babies.

Thanks for reading this far! I that the Lord would comfort and sustain you wherever you are in your journey.

P.S. Some of you may remember a recent post where I talked about possibly doing a natural FET at Stanford.  Despite my numerous attempts to contact them, they never returned my calls.  Other clinics in the area offer natural cycles, but none that would do long-distance monitoring or would let me become a patient without re-doing certain tests.  So, we are staying with our previous RE (whom we adore, but he doesn’t do natural cycles).  His office is less than 15 minutes away and we feel we can be successful there again.


If you’re looking for more encouragement during infertility, be sure to check out my book, 31 Days of Prayer During Infertility.

Prayer and Community During Infertility {Free Facebook Group}

If you follow me on Facebook or Instagram, you may have seen recent announcement about the FREE Facebook group I’m hosting this coming month (July).  We’ll be going through my book, 31 Days of Prayer During Infertility.  The group will last from July 31-August 31.    Update: The group has since ended, but I’ll be planning new ones soon.  See the link (in red) at the bottom of this post to sign up to be notified when new groups start.

When I first created the group, my goal was to have at least ten women join.  Well, I’m super-excited that over 150 have joined so far!  We haven’t even officially started yet, but the women you have joined are already sharing their stories and praying and encouraging each other.  There’s also a giveaway going on right now, and I have a few more planned!

I know that not everyone participates in social media, so I wanted to be sure to invite blog readers, too.  It doesn’t matter if you’re trying to conceive your first or your fifth.  If you’re struggling to conceive, you are welcome in the group! You don’t have to purchase the book to participate, but if you do want to get a copy you can buy it here.

The group is ladies-only, but I know that several participants will also be going through the study at home with their hubbies.  It is a closed Facebook group, which means that only other members of the group will see your posts.  (However, anyone who looks at your profile may be able to see that you are a member of the group, so keep that in mind).  

Update: The group has now ended, but I plan on hosting another one soon.  If you’d like to receive an email when the next group starts, sign up here.  

Let me know if you have any questions!!