How Can I Navigate the Craziness That is PCOS?

When I was 16 years old and my gynecologist prescribed me the birth control pill due to my irregular periods, I didn’t think to question her decision. I was a teenager who really just wanted clearer skin, and I had no idea that my fertility was something I should be worried about at that time.

Still, in my 20s I always had a sneaking suspicion that the pill was masking an underlying issue. Why had my periods been so few and far between before starting birth control? There had to be a medical reason. Yet every time I saw my gynecologist for my yearly exam, she dismissed my worries. She said, “you won’t know until you go off the pill and start trying to have a baby.” Comforting, right?

I was 27 years old when I finally decided to go off of the birth control pill. It was right after my wedding, and we weren’t necessarily ready to start trying for a baby yet. I really just wanted to flush the hormones out of my system in hopes of restoring my normal menstrual cycle so that we could start trying in a few months. But my gut told me it wasn’t going to be that easy, and as it turned out, I was right.

3 months after stopping the pill, I still hadn’t gotten my period back. I went back to my gynecologist, and she ordered me an ultrasound and a blood test. When the results came in, she diagnosed me with Polycystic Ovarian Syndrome (PCOS) and told me I would need the help of a Reproductive Endocrinologist to get pregnant. My initial reaction to this was, “that would have been nice to know 11 years ago!”

After my diagnosis, I had so many questions. What exactly is PCOS? What would it take for me to get pregnant? Would I have to do IVF? What would the timeline be? Would I ever be a mom? Little did I know at that time, but the answers to those questions would not be so straightforward and I was in for a year-long fertility journey that would both challenge me and change me.

There are many things I wish I knew about my fertility prior to my diagnosis with PCOS, but there are also many things I wish I’d known following my diagnosis about what to expect while undergoing infertility treatments:

1. Infertility is not a one-size-fits-all diagnosis.  

At my initial consultation with my Reproductive Endocrinologist, she said, "you're 28 years young, healthy, and in shape. You’re going to be just fine.” She confirmed that I had Polycystic Ovarian Syndrome (PCOS), but she assured me that mine was just an ovulation issue, and with the help of Clomid I would be pregnant before I knew it.

I know now that she had no way of being sure of that, but it was incredibly frustrating at the time because she led me to believe that my case was going to be a quick fix, and it wasn’t. I wish I had known from the beginning that PCOS is not a one-size-fits-all diagnosis, and being treated for infertility is a process of trial-and-error that takes time and requires patience.

2. Everyone’s journey is different, so try not to compare yourself to others.  

When it comes to infertility, everyone’s journey is different, so try not to compare yourself to others. For some women with PCOS, Clomid is the magic drug that makes them ovulate; for others, it’s Femara. For others, like me, IVF was what I needed to get my big fat positive. What I’m trying to say is, what worked for someone else might not work for you and vice versa.  

There are also additional factors at play, such as age, diagnosis, your partners’ fertile health, and more, so no two experiences are exactly the same. Comparing your failure to others’ success will only make your journey more difficult, which is the last thing you need while dealing with infertility.  

3. It’s a big time commitment.  

Because I was immediately referred to a Reproductive Endocrinologist following my PCOS diagnosis, I will admit that my husband and I were thrust into the world of fertility treatments a bit sooner than we were ready. Although we still decided to go full steam ahead, I had no idea when I started fertility treatments just how much of a time commitment they would be.  

On top of my full-time job, I would have blood tests and ultrasounds 2-3 times a week before work, acupuncture in the evenings, and a weekly therapy session. When you throw in having to remember to take several different medications every day, sometimes I marvel at how I juggled it all. Looking back, I wish I would have been more mentally prepared for the physical and emotional toll it would all take on me.    

4. It is a valuable life lesson on giving up control.  

For me, infertility was probably the best life lesson in relinquishing control. I mean, your body isn't doing what nature intended it to do (in my case, ovulating). How's that for something being completely out of your control? I laugh sometimes when I think about the time right after I stopped taking birth control when I was convinced for the two weeks after that I was pregnant.  

