The Strain Of Advocating For Myself With PCOS

By Kelsey Owens

After listening to countless podcasts, skimming through a boatload of articles, and scouring the internet for tips and tricks, experts and novices alike seem to have the same advice for navigating infertility: advocate for yourself

At first blush, this is wise and makes sense. We are the only ones in our own bodies, knowing what we’re feeling and experiencing. Therefore, we must convey this information to our health care team, so that we can receive the best possible care. However, when you’ve been beaten and bruised by infertility, it’s hard to muster the strength to get up every morning, let alone be your own advocate.

From the time I was 12, I knew something was not or might not be quite right in my body. All I wanted was my period to start, and I entered my teen years with a keen sense that every girl around me was a step ahead. I would look at a friend in math class or the girl in front of me in the lunch line, and I just knew that she was technically a woman, and I was not. 

When I finally got my period, I was 14 years old and three months, to be precise. Excited and a bit scared, I disclosed the intimate details of this momentous day to a close friend. Word about my first period got out amongst the girls in my class and, as I suspected, all polls seemed to indicate I was, indeed, the last one to the party. 

Although this first cycle is clear in the recesses of my memory, future cycles would blend together. But by the time I was 18, I knew my cycles were far from normal. I knew women were supposed to get a period about every month. Sometimes I would, and sometimes I wouldn’t. When I would ask my mom or my doctor about this, they often would tell me it was likely because I was thin, active, and young - that my body was still figuring itself out. When in reality, as I later learned at age 33, I had polycystic ovarian syndrome (PCOS).

After finishing high school and starting college, I began comparing and contrasting my periods with those of my roommates. While their cycles started to sync up and get steadier as they aged, mine continued to stagnate and come slowly. Sometimes, I would go months without a period. I eventually went to student health to seek answers. The doctors and nurses I saw could only shrug and give the same explanation: that I was young, thin, and it was likely hormonal. Birth control was supposedly the only way to improve my cycles, so if I wanted to go on that, great, but it wasn’t necessary.

Similar conversations continued into my mid-to-late 20s, with no primary provider really concerned about my irregular cycles nor interested in helping me know if this would present an issue when I wanted to start a family. But in the back of my mind, I knew there was a problem, and I had a sense that having children would be anything but easy. 

Although my cycle was tricky to track, when my husband and I started trying for a baby I was elated, and a bit surprised, to fall pregnant after our second month of trying. I instantly thought that, perhaps, my inner intuition was wrong, and my problems were long gone.

But, devastatingly, at 10 weeks, the sonographer turned to me with the words I cannot bear to even type, and I was whisked away to a private room: the den of sadness, as I now call it. After half-listening to what my doctor was trying to tell me about options and surgery and testing, I let her essentially make the decisions for me - dilation and curettage (D&C) - because I didn’t have the strength to choose. How could I advocate, and what was I advocating for anymore?

Just over three months later, I was back in the den of sadness. I was thrilled, albeit terrified, to be pregnant again and then distraught when it ended, this time due to a blighted ovum. My body decided what the next steps would be, as I miscarried at home. Unfortunately, months later, I was back in the operating room again, to remove residual tissue that never cleared after the miscarriage. And the road to recovery was far from over. Quite the opposite of my concerns at 12 years old, I could do nothing but bleed for several weeks on end. I was decimal points away from needing a blood transfusion, and I felt like my body and soul were down for the count.

By the time I met with a specialist, I was depressed, confused, and overwhelmed. I needed someone to step in with just a good measure of expertise, paired with a bit of care, to guide my ship back on course. Although the most common phrase I heard during this season was “you are strong,” I was not. I was (barely) surviving, and I needed someone to help me advocate. 

Many of us have borne the weight of being our own self-advocate for far too long and perhaps you, like me, feel frazzled, depressed, and alone. Although these feelings are a natural part of the process, freeing ourselves from the burden of self-advocacy can feel like finally taking a gasp of air, after being trapped underwater. Remember, you’re mourning while trying to move forward, and the two actions feel unnaturally equal and opposite.

Rather than carrying the banner alone on your trek through the jungle of infertility and loss, consider intentionally adding the following to your team:

Expert advocates

Essentially, a healthcare team you trust, that’s well-respected in the community. I learned that sometimes it takes more than one doctor. If you're like me, you may have an OB, a reproductive endocrinologist, and a hematologist in your corner. Perhaps ask for a referral from a friend or others you trust, so you don’t have to do as much extensive research (although you totally can, if you’re up for it). You are also free to leave or move clinics anytime you like; trust your gut. And, if that’s too much pressure or weight, ask one of the following below for their support.

Sidekick advocates

These can be supportive partners, family members, or friends who are willing to help with research, listen to your feelings, and help you make appointments. It’s especially helpful to have someone who will ask the hard questions and not let you cave. It’s all-too-tempting to say that “everything is okay,” when you’re in the provider’s office, in an attempt to play the docile, good patient. Having your sidekick advocate with you will help counter this tendency. Perhaps they can even be the keeper of your list of questions, so you don’t have to stress out about forgetting to ask something.

Empathetic advocates

These are individuals who have faced infertility before whom you can bounce ideas off of and vent to. Just remember, their journey may be different than yours, so know that your specific situation and even your feelings about your situation may be different. It's also important to be selective about who you let fill this role, as it can be overwhelming to have too many voices and opinions. 

Trust is key as, if you have faith in your team of advocates, you can feel like you’re not forced to make decisions and ask questions alone. Answers are precious and often elusive during loss and infertility, but by releasing ourselves from the burden of solo self-advocacy, we can open up the door to greater support and reduced anxiety, as we slowly put the pieces together.

Kelsey Owens is a University admissions dean and a freelance writer/editor, based in Kansas City, Missouri. After facing back-to-back pregnancy losses, Kelsey was diagnosed with PCOS and is in the thick of her IVF treatments. Kelsey believes in the power of writing as a means of healing, processing, and connection throughout life, especially during infertility and loss. You can follow her on Instagram at @kc_owens for life updates, musings, and, of course, pictures of her cat, Domino.