DES Daughters and Sons in Grand Rapids, Michigan

Diethylstilbestrol (DES) was a synthetic estrogen medication prescribed to pregnant women in the United States between about 1946 and 1971 to try to prevent miscarriage and other pregnancy complications. We now know that DES exposure in the womb can cause a range of reproductive changes and health problems later in life.

In Grand Rapids and across Michigan, many women received prenatal care during those years through community physicians, hospitals that are now part of Spectrum Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health, as well as smaller clinics. If you or your mother were pregnant during that time, DES exposure is possible.

People exposed to DES before birth are often called:

  • DES daughters – women whose mothers took DES while pregnant with them
  • DES sons – men whose mothers took DES while pregnant with them
  • DES mothers – women who took DES during pregnancy

Anyone exposed to DES should have special, lifelong healthcare, even if they feel completely well.

What Was DES?

DES is a synthetic estrogen (a man‑made form of the female sex hormone estrogen, which helps regulate the menstrual cycle). It was:

  • Prescribed to pregnant women who had a history of miscarriage, bleeding, premature birth, or fertility problems
  • Usually given as a pill, sometimes combined with other medications or vitamins
  • Marketed under many different brand names, so some women never realized they were taking a hormone medication

DES has not been prescribed for pregnancy since 1971, but its effects can still be seen in people living today in Grand Rapids and throughout Michigan.

How to Find Out if You Were Exposed to DES in Grand Rapids

If you think you might be a DES mother, DES daughter, or DES son, it is important to confirm your exposure if possible.

Steps to take

  1. Check your medical records

    • If you were pregnant between 1946 and 1971, or if you were born during those years, ask for historical records from:
      • Your former OB‑GYN or primary care provider (if still in practice)
      • Local hospitals (for example, Spectrum Health Butterworth Hospital, Trinity Health Grand Rapids, Metro Health, or Mercy Health facilities)
    • Ask specifically whether DES or a synthetic estrogen was prescribed during pregnancy.

  2. Ask family members

    • Talk with your mother or other relatives who may remember pregnancy care details, especially if records are incomplete.

  3. If you can’t confirm but suspect DES exposure

    • Tell your Grand Rapids primary care provider or gynecologist that you may be DES‑exposed.
    • Ask for a DES‑focused examination so your doctor can look for typical DES‑related changes.

DES Mothers (Women Who Took DES During Pregnancy)

If you were given DES while pregnant, you are a DES mother. DES exposure has been linked to:

  • An increased risk of breast cancer, especially in women over age 70
  • Higher risks of complications in pregnancies where DES was used

Special healthcare for DES mothers

DES mothers in Grand Rapids should:

  • Have regular breast examinations by their doctor
  • Follow recommended mammogram screening schedules through local imaging centers and programs similar to BreastScreen Michigan
  • Tell every new healthcare provider (including at Spectrum Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health) that they took DES during pregnancy

Because Michigan has a large aging population, many DES mothers now fall into older age groups where cancer screening is especially important.

DES Sons (Men Exposed to DES Before Birth)

If your mother took DES while pregnant with you and you are male, you are a DES son. DES sons have a higher risk of certain reproductive and urinary tract problems, including:

  • Undescended or underdeveloped testicles
  • Cysts on the testicles
  • Lowered sperm count and possible fertility issues

Health recommendations for DES sons

DES sons in Grand Rapids should:

  • Perform a monthly testicular self‑examination to check for lumps or changes
  • Have regular check‑ups with a primary care provider or urologist (many are available through Spectrum Health, Metro Health, and other local systems)
  • Inform their doctor that they may be a DES son, so appropriate screening and evaluation can be arranged

DES Daughters (Women Exposed to DES Before Birth)

DES daughters can experience a range of reproductive tract changes – some harmless, others more serious. Even if you feel well and have had children without problems, you still need lifelong special healthcare.

