DES and Me

You could say that my infertility story officially starts with my parents.

Like some people who find themselves passing through the land of infertility, I had known for some time that I may have problems having children.  ‘May’ is a far cry from ‘will’ however, and this warning from long ago, didn’t help the current situation that I found myself in a few years ago.

In 1972, my parents had been trying to conceive for 3 ½ years.  My mother sustained a miscarriage, and was prescribed DES (diethylstilbestrol), a very powerful, very evil synthetic hormone by her doctor.  This super drug, was supposed to prevent miscarriages, and enhance pregnancy.  The facts: DES had been widely prescribed to pregnant women all over the world since 1938.  Through World War II, Sputnik, neatly dressed Beatles, and sloppily dressed Beatles, this drug was issued to mothers-to-be around the world, including my mother.  Ironically, the year I was conceived was the same year that this drug was banned and taken off the market for good.  Better late then never (ho hum).

The drug was banned due to emerging research regarding reproductive-organ specific birth defects, in so-called “DES Daughters,” and “DES Sons,” too.  The research was “emerging,” then, but has reached through the decades to me and my husband.  Lucky us!  Exposure to DES in the womb likely (although no doctor will admit it with 100% certainity) affected the size and shape of my uterus, the alignment of my cervix (oddly flush in an opening it is designed to protrude through).  For me, being a DES daughter meant that at the age of eleven my mom took me to visit a gynecologist.  I didn’t realize at that time that other girls my age weren’t doing the same thing.  I had just had my first period and thought that this visit was a natural follow-up to becoming a woman.  My mom was upfront with me and I remember her telling me about a drug that she had taken when she was pregnant with me and that as a result, I would have to make sure that I was ok.  In a recent conversation with my mother about the way in which she revealed the possible consequences of my DES exposure, I found her to be very proud of the fact that she had been so upfront with me.  It was almost like her honesty compensated for possible consequence.

I have recently discovered my little white diary with a border of pink flowers, packed in some basement boxes, and it recorded this day much like any other.  “Mom took some drug to have me.  I may get cancer.  I have clarinet lessons tomorrow.”  At eleven, obviously cancer was just as foreign a concept as having a baby and noticeably both didn’t seem to impact my eleven-year-old world in any way – that didn’t make me late for clarinet, at least.  The actual memory of that time is sort of hazy, but I think my little, white diary says it all.

Several years later, my parents went to a meeting for women who were participating in a DES exposure study coordinated by a local hospital.  I remember my mom telling me about the people there — mostly young women, although there were some men present at the meeting too.  Many women were trying to have children and the pain that filled the room was horrible, she remembered.  At the time I was still in high school and this heartache of unknown women felt very remote to my life.

Over the years, doctors would tell me that I have a small uterus and that DES daughters have increased evidence of reproductive problems, such as infertility, ectopic pregnancy, and miscarriage.  These are scenarios that didn’t mean anything to a pre-teenager.  Now, today, they are painful reminders of things that are out of my control, but are sadly, part of my life experience.  Today, as I explore some of the technologies that may allow me to have a baby, I am warned once again that DES daughters also face the risk of premature delivery and that I will be classified as a high-risk pregnancy from the get-go.  I already felt like I was covered in labels by the time we got to this point in the endless doctor appointments.  DES-exposed, older (since I was passed 30, can you believe it?!), and now high-risk for premature delivery.  Little did I know that in a few months time I would be adding premature ovarian failure and perimenapausal to my growing list of ailments?  I felt like my body was spinning out of my control, dancing randomly under the gravity of these biological obstacles.  Once we realized that we weren’t going to get pregnant the “normal way” it was like a door in the back corner of my mind opened, and every warning I had been given since the age of eleven rushed in and came crashing through to the present, my reality.  I have remarked to my husband on several occasions since we started this whole process that I wasn’t sick; we just wanted to have a baby.