Norman - Ask me about my uterus: a quest to make doctors believe in womens pain

Each patient carries his own doctor inside him.

Norman Cousins, Anatomy of an Illness

I T IS MY SINCEREST HOPE that some of what is in this book will no longer be applicable by the time its in your hands. Though a work becoming outdated may be embarrassing to some authors, as someone who is ill, I would be overjoyed if, in the time it took for this book to be published, science and society will have found answers to some of the questions I grapple with in these pages.

This book could never be fully comprehensive, and the research Ive chosen to include represents only a fraction of what I encountered as a young patient parsing through it. Despite my determination, much to my dismay, I could never know all that there was to know, and as a reader I hope you will view all that I have written with a keen and critical eye. It was very important to me that I produce a portable book, so my ambition was not to provide a comprehensive history or review of the literature pertaining to women, illness, and pain. Rather, it was to provide some starting points from which you might seek to ask further questions and discover better answers.

Although this book includes research and interviews, I have framed the conversation around my own experiencenot because I believe I can speak for anyone else, but because it seemed important to use the platform I have been given to call out the injustices I have observed (and in some cases experienced firsthand).

When debating the title for this book, I worried that it would be viewed as exclusionary to those who identify with the struggles portrayed but who do not have a uterus. I am firm in my conviction that endometriosis is not a uterine-dependent diseaseas firm as I am in my conviction that not all women have a uterus and not all those who have a uterus identify as a woman. I do identify as a woman, and in telling this story I had to acknowledge what that identity meant in my journey. In the grander scheme of things, however, it should be noted that by no means is my having a uterus (for the time being, anyway) a requirement for my female identity, any more than it would be for anyone else.

I do not wish to become a poster girl, or the voice of anything depicted in this book: my experience is just one of many, and it is also one that benefited from the privilege of being a white woman. Where I have acknowledged how race and gender identity factor into my experiences in the broader sense, I have done so with the knowledge that there are others who could tell their own stories. We need to actively seek them out and listen to them.

Of course, there could never be one voice, or one story, that is wholly representative of the issues that are discussed in this book. But the voices of those who need to tell their stories have long been silenced. I offer up my own account to join what I hope will become many voices demonstrating the complexity of these issues, of ourselves, and of the fierce will of the human spirit.

In the same way that this book could never address all the research, it could not address every single event or person or conversation. I have, for the purpose of narrative and consideration for people involved in my story, obscured peoples identities, changed their names, and occasionally altered times and places (including those of all my doctors). The dialogue included in this book most often came directly from journal entries written promptly after the events described, though a few of the more recent ones are re-created from my memory. Interviews were recorded, transcribed, and condensed for inclusion, or, in some cases, conducted via online exchanges.

Finally, it should be noted that any and all references to The X-Files or any other popular cultural phenomenon are not nearly as gratuitous as they may at first appear.

Abby Norman

June 2017