DES Daughter Amy Sayers Shares Book Excerpt on DES

DES Daughter Amy Sayers traveled the painful road of infertility that many other DES Daughters have had to travel. Sayers found some healing in writing and is writing a book about her experience of learning how DES affected her and her eventual adoption of a daughter. Below we share an excerpt from her book, “Soul Rising: A Journey Through Infertility to Adoption,” for which she is seeking a publisher. Her words will likely ring true for too many other DES Daughters.

For two years I devoted myself to the process of in vitro fertilization and it took me down a black hole. I always knew I was a DES daughter, but I didn’t know that birthing my own child was impossible. Back in 1996, when I had finally gotten married, my greatest desire was to have a family, and to find grace. The story is one of longing, hope, despair and magic. The outline is that of a fairy tale…

One day, while walking in the forest, a girl trips and falls. As she lies on the cold hard ground, she hears a voice whisper in her ear,
“I am the worm of past regrets.”
“What do you want?” she asks.
He answers, “Give me your secrests, your shame and your lies, and I shall feel replenished.”
The girl is frightened and tries to scream but her mouth freezes. Suddenly she feels her body twist and turn as the worm makes his way through her depths.
His voice hisses, “Be silent. I am here to reconfigure you.”
The girl falls into a deep sleep. While she sleeps, she dreams… .

Two years later, she is lying on a table in a doctor’s office, hoping for the magic answer to her prayers…

…the nurse returns and brings us unto the room. She tells my husband Gavin to sit in the chair next to the exam table. It feels dark and crowded in there. On the other side of the table is a screen, behind which is a dark room with medical machinery.

“Lie back and put your feet in the stirrups,” says the nurse. “I’m going to prep your cervix with a little lidocaine – it might pinch a bit.”

She inserts a Wallace catheter, which measures the

depth of the uterine cavity. The cold metal pushing against my cervix causes my uterus to cramp. She calls for the doctor and he appears from behind the screen. He inserts the hysteroscope.
“Wow,” he says. “Look at all the scarring. Have you been pregnancy before?”
“Ever,” I answer.
“Are your a DES daughter?”
“A DES daughter? Yes, yes I am.”
I feel the table quake beneath the weight of his words.
“Why? Why did you ask that?”
It was all I could do not to double over and vomit.
“Too much scarring.”
“But I had surgery to remove the scarring,” I protest.
As he pulls out the speculum he says, “This is very typical of DES scarring. We’re talking surgery of surrogacy. This uterus will never support a pregnancy. You’ll never be able to carry a child. ”
He pulls out the scope, takes off his gloves, and says to the nurse, “Get them over the the Surrogacy Clinic. Have them talk to Helen.”

Here is what I learn when I start researching DES. My malformed uterus is not really fixable, and ther is no mention of DES exposure, before or after the surgery, in my medical records. Like a worm, DES reaches into the fetus and wreaks havoc. It changes the cellular structure of feminine (and masculine) reproductive organs, weaves a webbing of scar tissue, causes clear cell adenocarcinoma, and has been linked to breast cancer as well.
This worm infects the DNA and is carried on through one generation to the next. It is common knowledge that the twisting and scarring of Fallopian tubes is characteristic of DES exposure, as was my misshapen uterus. Yet even though the research had been published as far back as the 1970’s, none of the IVF doctors in 1996 mentioned DES as the source of my infertility.