Cysterhood:
Living with PCOS at the Intersection of Feminism, Medicine, and Medical Research

My ovaries tried to kill me on more than one occasion. It’s hard not to take that personally.

I’ve known I have polycystic ovary syndrome (PCOS) since I was diagnosed at age 12. And while PCOS is one of the most common reproductive disorders in the world, I had no idea as a pre-teen what the quest for treating this disorder would lead to over the course of my life. I still have PCOS even though I’m in my 60s and my reproductive organs have been removed.

This memoir delivers these messages:

• Timing is everything. At every stage of my life, my treatment for PCOS was affected by the state of women’s medicine—what doctors knew at the time. Research into all women’s health issues—not just PCOS— is historically underfunded.
• My health care benefited from the work of women I never met. Second-wave feminists helped increase the number of women in medicine, increased research funding for women’s health, and pushed for legislative changes that improved women’s lives in direct and indirect ways.
• Individually, every woman must tirelessly advocate for her own health/medical care. Collectively, women should advocate for reforms that benefit all women.
• A woman can only make good decisions about her health care if she has good information. Ultimately, she needs to clearly understand what she doesn’t understand.

Reading medical memoirs can humanize an illness, a statistic, a decision, an outcome. People read memoirs about their illnesses in order to understand what is happening to them: to make peace with what they’ve already been through, to validate how they are feeling about their illness or their medical care, and to know what to anticipate in the months and years to come.

This memoir describes my life — from puberty through menopause — in which I not only learned to live with PCOS, but also dealt with infertility, cancer, perimenopause, emergency and planned surgeries, good doctors and bad, up-to-date information and crap advice. I believe every woman can find something here relevant to her own life and experience.

PCOS is different for each woman, and therefore, living with PCOS is always going to be a deeply personal journey. This was my journey.