Diethylstilbestrol Side Effects

Were you born, or pregnant, in the 1940’s, 50’s, 60’s, 70’s or 80’s? If so, you may have been prescribed DES (diethylstilbestrol, stilboestrol, stilbestrol, Distilbène®) during pregnancy, or you may have been exposed to DES in the womb. The devastating diethylstilbestrol side effects which have been discovered to date include but are not limited to the following:

Diethylstilbestrol side effects for DES Mothers:

DES diethylstilbestrol side effects image
Diethyl-Stilbestrol Australian tablets. Image courtesy of DES France.

DES mothers have an increased risk of breast cancer and should do a regular self examination of their breasts.

They should be cautious about using Hormone Replacement Therapy (HRT) as some doctors believe that the carcinogenic effects of hormones may be cumulative.

Side effects for DES Daughters:

Many but not all DES daughters have abnormalities of the vagina, cervix, uterus and fallopian tubes. They may have a Y-shape or T-shape uterus like mine.

A may suffer infertility and / or DES pregnancy problems including ectopic pregnancy, premature labour or miscarriage.

Many DES daughters have adenosis. This is a type of tissue not usually found in the vagina, which can cause discharge. Adenosis may revert to normal tissue but DES daughters should be monitored for the presence of adenosis as changes may indicate the beginnings of a rare form of vaginal cancer called adenocarcinoma (CCAC).

A cervical smear is not adequate for DES daughters as a concentration on the cervix means that vaginal abnormalities may be missed. A DES examination includes colposcopy (examination by microscope of the vagina and cervix), smears taken from all four vaginal walls and the cervix, an iodine test to identify areas of adenosis and a full pelvic examination. DES daughters should receive DES examinations annually.

Because of the cumulative effects of exposure to hormones, some doctors think DES daughters should not take the combined contraceptive pill, or receive hormonal treatment such as medicines to reduce ovulation or for in vitro fertilisation.

Diethylstilbestrol side effects for DES Sons:

DES sons may also suffer genital malformation and infertility problems; some of them have a low sperm count.

DES sons should regularly examine their testicles as there may be an increased risk of testicular cancer.

DES side effects for DES grandchildren:

Studies of DES grandchildren are just getting underway. Scientists are currently investigating whether DES grandchildren have been affected by the drug given to their grandmothers. As study results come in, there is growing evidence that this generation has also been adversely impacted. Some DES daughters are currently participating in the long-running National Cancer Institute DES follow-up study. Further research is much needed but so far it has been reported the following:

  • Delayed menstruation regularity
  • Higher infertility rate
  • Higher rate of tumour growth
  • Overall cancer risk
  • Greater risk of hypospadias in sons of DES daughters (condition where the urethral opening on the penis is in the wrong place)

DES Action USA has developed a brochure written specifically for DES grandchildren. Visit their website to download a copy of the brochure. Currently there are no special health screenings identified for DES grandchildren but you should tell your doctor about your concerns and potential risks.

Whether you know for sure or suspect you were exposed to diethylstilbestrol, you can use CDC’s DES Update to learn more about DES exposure and what you can do about it. Visit CDC’s DES Update website and complete the quick and easy Interactive DES self-assessment guide to help determine your risk for DES exposure and identify the appropriate steps you should take to minimize your risk. The site also includes helpful information about DES-related health risks and side effects for you, your family and your health care providers.