Voices of PCOS: Kymberli’s Story – Empowering Yourself as a PCOS Cyster

Welcome to our final installment of this week’s Voices of PCOS series in honor of PCOS Awareness Month. Yesterday we heard Melissa’s story about what it’s like to not fit into the cookie-cutter mould of a PCOS patient and what it means to be a “skinny cyster.” Today we hear from Kymberli from The Smartness, as she shares her unique journey with PCOS and the need for us as women to empower ourselves in their doctors’ offices.

(Did you miss a story this week? You can click on the Voices of PCOS dropdown menu under the Be Informed tab above!)

Your Voice Matters: Empowering Yourself as a PCOS Cyster

“Here, Kym,” my mom said to me as we stood in her bathroom primping for our grown-ups only double-date,”Try this razor. It’s the best damned thing ever. Look – it’s motorized!”

I lathered up with the powder-fresh shaving cream and took the buzzing razor from her. I took a couple of passes with it, then stroked my skin to see if the blade was, in fact, the best damned thing ever. “Oooh, silky schmooove!”

“See? I told you! But don’t you know you’re supposed to shave down and not up?” she demonstrated.

“Nah, shaving up works better for me. I always seem to have little stubblies left if I shave down.” I paused, suddenly realizing the absurdity of this conversation between women. “Isn’t this the type of lesson that a father has with his teenage son, and not one that a
mother has with her 31-year old daughter?,” I said with a giggle.

Laughing, she said, “What better way to have some mother-daughter bonding than by standing in the mirror shaving our beards?”

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At first glance, I’m not exactly what comes to mind when you think of what infertility looks like. I have four children, to include a set of twins. I’ve even been a gestational surrogate; in 2007, I delivered a healthy baby boy to my former intended parents. To look at me, you’d never know that I am among the 1 in 8 people who have dealt with infertility.

My husband and I tried to conceive without any intervention for more than two frustrating years. Given the scant, irregular periods that had grown increasingly more spaced out from the time that I was fifteen, I knew the problem was with me. After the first year of trying to conceive, I went to my obstetrician without having the slightest idea of what to ask. I didn’t even know the definition of infertility, much less have any idea of what I should expect as a basic standard of care when I went into his office and said, “It’s been a year, and I’m still not pregnant.”

So when he essentially said, “You’re still young, and you’re healthy. It will happen,” I was deflated, but I believed Dr. Idiot.

Like Mandie, I started the next year of trying to conceive by reading Taking Charge of Your Fertility. It didn’t take long for me to realize just how off my body was. I learned how to chart my cycles by taking my basal body temperature (BBT) and by recording other things like cervical mucous quality and cervix positioning. It seemed like anything my body should have been doing, it was not. The most obvious indication of something being amiss was the fact that I never once detected ovulation, and my cycles were anywhere from 50-90 days in length.

At the end of that year, I chose a different OB/GYN. This one had “fertility specialist” etched after the “M.D.” on his name plaque. He took one look at my charts, said I was anovulatory (obviously), and then wrote a prescription for Clomid. Two cycles later, I was pregnant with my twins (who were born in 2001). My two singletons (born in 2003 and 2005) were also conceived on Clomid. I share with you the quick and dirty version of my family-building not to brag, but merely to emphasize the fact that were it not for the assistance of a fertility treatment, the chances of me achieving a pregnancy were very slim.

More specifically, I wanted to point out the interesting thing about how I was diagnosed with PCOS; it wasn’t until I went through the battery of common testing for my first (unsuccessful) gestational surrogacy attempt in 2004 that the words “polycystic ovarian syndrome” were even mentioned to me by a doctor. By then, I’d seen a total of three different OB/GYNs throughout my reproductive history. Dr. Idiot knew of my wonky cycles and did nothing. The doctor who prescribed the Clomid was an excellent obstetrician for the pregnancy with my twins, but while he diagnosed the anovulation, there was never any move to determine why I was anovulatory in the first place. By the time we were ready to conceive a second time, he’d gone into retirement. I found a third OB/GYN to handle my Clomid-assisted conception and pregnancy. Not once did any of those doctors – one who I consider a loser and the others whom I respect – even mention PCOS or give me any indication that I had cause to be concerned about anything deeper than the anovulation. It was my former IPs reproductive endocrinologist who diagnosed the PCOS.

I remember sitting in her office as she reviewed my gynecologic and obstetric files. She asked a few cursory questions about the general oddities of my cycles and then got specific: “Did you have an unexpected weight gain? Do you tend to grow any course facial hairs? Do you tend to feel tired and lethargic more than you would consider normal?” Umm…yes, yes, and yes. She told me that she suspected PCOS with Insulin Resistance (PCOS/IR), and after running some additional bloodwork and an ultrasound of my ovaries, she confirmed it to be true.

