Living with Hidden PCOS | Polycystic Ovary Syndrome

polycystic ovary syndrome

I'm a mum of four who has spent the last decade struggling with polycystic ovary syndrome, or PCOS. Immediately some people might do a double take because PCOS and motherhood often don't co-exist or there's a tragic story of strain and struggle to get pregnant and sustain that pregnancy.

Without getting too in depth, polycystic ovary syndrome is a hormone disorder which is sadly becoming more common. It is estimated that it affects 1 in 10 women, making it the most common endocrine disorder. Symptoms often include fertility issues, irregular or absent menstrual cycles, excessive hair growth, adult acne, heavy periods, pelvic pain and more. Polycystic literally means "many cysts" which are characteristically on the ovaries.

Sometimes I refer to my situation as "hidden PCOS" because despite my diagnosis, I very visibly have four children. People look at my family and would not assume I have any issues with fertility. What they don't see is how my husband and I tried for two years to conceive our daughter. They don't see the tears I cried when it took another two years to have my first postpartum period after her birth. The uncertainty of whether we would conceive again made my heart so heavy. I was consumed with my "broken body," feeling like our struggles were all my fault. I was clearly the problem. I didn't publicly display the countless pregnancy tests and ovulation trackers. I didn't blog about the rude endocrinologists who dismissed my questions and concerns because they treated me like a number and not a human being.

PCOS painful cramps

I conceived my first child when there was one painful cyst on my left ovary. At my latest ultrasound I had over 25 cysts on each.

The ultrasound tech started counting and eventually stopped while showing my enlarged ovary that looked more like a crater on a large screen.

My hidden PCOS is further disguised because I have (thankfully) breastfed three of my four children.  My eldest was not because an incompetent doctor gave me inaccurate advice regarding medication use which I didn't think to question.  I believe I could have breastfed him had I tried. My younger three were all breastfed past a year and well into toddlerhood. I was originally naive to the fact that PCOS could impact a breastfeeding relationship but it does make perfect sense, since our hormones are so intertwined with breast milk production.  While I have a very stable supply, that didn't lessen my fear with each new pregnancy! During my last pregnancy the “what if” of my high androgen levels negatively impacting my supply really worried me. Would my luck run out and my supply be non-existent? I spoke with two lactation consultants who helped ease my fears and said all I had to do was call and they would help me.  While that made things easier, the idea of PCOS robbing me of the beautiful bond of breastfeeding loomed over me.

People see me, my bouncing babies and my ability to breastfeed and think I'm a con woman who doesn't have “real PCOS.”  I know my husband and I are very fortunate to have four children without having to endure invasive fertility treatments- but children or no children, having PCOS still sucks, the other symptoms I have can be ovewhelming and it makes navigating this world more challenging.