A String of Pearls I Could Live Without

Welcome to the 2014 Voices of PCOS blog series at The Infertility Voice, in honor of PCOS Awareness Month!

A String of Pearls I Could Live Without

By Becky Evans-Wilson

When most women think of inheriting a string of pearls, they think of old Hollywood glamour or southern genteel elegance. They dream of the beautiful heirlooms their mother or grandmother wore, a piece they might have envied as a child. In my case, my inheritance was much less flashy and desirable. It was a burden that weighed me down for years.

Two years ago, my OBGYN, Dr. S., cut through the murky waters of my nearly decade-long failure to get pregnant with some routine tests. It all came down to one diagnosis, characterized by a “string of pearls” on my ovaries. I am one of the nearly 5 million women in the United States with PCOS or polycystic ovary syndrome.

PCOS is caused by a hormonal imbalance and can be characterized by irregular menstrual cycles- something I had dealt with since adolescence, as well as insulin resistance and/or excess androgens. Not only do women with PCOS deal with menstrual issues, many also deal with weight gain, difficulty losing weight, unwanted facial hair and more. Women with PCOS also have increased risk factors for Type 2 Diabetes, as well as heart disease.

PCOS is as different as the women it affects, manifesting in slightly different ways in different women, making it difficult to pinpoint as a diagnosis. Many women suffer in silence, never realizing a clinical condition is at the heart of the medical afflictions they face.

Since puberty, I have carried excess weight on my short frame. I looked at the women in my family and believed it was likely just the way we were built. In truth, it is likely many of the women in my family also dealt with PCOS, just likely not to the extent to which I have.

No teenager or twenty-something wants to be overweight. I tried diet and exercise, but no matter what I did, the weight never seemed to go away. I would lose 2 or 3 pounds, then nothing. So, I gave up on myself and decided I was just meant to be fat. No one ever mentioned PCOS to me at any point in my twenties, so I stayed in the dark, beating myself up for my weight. My first GYN did not mention it, even though I had most of the prime characteristics of a PCOS case. It was only Dr. S. who began to put the pieces of the puzzle together for me.

After many years of private failure, I spent roughly a year working with Dr. S. to try to get pregnant. Dr. S. was optimistic I would get pregnant, since my PCOS presented as a “classic” case. I had outpatient surgery and did six rounds of Clomid under his care. When the first line fertility drugs failed, Dr. S. recommended a local, university affiliated reproductive endocrinology facility (in other words, a fertility clinic).

I was assigned to a young doctor, who told me I would be given the “standard protocol” for PCOS women. But, he made sure to let me know I was seriously overweight and needed to “do something about it.” No help, no suggestions. Just take care of it.

I spent the next year beating myself up again. I took increased dosages of fertility drugs and threw away thousands of dollars on fertility treatments that weren’t successful while my RE assured me the “standard protocol” was the best. I kept asking questions about things that didn’t seem to make sense, but each time he shut down the dialogue. In short, it was one of the most stressful periods of my life, a time which made me doubt everything about myself.

At the end of that year, I was more upset than I had been in the previous 8 years of trying to get pregnant. My RE suggested we discuss all of my options. But when I went to the appointment, there were no options. There was one plan from my RE: bariatric surgery, requiring two years of recovery and likely IVF afterward since I would be over 35.

I walked out of that office numb to the world. My lifeline, my only source of help in conquering infertility, was telling me he refused to help me unless I had an invasive surgery I didn’t want. He had no other suggestions. Since the standard protocol didn’t work for me, I needed to become more like the standard. I had no idea what to do next, but I knew bariatric surgery wasn’t right for me.

In the end, I guess I have to thank that cold doctor at the Big Fertility Clinic. He inspired me to get informed and to find my motivation to say “I told you so.” Over the last six months, with the help of Dr. S. and my husband, I have changed my life and managed to drop roughly 60 pounds. I educated myself about my condition and have learned to give my body what it needs and what it can use.

Each time I want to give up at the gym, I see the face of that doctor who didn’t believe in me and I continue to push forward. I found a new reproductive endocrinologist who sees me as Becky, not “standard PCOS patient X.”

I have confronted PCOS and am winning, despite a decade of failure.

My story doesn’t yet have a happy ending. I’m not at my “goal” weight and I am not pregnant. But I feel good! I am planning to run a 5K next spring, something Old Becky never could have done. I’m facing the reality that more fertility drugs and more advanced fertility treatments are the next phase of my path toward parenthood. I’ve even started to make peace with the notion that adoption could be our path toward the family we’ve always wanted.

For me, PCOS and the related infertility will always be one of the most formative challenges of my life. But, like all of the women who face this condition, I cannot be measured against a standard. There is no model for PCOS survival. Those of us who face PCOS and infertility are all unique individuals who find the strength to love ourselves and thrive despite the difficult hand we’ve been dealt.

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Becky Evans-Wilson is an English teacher, infertility blogger, cool aunt and reluctant exercise enthusiast. She and her husband, Jeremy, are working toward giving their rescued fur-baby, Fred-the-Pekingese, a human brother or sister.