April 11, 2005

Tales From The Crib

Endometri-who?

I bet you didn’t know that the month of March was endometriosis awareness month, did you?

Jennifer Margulis

Neither did I. In fact, other than hearing a mom mention it during a playgroup conversation in Atlanta where I was busy cutting every baby’s fingernails (their own moms were worried about nicking tiny fingers and happily handed the clippers over to me), I barely knew what endometriosis was until this week. Then I picked up Jen Singer’s book of essays, 14 Hours ‘Til Bedtime: A Stay-at-Home Mom’s Life in 27 Funny Little Stories. In the front of the book Singer explains that she has been suffering for years from endometriosis and that a portion of her book sales will go to support the Endometriosis Association.

For Singer, it all started when she was 12 years old and had her first period. Her periods were so painful that she would have to miss school. “I would have to lie face down on the ground and not move for hours,” she explained to me in a phone interview from her home in Kinnelon, New Jersey, adding that she missed Thanksgiving dinner when she was 16 because she was in too much pain to come to the table.

Four laparoscopies and a variety of other treatments (including a partial hysterectomy) later, Singer, now 38, is still experiencing pain. During her first “lap,” as she calls it — this procedure is also known as “belly button surgery,” as an incision is made in the belly button — her doctor took out much of the endometrial growths that were causing her pain. He also mistakenly took out part of her bladder. “My bladder’s like the moon now because my first doctor cut craters out of it,” she told me.

The growths that Singer had removed from her bladder and elsewhere are what causes the terrible pain and fatigue that accompanies endometriosis. Tissue that is found in the uterus starts growing elsewhere — on the ovaries, in the abdomen, in the areas between the vagina and the rectum. Each month, in response to hormones of the menstrual cycle, this tissue builds up. But unlike with regular endometrium found in the uterus, the tissue cannot break down and leave the body through the vagina. The result is internal bleeding and inflammation, which can lead to chronic pain and a host of other problems.

What does the pain feel like? “Put it this way, I didn’t know that I was in the final stages of labor with my second child because I was waiting for it to be the worst pain of my life, but it wasn’t,” Singer said. “It’s like labor but it’s constant.”

Singer told me that she decided to donate proceeds from book sales to the Endometriosis Association because women are suffering in silence. It turns out Singer is one of five and a half million American women who have endometriosis and, according to her, it takes up to five years for a woman to get a correct diagnosis. “Doctors tell them that the pain is just part of being a woman,” Singer said. “It’s a very tricky disease. I had one of the best doctors in New York and he didn’t know what to do with it.”

She remembers trying to schedule a colonoscopy before Christmas one year because her doctors wanted to rule out colon troubles unrelated to the endo. Everyone was booked. “All I wanted for Christmas was a colonoscopy,” she said, laughing. “I hung up and started crying.” Her three-year-old son had never seen her so upset. When he asked her what was wrong she explained, “I can’t get anyone to help me. ‘I’ll help you Mommy,’ he said.”

Through all the years of debilitating pain (which has come and gone with various treatments), Singer has managed to keep her sense of humor, and after she had two children 19 months apart, Singer started writing humor essays. “It’s therapy,” she says of her writing. “It was either that or drinking. And writing seemed to be much more productive. I started writing essays about what was happening to me. Being a stay-at-home mom isn’t the baby lotion commercial that people make it out to be.”

Living with endometriosis isn’t either. “I want to tell women pain is not normal,” Singer said, “and if their doctor is telling them that it is, find another doctor … it’s not in their heads. It’s not something to ignore.”

Jennifer Margulis is a parent educator and health advocate. The editor and co-author of “Toddler: Real-Life Stories of Those Fickle, Irrational, Urgent, Tiny People We Love” (Seal Press), she lives in Ashland with three fickle, irrational, urgent children; one steadfast, rational, and calm husband; and four wild deer.