DES Pregnancy

While pregnancy is probably the most beautiful experience of a women’s life, a DES pregnancy is not. For DES daughters (women who have been exposed to DES or diethystilbestrol prenatally), it’s more often than not the most troublesome time.

For some of us, getting pregnant is even impossible due to congenital uterine anomalies caused by DES exposure.

A DES daughter has been stolen the right to a “normal” pregnancy, the right to enjoy what is for the majority of women the most magical time.

For many reasons (not only medical but also psychological), a DES pregnancy is not like any other pregnancy. DES daughters require high risk obstetric care, early confirmation of pregnancy and psychological support throughout their pregnancy due to an increased risk of complications.

DES Pregnancy Risks

Your particular circumstances will need to be determined by your doctor, but DES daughters have a higher risk of ectopic pregnancy, recurrent miscarriages, and premature labour.

The types of uterine abnormalities which may have been caused by DES exposure and may affect your DES pregnancy include:

• Bicornuate Uterus – also known as horned-uterus or heart shape uterus, this type has two cavities joined together (whereas a typical uterus has a single cavity). The primary risk associated with a bicornuate uterus is of preterm labour and possible cervical insufficiency (not first-trimester miscarriages). Cervical insufficiency and preterm delivery can potentially cause a second-trimester miscarriage or loss at birth if the baby is born too prematurely, such as before 24 or 25 weeks of pregnancy (the point at which a premature baby can potentially survive). Some women may need a cervical cerclage, a stitch placed in the cervix to stop premature dilation, which is what can cause premature delivery and possible late pregnancy loss. Treatment is via reconstructive surgery and depends on the physician and the circumstances of each situation.
• Septate Uterus – Women with a septate uterus have a band of tissue called a septum running down the middle of their uterus. Pregnancies that implant on the septum are thought to be at higher risk of miscarrying because the placenta cannot develop properly and access nutrients. Women with septate uterus who do not miscarry may be at increased risk for preterm labour and having a premature baby. Treatment is via surgery.
• Cervical Insufficiency – condition where the cervix begins to dilate in pregnancy (without contractions) before the baby is ready to be born, such as in the second trimester. Depending on what point in pregnancy this occurs, cervical insufficiency can lead to miscarriage, stillbirth, or preterm delivery.

Doctors can get an idea of whether a woman has a bicornuate or septate uterus by using a hysterosalpingogram (HSG) or a hysteroscopy.

Despite a septate and T-shape uterus treated via surgery by Pr. René Frydman in 2002, I gave birth to a beautiful little girl in 2003. My first DES pregnancy was a very stressful but successful pregnancy. Today I am one of the luckiest DES daughters blessed with 3 daughters. So even if the Diethylstilbestrol side effects and the above consequences of Diethylstilbestrol exposure are frightening, I would like to send a message of hope to all DES daughters out there who are trying for a baby. My DES journey is one of many other successful Diethylstilbestrol pregnancy stories. So keep hope! Not all DES pregnancies start with an ectopic pregnancy or end with a miscarriage or premature labour and their dreadful consequences.

If you know that you’ve been DES exposed and are trying for a baby, make sure you tell your doctor and demand proper DES pregnancy care and monitoring. If you’ve experienced complications during pregnancy, talk to your mum and your doctor about DES. Contact your local DES Action groups for support and professional advice.

Read more information about Diethylstilbestrol DES and pregnancy studies.