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.

I launched this website on Monday, July 13, and, the following week, I searched the Internet to see if my site popped up when I input varying search terms, related to my content.  The first I typed in was “T-shaped uterus.”  While scrolling down page after page, I didn’t find my site; however, I did come across the website of DES Action USA, a nonprofit organization that provides support, information and advocacy for individuals affected by exposure to the synthetic estrogen drug diethylstilbestrol (DES).  The website is www.desaction.org.

Under the tab DES Daughters, defined as “women whose mothers were given DES while pregnant with them,” the following risks are listed:  clear cell adenocarcinoma—cancer—of the vagina and cervix; breast cancer; structural changes of the reproductive tract, including the vagina, cervix, uterus, fallopian tubes and ovaries; having a T-shaped uterus, which increases the likelihood of incompetent cervix, which can result in pregnancy loss and pre-term delivery; infertility; ectopic pregnancy; preeclampsia; endometriosis; uterine fibroids; paraovarian cysts; and early menopause.

When I was 20, I saw a new gynecologist who took one look at my private parts, then asked if my mother had any trouble getting pregnant.  I said no, that I was conceived three months after my parents were married.  She said that my vagina was “different from everyone else’s” and that it could be a result of my mother having taken medication while she was pregnant with me.  I discounted it, because my mother hadn’t had trouble conceiving and because the doctor never mentioned any other risks that I should be aware of.  And, I had the self-esteem of a garden slug at the time, so I lacked the confidence to advocate for myself, to ask questions.  I didn’t even have the nerve to ask her what was wrong with my vagina, what about it was “different from everyone else’s.”  I waited a whole year, paranoid, wondering in what way or ways my vagina was freakish, until my next annual exam, where I finally asked specifically what was wrong.  She explained that I have an extra flap of skin, but not to worry about it.  She said that just like people have different shaped noses, all of which serve their function, my misshapen vagina, while “different,” was fully operational.

Fifteen years later, after not successfully conceiving during four IUIs, my doctor performed the HSG that showed my T-shaped uterus, one-third normal size, because, as she explained, it never developed fully while I was in utero.  When I researched the T-shaped uterus and its ramifications online, I found a website that said that .01% of women have uterine abnormalities, and there are seven different kinds, one of which is the T-shaped variety.  And, my doctor told me that I had the only kind that “can’t be fixed.”

So, not only did I have the extraordinarily rare T-shaped uterus, but also the double whammy of abnormal vagina and underdeveloped uterus.  (Because my son stretched out my uterus during his nine months in it, my uterus is no longer T-shaped, but now arcuate.  In short, it’s still small and abnormally shaped, but now less so.)

The DES Action website information made me pretty confident that I am a DES Daughter, but what was most upsetting to me was the revelation that DES exposure can affect the third generation, as in my four-year-old son and my future son(s), if this IVF cycle is successful.  (I had two boy embryos transferred into my uterus last Thursday, August 6.)  Eager to gather as much information as I could, I immediately mailed an order form and check to DES Action for the book DES Voices: From Anger to Action.

A few days later, DES Action’s Executive Director Fran Howell e-mailed me, offering to put together a packet of information, if I would let her know of any specific DES interests and needs.

I responded, “I believe I was exposed to DES because I have a T-shaped uterus and abnormally shaped vagina.  My mother has no memory of taking anything during her pregnancy, and I’ll be 41 tomorrow, so medical records likely don’t exist anymore.  But, I have a 4-year-old son and am going through IVF trying to have another child, and the information on your site is the first I’ve ever seen of DES exposure affecting grandchildren.  So, anything you can send about DES infertility, cancers and DES grandchild issues would be great. Thanks much.”

She replied, “First, it is highly unlikely you’d be able to get your mother’s medical records. I am not kidding when I tell you how many ‘fires and floods’ afflicted medical offices when DES Daughters requested records.  There is no real marker for DES exposure.  A T-shaped uterus is the closest there is. That abnormal shape does not appear in nature and was not documented as occurring before DES was given to pregnant women. Not all DES Daughters have it, but those who do are considered to be DES Daughters. (Dose and timing of exposure affect what problems were caused by the drug).”

I received Fran’s packet of information a few days later and was disturbed by a newsletter article about the link between Clomid® and uterine cancer.  I took Clomid during two of my IUI cycles. 

I reacted to an article titled, “DES Daughters at Increased Breast Cancer Risk after Age 40,” by scheduling a mammogram two days prior to my embryo transfer, knowing that, if I’m pregnant, I can’t be exposed to radiation for nine months. (I got my mammogram results yesterday, and they were normal, thank God.)

I received the book, DES Voices, the day of my IVF embryo transfer, a day I was supposed to rest, and I’d finished it by 4 a.m. the following morning.  In the past few days, I’ve also read three other books about DES and the results of exposure to it.   The most recent, just released, is what i thought i knew, a fantastic memoir by Alice Eve Cohen.

What I’ve learned is that U.S. companies didn’t adequately study the synthetic estrogen DES, which was created in 1938, and the research that was done showed cancer and reproductive abnormalities in mice and other animals.  Yet hundreds of companies distributed DES under hundreds of different brand names until it was “contraindicated for use in pregnant patients” in the United States in 1972.  It was used elsewhere even in the 1980s. 

DES was considered a wonder drug, even though no research backed up those claims.  It was given to women who had prior miscarriages.  It was given to women with no pregnancy problems, so that they would have “big, healthy babies.”  It was put into prenatal vitamins, making women unaware they were taking DES at all. 

It didn’t prevent miscarriage.  It provided no benefits to pregnant women or their offspring whatsoever.  What it did do is increase the breast cancer risk of the women who took it by 30%.  It passed through the placenta into these mothers’ sons and daughters, forever changing the development of their bodies, creating numerous abnormalities that have resulted in shame, infertility, cancer, and death. 

I am a DES Daughter.  And, I will do everything I can to protect myself; my mother; the two of my four brothers who may have been exposed; my nephew and nieces who might be DES grandchildren; my son, a DES grandson; and my future son(s), if I am pregnant now.  (My pregnancy test is next Monday, August 17.)

To learn more about DES, you can click on the links for DES Action USA, The DES Cancer Network, and the Centers for Disease Prevention and Control’s DES Update, all of which are listed on the right side of this Home Page, under DES Links.

NOTE:  This post was reviewed for accuracy by Fran Howell, Executive Director of DES Action USA.  My sincere thanks to Fran.