My PCOS Journey (The Number One Cause of Female Infertility)

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The most common cause of female infertility is four little letters you may never have heard, unless you or a loved one have experienced the diagnosis – PCOS (Poly-Cystic Ovarian Syndrome). PCOS is the name given to a cluster of symptoms, a syndrome indeed, that can manifest differently in different women. There is no specific test to diagnose polycystic ovarian syndrome, which makes it a diagnosis of exclusion – meaning that the physician will be looking to rule out other possible causes of the symptoms, and may settle on a diagnosis of PCOS if a woman presents with at least two of the following:

  • Irregular menstrual periods (for example periods at intervals longer than 35 days or shorter than 20 days, or failure to menstruate at all for months on end).
  • Excess androgen – this can be detected with a blood test; excess androgen in a woman’s body can cause male-pattern baldness or excess hair, facial hair, and adult acne. Fun!
  • Polycystic ovaries – sometimes called a “string of pearls” around the ovaries – and it can look like exactly that when viewed via ultrasound.

ancsa 005I actually had read about PCOS before my own diagnosis, but to hear the words was nevertheless a bit of surprise. I’d long had a quiet, persistent anxiety that I might have trouble getting pregnant. When I first started having menstrual cycles they were never quite regular, but such irregularity in adolescent girls is common and no one was much concerned. When my cycles hadn’t stabilized by age 16, my mom took me to the doctor – still my pediatrician at the time, rather than an ob/gyn. The solution offered was one that’s often suggested for irregular cycles – to regulate them hormonally via progesterone (aka birth control pills). But this was just to address the annoyance of wonky periods and no underlying diagnosis was sought. After a year or so on “the Pill”, I was regular even without it, and through my 20’s I was off and on birth control, but more on it than not as I got through college, moved back to Cincinnati, and mingled my way through the late 90’s dating scene.

In 2002 I met the man who would become my husband, and by the time we married in 2005 I was 32 years old. To say the old biological clock was ticking would be an understatement – more like blaring a thunderous alarm. The pills were immediately tossed and we got busy. Conventional wisdom says a couple should be trying to conceive for a year before consulting a fertility specialist, but after six months that quiet anxiety was growing to a clamor; three months after that I consulted my ob/gyn. Given my age, she prescribed Clomid – again without any specific diagnosis – but because my cycles were still irregular and because irregular cycles can indicate infrequent or absent ovulation, and Clomid is the first drug of choice to stimulate ovulation. Unfortunately, three cycles were a bust. At that point, my ob/gyn said she’d done all she could, and recommended I see a reproductive specialist.

During all this time, I wasn’t only following the advice of my physician – like any obsessed modern woman, I consulted Dr. Google. Time after time, when looking up irregular cycles, I saw the term PCOS. But nearly all of the websites and information on PCOS indicated that one of the most common symptoms was being overweight or obese – which did not describe me. Finally, based on my ob/gyn’s recommendations, we choose to see Dr. Neeoo Chin at the Fertility Wellness Institute of Ohio. Within two visits, with a blood test and ultrasound we had a diagnosis – polycystic ovarian syndrome. In consulting with the Reproductive Endocrinologist, I learned that up to 20% of his PCOS patients were not overweight, and gained more context around the various clusters of symptoms that women with PCOS may experience – and how much that experience varies from patient to patient. In addition to irregular menses and fertility problems, women with PCOS may also have issues with blood sugar – hypoglycemia, insulin resistance or eventually diabetes – thyroid imbalances, and those pesky ironies of hair cropping up where you don’t want it, while also thinning or balding where you do want hair.  The increased risk of diabetes and thyroid problems also can contribute to a higher incidence of heart disease in women with PCOS. For all of these reasons, even if infertility isn’t a concern, women who suspect PCOS or have several of the identifying symptoms should consult a physician to try to confirm a diagnosis and have a better long-term picture of their overall health and future risk factors.

My story has a happy ending – following treatment with Dr. Chin that included Clomid, but also Metformin (often used to treat diabetics and/or insulin resistance), and Intra-uterine Insemination (IUI) I became pregnant with our daughter. I remained on Metformin for the first trimester of pregnancy – women with PCOS are also slightly more prone to miscarriage, and some doctors feel that Metformin helps mitigate this risk. I delivered a beautiful, healthy, full-term baby girl. I also count myself as one of the extremely lucky “cysters” in that following a full-term pregnancy, my body got a bit of a “reset” and I had regular cycles long enough to conceive our son, born just over 2 years after our daughter. I also found an incredible well-spring of support and information in an online community dedicated to PCOS and in fact some of the women I “met” on the soul cysters forum have become close friends.

For any woman struggling with seemingly random symptoms or questioning her fertility, I recommend researching PCOS and working with a Reproductive Endocrinologist. There is hope and treatment – and in no way should those four letters get to define your life or path to parenthood.

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Jen Thomas
I am a native Cincinnatian working in the higher education / learning solutions industry and am passionate about education, reading, and all things literary. I live with my husband, daughter, son, and 2 dogs and we love reading with the kids, especially the stories my daughter writes and illustrates. Our family also enjoys hiking, travel, and cooking together, and as a bit of an amateur foodie, I'm committed to running on the streets and trails around Cincinnati to burn off the food.

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