In writing this piece, I found it necessary to take the long way through telling how I came to receive my diagnosis because I wanted to illuminate just how easily PCOS sometimes tends to slip through doctors’ minds when helping their patients. It took six years and four doctors for me to finally find out what the true issue was.

How can you help raise PCOS awareness for yourself and others?

Empower yourself with knowledge, and use it to leverage for testing sooner, rather than later.

PCOS is as slippery as it is obvious. Many symptoms of PCOS can be attributed to other possible issues. For example, you can have polycystic ovaries without having PCOS. You can have IR without having PCOS. The seemingly inexplicable weight gain and/or facial hair can be attributed to other causes. The same goes for the heavy or scant irregular menstrual cycles that are associated with PCOS.

Furthermore, any number of those symptoms may or may or may not be present in someone who really does have PCOS, like Melissa experienced as a “skinny cyster.” As such, it’s easy for many doctors (and certainly patients) never to connect the dots and see the bigger picture. Once it’s all viewed in toto and a diagnosis has been made, it’s usually glaringly obvious that PCOS is what was wrong all along. The shame of it all is that it takes little more than a panel of bloodwork and a couple of ultrasounds to cement the diagnosis.

I personally believe that as serious as the condition is and as easy as it can be diagnosed, checking for PCOS should be among the first lines of testing done when there is any sort of menstrual irregularity noted, even in teenagers who are before their childbearing years.

Think beyond the infertility.

As I previously mentioned, if left untreated, PCOS greatly increases the chances of even more serious medical conditions developing over time. At least for me, it was difficult to keep sight of that when all I had was baby on the brain (when we were trying for Baby #4 and as a hopeful gestational surrogate). The medications (if prescribed), low-glycemic dietary adjustment, and other treatments don’t just serve the purpose normalizing your system to encourage conception and a healthy pregnancy.

Once pregnancy and delivery are (hopefully) accomplished, the symptoms and implications of PCOS remain even if the infertility has been resolved. While you focus on the family-building, remember that your new lifestyle changes are also paving the way for an overall healthier life in general.

Be your sister’s/daughter’s/friend’s keeper.

You may not have PCOS, but someone around you likely does. PCOS is one of the most common endocrine disorders in women, yet less than 25% of women with it have actually received an official diagnosis. Learn the symptoms for your own benefit, but also learn them to benefit the women who you care about.

If they have irregular cycles and/or other common PCOS symptoms, it can’t hurt to share what you know about PCOS and to encourage them to seek further professional help to determine a root cause. PCOS shows itself with varying degrees of severity; early diagnosis and treatment with simple lifestyle changes and/or medication can greatly lessen the symptoms. Additionally, early detection and treatment can minimize the likelihood of PCOS/IR causing other serious conditions – such as uterine/ovarian cancer, Type II Diabetes, and heart disease – to appear later in life.

Because I passed on what I knew, four of my friends, each of whom had never even heard of PCOS, went on to receive their own PCOS diagnoses.

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My oldest daughter is ten. As she moves steadily closer to the onset of her own fertility history, I can’t help but wonder and worry about how much of this condition I might have passed on to her and to her younger sister. (PCOS can be hereditary; though my mother was never formally diagnosed, she had her share of fertility issues and continuing health concerns that point directly to PCOS.) I’d give anything for my girls not to face any issues whatsoever. But if they do, I am armed with the knowledge of what to look out for, and I will not back down until my concerns for them are taken seriously.

Not by the hairs of my chinny-chin-chin.

Kymberli, thank you so much for sharing your unique journey with PCOS and infertility and for your empowering advice to those who have been diagnosed or know someone who has. You’ve ended our Voices of PCOS series on a strong, inspired finish and I hope everyone here will carry this energy through the rest of September for PCOS Awareness Month.

Another round of applause for all of our fabulous guest posters this week: Kristin, Mandie, Melissa, and Kymberli!

I hope you’re learned a lot this week – I know I certainly have! I hope you’ll continue to share your knowledge with others as we seek to bring more attention to this wildly under-diagnosed disease. I hope those of you who’ve come here as newly-diagnosed PCOS patients leave feeling a sense of hope and empowerment in your journeys.

To hear more about PCOS awareness and what you can do, tune in this Monday at 9pm EST when I appear on The Fertility Forum radio show with Phyllis Martin. We’ll be talking all things infertility and PCOS, so tune in and call in or IM your questions during the live show!

This has been an incredible week with four brave women sharing their stories. I hope you’ll do the same for the rest of PCOS Awareness Month and continue to connect and support one another in your PCOS journeys.

And so I leave you with a bit of brilliance.

“Learn from yesterday, live for today,
hope for tomorrow.”
– Albert Einstein

Wishing hope and strength to each and every one of you walking the path of PCOS.