North Bay Woman

S P R I N G 2 0 1 5 | NORTH BAY WOMAN 19 Advil or Ibuprofen and told me, 'you'll be fine'. No one ever mentioned endometriosis." One of the first doctors she consulted suggested a hysterectomy. "I wanted to be a mom," she recalls thinking. "I spent my whole life pursuing my career and this guy was talking about giving me a hysterectomy. I felt defeated and left the room crying." The pain grew worse, month after month, and year after year, but despite all her doctor and hospital visits, and in all her online searches, she found little-to-no information. Then, in 2004, after a decade of fruitless searching for a diagnosis, she finally met a doctor who put a name to her pain. St. James had developed endometriosis, a treatable disorder that causes the tissue that normally lines the inside of the uterus, to grow outside of it. "Endometriosis grows in stages like cancer," she explains. "Had I been diagnosed in the early years of it, I could have caught it at stage one, but I was diagnosed at stage four." Her case was so advanced that it had involved her ovaries, uterus, fallopian tubes, colon, rectum and abdomen. "It was everywhere," she admits. And, thus started her journey through endometriosis. Her first surgery took place in Southern California with a doctor who specializes in minimally invasive excision surgery. Then, she went to Japan to perform in "Hollywood Hi-Tones", a doo-wop group for Universal Studios, for a year, but nine months into it she was in more pain than before the surgery. In 2006, she flew to Bend, Oregon, to undergo her second surgery, this one with a leading specialist in endometriosis. "I was already booked for "The Color Purple" and it was literally just weeks before I had to go to Chicago for rehearsals," she recalls. "I had the surgery so I could do the musical without pain, but then my bladder was damaged and I had to wear a catheter and urine bag." Six months into "The Color Purple", her pain flared up again. She used high doses of narcotic painkillers and retreated to emergency rooms on her own. "I didn't want anyone on the show to know because I didn't want to be blacklisted for being sick," she says. "But I suffered horrific pain through two years of The Color Purple. It was the darkest time of my life." She returned to New York where she met and married her husband, a businessman from Miami, and she stopped traveling to restore her health. "I had worked so hard for so long but my body was shutting down," she says. The couple moved to the Bay Area where she underwent In Vitro Fertilization treatments, but they failed and she was put on Lupron, a drug to induce menopause. What she didn't know at the time, she says, "is that IVF treatments can feed endometriosis." In 2012, she flew to New York to face her third surgery. It took 12 hours and resulted in a complete hysterectomy. "After that, the nightmare began," she says. "I lost a lot of blood and my bladder began leaking. I had a blood transfusion and another surgery a few weeks later to repair it." She didn't leave the hospital for three months, and in those months, had three additional surgeries. She left the hospital at 92 pounds, still very ill, and she and her husband returned to the Bay Area to live. "I had come to terms that I would never have children," she says. "I had lost it all and I didn't want to work." Instead, she focused on recovering her physical health and emotional and spiritual wellbeing. Her journey is one that she doesn't want other women to experience. "I want them to know that endometriosis can be treated; it just needs to be caught early. "More women have endometriosis than breast cancer yet most women haven't even heard about it," she says. "More than anything, I want them to know they're not alone, that they don't have to suffer in silence, they should trust their intuition and not take 'no' for an answer." She also believes women should insist upon a laparoscopy, rather than rely on a PAP smear or ultrasound. And, "birth control pills, she says, "are just patches." As for the medical profession, she would like to see more literature displayed in waiting rooms. "Endo is the most common cause of infertility and yet, when I went to gynecologists or Planned Parenthood, there would be brochures on sexual diseases but nothing on endometriosis," she says. In fact, she wants everyone to learn more about it. "Every man and woman should take a moment and Google endometriosis, because it's more than likely that someone they know is, or will be, affected by it and they may be able to help them catch it early," she says gravely. Life after healing As part of the healing process, she created Amazing Fairytale parties, headquartered in Santa Rosa. "It was supposed to be a small hobby until I went back to acting, but it >> Stephanie St. James, in rehearsal for her role as Mimi in "Rent," a Sixth St. Playhouse production in Santa Rosa. – Photo by Eric Chazankian

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