Looking back now, I realize how naive I was, but when you try for so many years NOT to get pregnant you tend to assume that getting pregnant will be a fairly quick and easy process. Obviously, that wasn't the case for me, and it killed me that I couldn't plan my family the way I wanted to, but now I realize that some of us just don’t have that luxury, and that's okay.

5. It involves sacrifice.  

One of the hardest parts about going through infertility is having to treat your body like you’re pregnant when you’re not, but you want to be. Sounds fun, right? When I started fertility treatments, I didn’t realize it would involve a year of sacrificing some of the things I loved, such as high-intensity exercise and going out for drinks with friends. I found it to be a constant push-and-pull between doing the activities that make me who I am and cutting back for the sake of getting pregnant. It was a complete mindf*ck, to say the least.  

6. It’s important to be your own health advocate.

I wish I would have known that I didn’t have to stick with the first fertility doctor that my OBGYN recommended. It may not have ended with me getting pregnant any sooner, but I do think switching doctors sooner would have saved me a lot of frustration in the long run. That being said, if one doctor’s bedside manner or treatment plan doesn’t sit right with you, seek a second opinion even if it means making a change mid-cycle.  

Hindsight is 20/20, but sometimes I think if my case had been taken more seriously from the beginning, it might have tempered my expectations of the whole process a little bit and made me much more comfortable from the start.  

7. It can feel isolating.

Infertility can be incredibly isolating. What helped me through it was being open about my experience and leaning on friends, family, and my husband during that time. Although it tested my relationships big-time, it also made the relationships that survived the challenge stronger than ever.

If you aren’t comfortable confiding in family or friends, and I know many of you aren’t, I would recommend talking to a therapist or even strangers on Instagram (you can find many over at @fertility.rescripted!). It will help you more than you know to realize you are not alone in this.  

8. It’s okay to cancel plans and opt for self-care instead.

You can’t pour from an empty cup. Whenever I was feeling down during my fertility journey, I would try to practice some form of self-care, whether that meant getting my nails done, reading a book, or going for a run. You will quickly realize during this process that you need to do whatever you need to do to relax during this incredibly stressful time, even if that means canceling plans to stay in. The people who love you will understand, I promise.  

9. It’s okay not to be okay sometimes.  

When your body isn't responding to a medication the way the doctors thought it would (hello, Femara!), when you get a negative pregnancy test, it’s okay to be sad. You are mourning a baby that you want so badly in your life, and that is as good a reason as any to cry, be angry, or upset. My general rule of thumb for myself after a bad day was to take as much time as I needed to grieve, but then to try and wake up the next day with the courage to try again.  

My advice is to do whatever you feel is best for you, even if that means taking a break from treatments. Remember, your mental health matters, too.  

10. It will change you for the better.  

Fast forward through several failed IUIs, one egg retrieval, a bad case of OHSS (thanks, PCOS!), one failed frozen embryo transfer, and one successful FET, I am now a mom to my miracle 11-month-old twins, Brooke and Charlie. And while I promise I am not one to say, "it will all be worth it in the end," because I know infertility doesn’t have a happy ending for all, I do believe that I am a better person because of what I went through to conceive my children.  

I learned how strong I am because being strong was the only choice I had. I learned how to lean on the people in my life like I never had before. I learned about the importance of self-care. I learned to love myself for what my body could do rather than what it couldn’t. Now, my marriage is stronger than ever, my friendships are more genuine, and I am a more resilient mother to my kids because of the journey it took to get here.  

Still, now that I’m a mom, my PCOS hasn’t just disappeared. Although I had always heard hopeful stories about women’s cycles regulating after giving birth, that unfortunately didn’t happen for me. Despite not breastfeeding, I didn’t get my period back for 8 months after giving birth, and then I got the heaviest period of my life. Now, 11 months postpartum, I am still dealing with irregular periods and PCOS symptoms, to the point where I am considering going back on the birth control pill to help regulate my cycle.  

Do I want to put synthetic hormones back into my body? Absolutely not. But until doctors start offering better solutions to women with PCOS, a lot of us are made to feel like we don’t have much of a choice. How’s that for my story coming full circle?

To check out Fertility Rescripted, click here.