Print URL:

Unresponsive doctors and others who don't understand add to the anguish endured by women with endometriosis.

By Eve Edelheit, Times Staff Writer
Published: March 2, 2017 Updated: March 2, 2017 at 05:28 PM
Eve Edelheit poses for a portrait in her apartment in St. Petersburg on February 1, 2017. She felt trapped in her apartment for months in 2016 after her endometriosis surgery took a bad turn and put her on bed rest for nearly 10 weeks.

I couldn't believe it was back.

I was in Jacksonville, about to photograph my first out-of-town college football game as the solo shooter, and there I was, crying on the floor of the media bathroom, clutching my abdomen. It felt as though a shadowed figure was stabbing me again and again. I gripped the toilet bowl to try to stand but was frozen in pain.

I'd had surgery three years earlier to make that feeling stop. But endometriosis has a habit of coming back for more. It develops when the lining that's supposed to be inside a woman's uterus grows on the outside instead. That tissue thickens. It gets trapped in places it doesn't belong, irritating organs, forming scar tissue and cysts. Mine had left little cysts all over my uterus, bladder and ureter, making every menstrual cycle feel like I was passing a kidney stone.

You can't talk about endometriosis without talking about your period. Hormones from that time of the month command the misplaced tissue to break down as if it were a normal uterine lining, except instead of breaking down, these cysts just stay where they are and inflict pain. The worst days found me in bed, unable to move.

I chose to live in pain for more than a year rather than schedule a surgery. I withdrew from my friends and fell into depression. My work suffered; it was hard to stay present, to be ambitious, when I was so distracted. I was lashing out at my fiance, who bore the burden of being my caretaker. Questions kept me awake: What would it mean to miss so much work? Could I continue on a career path that I loved so dearly but that was so physically demanding? Would I ever be able to get pregnant? Even if I had surgery, would the pain just come back again?

So many people have no idea about this disorder that afflicts millions of women around the world. That's why I set out to do this photo essay. I joined online support groups and found others with stories just like mine, others who have suffered with perhaps the worst symptom of this disorder, loneliness.

SPECIAL REPORT: Worse than pain? The shame