DES: the wonder drug you should wonder about ....
DES (diethylstilbestrol) is a synthetic female hormone (estrogen) which was used to prevent miscarriages. Between 1941 and 1971, many women were given the drug DES during pregnancy, especially if they had a history of previous miscarriage or slight bleeding, or had diabetes. DES was given in pills, injections, and suppositories. Any mother whose children were born during the thirty years in which this drug was prescribed and who received medication during the first five months of pregnancy may have been given DES. She and her children may be DES exposed.
How does DES affect daughters?
Many daughters born to the women who took DES have changes in their vagina, cervix, and/or uterus due to DES. Most of these changes are not dangerous. The most common change is adenosis -the presence of a type of glandular tissue in the vagina which is not usually found there. Adenosis is often no longer visible in DES daughters over 30 years old. Since adenosis is glandular and produces mucus, some daughters have a discharge which is often mistaken for infection. This discharge does not need treatment and will lessen as the adenosis recedes.
In some daughters, the vagina and cervix also exhibit structural changes such as cervical "collar" or "hood." Sometimes a daughter with a cervical hood may find it difficult to use a diaphragm. Also, a higher rate of menstrual irregularities has been reported.
A small number of DES daughters, all under 32 years old, have developed a rare cancer of the vagina or cervix - clear cell adenocarcinoma. This cancer is very uncommon and will only affect between 1 in 1,000 and 1 in 10,000 DES daughters. If found early, the cancer can be treated.
Do DES daughters have special needs during pregnancy?
Many DES daughters have had normal pregnancies and healthy babies. However, studies show that some DES daughters have difficulty carrying a pregnancy to term. Problems may include a T-shaped uterus, or an incompetent cervix.
If you become pregnant, make sure you receive your medical care from a physician or clinic familiar with the problems that DES daughters may have. Because DES daughters are at a higher risk for tubal (ectopic) pregnancy in the first weeks of pregnancy, you should be examined as soon as you think you are pregnant to determine whether the pregnancy is located in the uterus. Because your risk for miscarriage or premature birth may also be increased, you need to know the signs and symptoms of these problems as well, and you will have to visit your physician at frequent intervals throughout your pregnancy.
Contraception and DES daughters
There is controversy over whether DES daughters should use birth control pills. No studies have been done of the effects of the pill on DES daughters, so we have no proof that use of the pill is safe or unsafe. IUD's (intrauterine devices) carry risk of pelvic inflammatory disease (PID) for every women, not just DES daughters. As a consequence, many daughters prefer barrier methods of contraception, such as diaphragm, foam or condoms. What should I do if I am a DES daughter?
If you believe your mother may have taken DES while pregnant with you, go to a doctor or clinic with experience in DES screening. The time to go is:
* After you have started your first period, or
* If you are 14 years old or over, or
* If you have any unusual vaginal discharge or irregular bleeding.
Because DES-related changes may not show up in the usual pelvic examination or Pap smears performed by most doctors, some special procedures must be used (described later).
If your regular doctor or clinic is not experienced in DES examinations, contact the Obstetrics and Gynecology department of the nearest hospital or DES ACTION/CANADA for a referral.
How does DES affect sons?
DES sons may face an increased risk of epididymal cysts, testicular changes, and fertility problems. Epididymal cysts are the most common abnormality. The epididymis is a collecting structure on the back of each testicle where sperm are stored. Epididymal cysts are benign (non-cancerous), painless growths that feel like small lumps. They may disappear and recur over time.
Testicular problems in some exposed sons include both extremely small testes and undescended testes. Men with undescended testes (even if their mothers did not take DES) have an increased chance of developing testicular cancer.
DES sons, as a group, have more sperm abnormalities than unexposed men. It is possible that these abnormalities may reduce fertility.
What should I do if I am a DES son?
First, if you have any problem or questions, go to a urologist for an examination. Tell the doctor you think your mother took DES during her pregnancy with you. If you do not have a urologist, call your nearest DES ACTION group or university medical centre for a referral.
Second, get in the habit of examining your testicles. Testicular cancer grows slowly and, if found early, can be cured. At present, there is no evidence that DES sons have an increase in cancer, but, just as women should practise breast self-examination each month, men should practise preventive medicine by doing testicular self-examination regularly.
One study has suggested a possible increase in breast cancer in DES mothers. Therefore, DES mothers are encouraged to have regular gynecological and breast exams and should practise breast self-examination every month. Before taking any estrogens such as birth control pills, the morning-after pill, or estrogens for menopausal symptoms. DES mothers should discuss the benefits and risks with their doctor. Research into the relationship between DES and the risk of breast cancer in mothers is continuing.
Many mothers find it difficult to inform a daughter or son of their exposure to DES. They may blame themselves for having endangered their children's health and have problems coping with their guilt feelings. Yet, many mothers have spoken about the relief they felt after informing their children of the problem and discussing with them the health care they would need. Mothers should not blame themselves for taking a drug that they believed would help preserve their pregnancies.