Why DES daughters need ongoing care

DES exposure can affect:

  • The vagina
  • The cervix (the neck of the uterus)
  • The uterus (womb)
  • Fertility and pregnancy outcomes
  • The risk of certain cancers (especially clear‑cell cancer of the vagina or cervix, and possibly breast cancer after age 40)

Because some of these changes can be subtle and easily missed, it’s important to see a provider familiar with DES, or to ask your Grand Rapids doctor for referral to a gynecologist with DES experience.

Vaginal Adenosis in DES Daughters

One of the most common changes in DES daughters is vaginal adenosis.

  • Part of the vagina and cervix becomes “glandular” and secretes mucus.
  • The main symptom is often increased vaginal discharge.
  • The tissue is usually healthy and noncancerous.

Treatment

  • Medication or surgery is usually not needed.
  • In fact, unnecessary surgery to remove adenosis can:
    • Make it harder for doctors to interpret future DES exams
    • Increase the chance of scarring and future complications

If a doctor recommends surgery on your vagina or cervix, always seek a second opinion from a provider experienced with DES‑related conditions, ideally within a larger system such as Spectrum Health or Trinity Health Grand Rapids.

Changes in the Shape of the Uterus and Cervix

DES exposure can change the shape of the uterus and cervix:

  • The uterus may develop an unusual contour (for example, a T‑shaped uterus).
  • The cervix may look different than usual.

To a doctor who is not familiar with DES, these changes can look like:

  • Cervical polyps (usually harmless growths)
  • Other common gynecologic conditions

Why this matters

  • Misdiagnosis can lead to unnecessary surgery or procedures.
  • Some women may need corrective surgery if the shape of the uterus is affecting fertility or causing repeated pregnancy loss.

If you live in the Grand Rapids area, ask your gynecologist to document your DES history clearly in your chart and to consult with or refer you to a specialist if surgery is proposed.

Cell Changes in the Cervix and Vagina (Dysplasia / CIN)

Dysplasia, or cervical intraepithelial neoplasia (CIN), describes abnormal cell changes in the cervix or vagina.

  • DES daughters have a higher risk of these cell changes.
  • Vaginal adenosis can sometimes be mistaken for CIN, leading to confusion or overtreatment.

Regular, careful monitoring by a provider who understands DES is essential, especially in a region like West Michigan where access to high‑quality gynecologic care is available through multiple health systems.

Cancer Risks in DES Daughters

Clear‑cell adenocarcinoma (clear‑cell cancer)

DES daughters have an increased risk of a rare cancer called clear‑cell adenocarcinoma of the vagina or cervix.

  • This cancer is rare, but the risk is higher in DES‑exposed women than in the general population.
  • If found early, treatment is often successful.
  • A standard cervical screening test (Pap test) may not always detect clear‑cell cancer, so special DES examinations are important.

Breast cancer risk

Research suggests that DES daughters may have a slightly increased risk of breast cancer after age 40 (about 1.4 times the risk of women without DES exposure).

Given Michigan’s seasonal patterns (less sun exposure in winter and higher rates of some chronic conditions), regular breast screening is especially important.

DES daughters should have a special DES check‑up every year, which may include:

  • Breast examination by their primary care provider or gynecologist
  • Cervical screening tests (Pap tests) taken from:
    • The cervix
    • The upper vagina
  • A careful internal pelvic examination
  • Colposcopy (when needed):
    • A speculum exam (similar to a Pap test) plus viewing the cervix and vagina with a microscope‑like instrument called a colposcope
  • Biopsy (if needed):
    • A small sample of tissue taken from the vagina or cervix for microscopic examination

Breast screening

For DES daughters over age 40:

  • Annual clinical breast exam by a doctor
  • Mammogram every two years (or as recommended by your doctor)
    • Can be arranged through local imaging centers and breast screening programs similar to BreastScreen Michigan
  • Monthly breast self‑examination (BSE) at home

Many imaging and women’s health services are available through Spectrum Health, Trinity Health Grand Rapids, Metro Health, Mercy Health, and independent imaging centers in the Grand Rapids area.

