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Logo of D.E.S is it, DES Action group in France (Diethylstilbestrol)

Consequences of diethylstilbestrol (DES) exposure for mothers

"DES Mothers": the first generation exposed to diethylstilbestrol

Diethylstilbestrol (D.E.S.) is a synthetic estrogen created in 1938 and prescribed between 1948 and 1977 in France to prevent miscarriages and premature births, to treat gynecological hemorrhage and to inhibit lactation.

The exact number of women who have received DES is not known, but it is estimated that between 5 and 10 million women are concerned worldwide, including around 200,000 pregnant women in France.

DES has been marketed in France under the brand names Distilbène®, Stilbestrol-Borne® or Furostilboestrol® (delayed-release form), by various pharmaceutical companies.

Health consequences of diethylstilbestrol exposure for DES mothers

Women who took DES while pregnant have an increased risk of developing breast cancer1.

DES injections have also caused endometrial proliferation2,3.

An increased risk of endometrial cancer has also been observed in women treated with DES for gonadal dysgenesis, as well as menopausal symptoms.4.

Relations between exposure to DES and ovarian and cervical cancers have been highlighted, although the current data do not allow firm conclusions4.

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Interview with a DES mother, worried about her child's potential sterility, Antenne 2 Midi (french TV channel). INA Archives. 1983.

Health recommendations for DES mothers and women who have received diethylstilbestrol (DES)

Health recommendations for DES mothers and women who have received diethylstilbestrol

There are no official recommendations in France for women who have received DES during or outside pregnancy.

Thus, the recommendations you will find below are taken from the guide "CARING FOR THE DIETHYLSTILBESTROL EXPOSED PATIENT - DES Mothers, DES Daughters, DES Sons, DES Grandchildren, & DES Exposed", produced by the American association DES Info and the Diethylstilbestrol (DES) International Information and Research Group, itself based on the recommendations of the National Cancer Institute (NCI).

Women who have received diethylstilbestrol are encouraged to perform:

  • Monthly self-breast exams5. This examination consists of carefully palpating the breasts — including the nipples, clavicle and armpits — in search of any deep-seated or superficial abnormalities. 
    If you notice any abnormality, such as changes in the shape, size and color of your breasts, puckering or bulging of the skin, scaling or a rash on your nipples, redness, soreness, rash or swelling... make an appointment with your doctor.
  • Annual breast screenings (included in the annual gynecological exam)5.
  • The guide recommends yearly clinical breast exams5, which essentially consists of a mammogram. In France, screening mammography is usually offered every two years to women between 50 and 74 years old. We recommend that you ask your doctor for medical advice. He will be able to determine the necessity and frequency of this examination, and may prescribe others in addition (ultrasound, MRI scan, ...).

Notes & references

  1. Hilakivi-Clarke L1, de Assis S, Warri A. Exposures to synthetic estrogens at different times during the life, and their effect on breast cancer risk. J Mammary Gland Biol Neoplasia. 2013 Mar;18(1):25-42. doi: 10.1007/s10911-013-9274-8. Epub 2013 Feb 8.
  2. Ehrhardt, K., Kramann, H. und Schaefer, H., Vorläufige klinische Ergebnisse mit oestrogenen stilbenpräparaten. Münch. Med. Woch.; 86, 261-262, 1939; Tietze, K., Zur Einführung der Cyrens in die Therapie hormonalen Strörungen der weiblichen Genitalfunktion. Geburtshilfe und Frauenheilkunde, 1, 486-490, 1939.
  3. Schockaert, J. A. et Ferin, J., Acta Brevia Neerlandica, 1941, XII, 1-3.
  4. a b Cancer environnement. Diethylstilbestrol (DES), Mise à jour le 24 juil. 2019.
  5. a b b CARING FOR THE DIETHYLSTILBESTROL EXPOSED PATIENT - DES Mothers, DES Daughters, DES Sons, DES Grandchildren, & DES Exposed. DES Info Association & Diethylstilbestrol (DES) International Information and Research Group - JUNE 20, 2023.