IDENTIFYING DES EXPOSURE
How do I find out if I was exposed to DES?
Many persons do not know that they were exposed to DES. Mothers may not remember taking DES, or recall the kind of medication they were given while pregnant (even some prescription vitamins included DES). For daughters and sons, ask your mother the following questions:
* Did she take any hormones during the first five months of pregnancy?
* Did she have any problems during pregnancy, such as bleeding, miscarriages, premature births, or diabetes?
Find out if she or you can check her medical records (doctor, hospital, pharmacy) to see if she took DES.
For mothers, if you remember taking any medicine, check your medical records.
How do I look for medical records?
THE DOCTOR: Ask the doctor to check your medical records. Doctors' records must be kept for at least five years after your last visit. If the physician has retired or died, very often the practice is taken over by another person. You can contact the hospital and ask them to let you know who has the doctor's records.
THE HOSPITAL: Contact the Medical Records Department of the hospital where the birth took place. Hospitals must keep medical records for 10 years.
THE PHARMACY: if the mother remembers the pharmacy she used, a request can be made for a copy of prescriptions filled for the mother during her pregnancy. Some pharmacies have records going back many years, others do not.
Still, you may draw a blank in your search. If this should happen, and if you have reason to suspect DES exposure, the best thing to do is to have the DES screening exam.
THE DES EXAMINATION FOR DAUGHTERS
The special DES exam consists of:
* A careful visual inspection of the vagina and cervix for physical differences.
* A gentle palpation (feeling) of the walls of the vagina.
* Pap smears from the cervix and from the vagina.
* Iodine staining of the vagina and cervix (normal tissue stains brown; adenosis tissue does not stain).
Depending on the results of these tests, further procedures may be necessary, such as colposcopy and biopsy (described below).
Basically, the examination is quick and simple. As in a regular gynecological examination, the examiner uses a small "duckbill" shaped instrument (speculum) to hold the soft vaginal walls apart so that both vagina and cervix can be seen. A Pap smear will be taken. Using a swab, cells are taken from the cervical opening. A wooden spatula (similar to a thin popsicle stick) is then used to gently scrape the surface of the cervix and the vaginal tissues surrounding it.
The DES exam is different from the regular exam in that a separate Pap smear is taken from the circumference of the vagina.
Another difference in the DES examination is the use of the colposcope. Though experts do not agree that it is always needed, many use it routinely. A colposcope is an optical device that works like a magnifying glass or binoculars. it is placed on a stand between you and the doctor and does not enter your body. Looking through it, the examiner will carefully inspect the walls of the vagina and cervix for cellular changes.
Usually iodine staining is used. With a cotton swab, a diluted iodine solution may be painted on certain areas in the cervix or vagina. It makes the normal tissue dark brown but does not stain the adenosis tissue. You may feel the sensation of the cool liquid.
Colposcopy and iodine staining are not new or special for DES-exposed women. Pap smears will reveal abnormal cells; colposcopy can show abnormal tissue and its exact location. There are times when an examiner cannot determine whether tissue is abnormal even with colposcopy. On these occasions, she/he may take a biopsy from the area in question. This means removing a small piece of tissue for study under a microscope. Biopsies are not uncommon. Many women say the procedure feels like a quick pinch. The largest sample removed is about this size . The entire examination takes more time to read about than to do.
If the above procedures detect DES-related changes, you may be asked to return more than once a year for repeat examinations. Some or all of the procedures done at the first exam may then be repeated.
If your physician does not use the outlined procedures, you may want to seek a second opinion. Make sure you feel comfortable about the health care you are getting and that all your questions are answered.
The oldest DES-exposed daughters were born in 1941. We do not know yet if they will face unusual health problems in their middle and later years. For this reason, physicians advise DES daughters to continue their examinations at least annually for the rest of their lives.
Some brand names under which DES has been sold in Canada:
Nonsteroidal estrogens Benzestrol Novostilbestrol Chembestrol Novostilboestrol Chembstrol Ovextrol Chlorotrianisene Pabalate Dienestrol Phenestrol Dienoestrol Stibilium Diethylstilbestrol Stibrol Estrobene Stilbestrol Gynestrogene Stilboestrol Hexestrol Tace Honvol Tylandril Linguets Vallestril Methallenestrol Willnestrol Vaginal creams and vaginal suppositories Diethylstilbestrol Furacin Furestrol Ortho dienestrol
WHAT IS DES ACTION?
DES ACTION is a national non-profit consumer organization devoted to the concerns of the DES exposed. It provides DES information packets, physician referrals and peer counselling.
For a subscription to the quarterly newsletter, the DES ACTION VOICE, or if you would like to start a DES ACTION group in your community, contact:
Snowdon Post Office Box 233,
Tel: (514) 482-3204.
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|Title Annotation:||synthetic female hormone diethylstilbestrol|
|Publication:||Pamphlet by: DES Action-Canada|
|Date:||Nov 1, 1990|