First-Ever DES Daughter Exam Results: Cancer-Free

Late in July, at almost age 41, I learned that I am a DES Daughter, meaning that my mother was given the dangerous, reproductive-organ-deforming synthetic estrogen diethylstilbestrol (DES) while she was pregnant with me.  I’ve known since age 20 about my vaginal deformity and since age 35 about my T-shaped uterus, but no doctor had ever told me definitively that these abnormalities were the result of DES exposure, and my mother had no memory of having taken any medication during her first pregnancy.

With no knowledge of my DES exposure, I was unable to protect myself and inadvertently put myself in more danger by taking birth-control pills for more than 20 years to regulate my too-short, 20-day menstrual cycle; by injecting myself with estrogen and wearing estrogen patches for three intrauterine insemination (IUI) cycles in 2004 to combat my DES-induced infertility, resulting from my underdeveloped, one-third-normal-size, T-shaped uterus, complete with uterine lining too thin to support successful embryo implantation; and injecting estrogen for two in vitro fertilization (IVF) cycles this year, once again to overcome my DES-generated infertility.

In short, being bathed in synthetic estrogen while in utero, which puts me at increased risk of breast, uterine, cervical and vaginal cancers, screwed up my reproductive system to the extent that estrogen was recommended in order to normalize my menstrual cycle and enable me to bear children.  And, this extra estrogen has elevated all of my cancer risks. 

Only because of this website and blog, which I started immediately before my second IVF cycle, did I learn that I am a DES Daughter.  My mother has since confirmed that she did take medication for nausea early in her pregnancy.

However, only after receiving the book DES Voices: From Anger to Action from DES Action USA, the nonprofit organization whose mission is “to identify, educate, provide support to, and advocate for DES-exposed individuals, as well as educate health care professionals,” did I learn of danger of not only having taken birth-control pills, but also having undergone infertility treatments involving injectable estrogen. 

But, I received the book on Thursday, August 6, the day of my embryo transfer, so my estrogen injections had been completed a week and a half prior.  Any damage had already been done.   

Since August 6, when I had two male embryos placed into my uterus, then read DES Voices cover to cover, I have been scared that I have vaginal cancer and that, if I were pregnant, my husband and I would be forced to make a decision, depending on the severity of the cancer, about whether and how to pursue treatment based on how it would affect me and our unborn child or children.

On August 17, I received confirmation of my pregnancy.  I was thrilled, but frightened.  I shared my fears with no one, not even my husband, because I didn’t want to worry anyone needlessly. 

On August 26, an ultrasound confirmed that my high levels of Human Chorionic Gonadotropin (HCG), the pregnancy hormone, did signify twins.  Once again, I couldn’t help but be thrilled; the feeling was spontaneous.  But this news also meant that, if I did have cancer, we could put two children, not just one, at risk.

On September 18, I learned, via another ultrasound, that I had lost Baby B a few days beforehand, in his eighth week.  With this devastating news, I, who’d been feeling miraculous after weeks of positive ultrasounds, realized that I am, as we all are, immune to nothing.  Harm, loss, tragedy can forever change any of our lives—at any time.

It wasn’t until September 25, my 10th week of pregnancy, during my first examination at the Center for Maternal and Fetal Health, the local hospital’s high-risk pregnancy group, that I had my first-ever DES Daughter Annual Exam.  It is a special, more-thorough physical and pap smear designed to identify any DES-related abnormalities, particularly clear cell adenocarcinoma—cancer—of the vagina and cervix.  (For the specifics of the Annual Exam of DES Daughters, as recommended by the Department of Health and Human Services’ Centers for Disease Control and Prevention, click onto www.desaction.org, then the DES Daughter tab on the left.)

Because I’d already had an annual pap smear in May, which had shown no pre-cancerous or cancerous cervical tissue, this exam focused on my vagina, where pap smear samples are not usually collected.  And, instead of scraping off just one tissue sample, my doctor gathered four, one from each quadrant.

He also conducted a visual inspection and told me that he thought all of the tissue looked normal.  But, I couldn’t relax until receiving the lab results.

Although I have been blessed in many ways in recent years—meeting my future husband nine days before getting pregnant via donor-sperm insemination, being able to conceive and carry my 4-year-old son, when many DES Daughters remain childless, and getting pregnant, at age 41, during my second IVF attempt, in my life each and every miracle has been countered by tragedy.

I was unlucky in utero, which is an early start.  My DES exposure has negatively affected me since the onset of menstruation at age 13.  I’ve suffered from infertility.  I’ve lost seven unborn children, most recently Baby B, to whom I’d grown extremely attached, having seen him on multiple ultrasounds. 

So, with my history, I could imagine being pregnant at age 41, filled with such joy, then finding out that I have cancer.

But, my pap smear results came in while we were on vacation last week, so I now have physical proof in my hands, a lab report that definitively states, “Negative for intraepithelial lesion/malignancy.”

While my uterine abnormality still makes my pregnancy high-risk, I’ve already proved that I can carry a very large child to term, to the full 40 weeks of pregnancy.  My son was a whopping 9 pounds, 7 ounces when he was born on his due date.

So, yes, I am a DES Daughter, which has created life-long problems for me—and will continue to haunt me.  I can’t change the decisions I made before knowing my DES Daughter status.  But, now that I am informed and educated, I will protect myself vigilantly.

And, today, I’m 41, in the second trimester of my pregnancy, and cancer-free.

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