When I discovered that I was a DES daughter, I became an informed health care consumer and advocate. Here are some facts that every practitioner should know about the prevalence of DES exposure and the significance it holds for your patients.
The Pelvic Exam for a DES Daughter
The recommended pelvic exam for a DES daughter is different from a routine exam. In the routine exam, the Pap smear is taken only from the cervix, but in a DES exam, a separate Pap smear is taken from the surfaces of the upper vagina as well.
It is recommended that DES daughters have a gynecological exam once a year (beginning at puberty) consisting of:
* A thorough pelvic examination, with a visual examination of the vagina and cervix for particular abnormalities;
* A cervical Pap test;
* A vaginal Pap test taken from all four quadrants of the vagina;
* Palpation of the walls of the vagina, uterus, cervix, and ovaries to check for lumps.
* The initial DES examination should include iodine staining of the cervix and vagina to check for abnormal tissues or noncancerous abnormal growths of glandular tissue.
* A colposcopy may be necessary when there is change in the vaginal or cervical tissue, or an abnormal pap smear.
DES Daughters At a Glance
DES daughters have an increased risk of infertility, ectopic pregnancy, miscarriage, menstrual irregularities, preterm labor, and increased incidence of abnormal pap smears and cervical carcinoma in situ.
Twenty-five to 40 percent of DES daughters experience structural abnormalities of the uterus, cervix, or upper vagina. This includes a T-shaped or small uterus, or developing a growth on the cervix known as a "cervical hood."
DES daughters have a higher-than-average risk of developing a rare cancer called vaginal clear cell adenocarcinoma (1:1000). Clear cell adenocarcinoma most commonly affects young women (age 15 through the early 20s), but has been found in DES daughters between the ages of 7 and 42.
Helping Your Patient Learn DES Status
Patients born between 1941 and 1971 may be unsure if they are DES-exposed. You can assess whether there is evidence of any change in your patient's reproductive tract.
As this cohort ages, it becomes more difficult to obtain information. If your patient is unable to ask her mother, she may want to ask her relatives about her mother's history of pregnancy. If she was prescribed any medication to prevent miscarriage or improve the pregnancy, this may indicate DES exposure. It may be impossible to access old medical records. Some hospitals keep records for 30 years or more, while others do not. In addition, medical records are legal documents protected by privacy laws. Your patient may find that only her mother can obtain these records.
What About Legal Action?
While there has never been a class-action lawsuit, many DES-exposed patients (mostly daughters) have individually sued the drug companies that manufactured DES and have obtained compensation. A patient's ability to sue depends on many factors. You can refer your patient to DES Action.
Stay Informed
This year, the Centers for Disease Control and Prevention (CDC), using funds from the United States Congress, launched the DES Update Web site. In addition to providing resources to individuals who were pregnant or born during 1938-1971, health care providers can access educational materials such as DES case studies, presentations, and self study materials by visiting http://www.cdc.gov/DES/.
RESOURCES:
http://www.descancer.org/care.html
http://www.injuryboard.com/view.cfm/ID=678
http://www.aaronlevinelaw.com/des2.htm
http://www.desaction.org/desfaq.html
http://www.cdc.gov/DES/