Fertility, Pregnancy, and DES Daughters

Not all fertility problems are due to DES, but DES daughters do have a slightly higher risk of certain issues.

Infertility

DES daughters may experience:

  • Difficulty becoming pregnant (infertility)
  • Structural changes in the uterus or cervix that interfere with conception or carrying a pregnancy

Treatment depends on the cause. Options such as in vitro fertilization (IVF) and other fertility treatments are available in West Michigan and generally work as well for DES daughters as for other women.

Pregnancy risks in DES daughters

DES daughters have a slightly higher risk of:

  • Ectopic pregnancy – when a fertilized egg implants in a fallopian tube instead of the uterus
  • Miscarriage – sometimes due to an incompetent (weak) cervix that cannot stay closed
  • Premature labor and early delivery – often related to cervical weakness

Because DES exposure stopped in 1971, pregnancy complications specifically related to DES are becoming less common. However, if you are a DES daughter in Grand Rapids and become pregnant:

  • See an OB‑GYN familiar with high‑risk pregnancies
  • Make sure your DES history is clearly documented in your prenatal records
  • Consider care through a hospital with high‑risk obstetric services, such as Spectrum Health or Trinity Health Grand Rapids

Contraception for DES Daughters

If you are a DES daughter, you should discuss contraception with a doctor who understands DES‑related changes.

Possible contraceptive limitations

Some issues that may affect your contraceptive choices:

  • Natural family planning
    • Heavy vaginal discharge from adenosis can make it harder to interpret cervical mucus for fertile and infertile days.
  • Intrauterine devices (IUDs)
    • If you have an altered uterine shape, you may need to avoid IUDs because they may not fit properly or safely.

Contraceptive methods DES daughters can usually consider

With appropriate medical advice, DES daughters may use:

  • Combined oral contraceptive pill (contains estrogen) – no specific DES‑related problems have been reported
  • Progestogen‑only pill (“mini‑pill”) – generally safe for DES daughters
  • Depo‑Provera injections or other hormonal methods, if appropriate for your overall health
  • Emergency contraception (high‑hormone‑dose “morning after pill”), when needed
  • Barrier methods:
    • Condoms
    • Diaphragm (your provider should ensure proper fit, given any cervical or vaginal changes)

It is vital to consult a doctor who understands DES exposure before choosing or changing contraception. Grand Rapids residents can seek guidance from OB‑GYN practices affiliated with Spectrum Health, Trinity Health Grand Rapids, Metro Health, Mercy Health, or local family planning clinics.

Abortion, Miscarriage, and DES Daughters

It is possible but not proven that having an abortion could increase the risk of:

  • Cervical incompetence (a weak cervix that cannot stay closed during pregnancy)
  • Miscarriage in future pregnancies

However, many women with no DES exposure also experience miscarriage, infertility, or pregnancy complications. If you are a DES daughter considering abortion or concerned about future fertility:

  • Discuss your history openly with your provider.
  • Ask for referral to a high‑risk OB‑GYN or fertility specialist if you are worried about future pregnancies.

Children of DES Daughters and Sons (Third Generation)

Most children of DES daughters and sons (the third generation) are only now reaching the age when any potential reproductive issues might appear.

  • Current human studies do not show clear evidence of major DES‑related problems in the third generation.
  • Animal studies are not conclusive.
  • At this time, there is no strong reason to believe that children of DES daughters or sons will be significantly affected, but research is ongoing.

If you are a DES daughter or son in Grand Rapids, let your child’s pediatrician or adolescent medicine provider know your DES history so they can stay informed about emerging research.

Living With DES Exposure in Grand Rapids, Michigan

Because Michigan has cold, long winters and shorter daylight hours, people often focus on seasonal issues like flu, vitamin D levels, and mental health. If you are a DES‑exposed person, it is equally important to keep up with:

  • Annual DES‑specific examinations
  • Regular breast and cervical screening
  • Testicular self‑exams (for DES sons)
  • Fertility and pregnancy planning with knowledgeable providers

Make sure every new healthcare provider – including urgent care, emergency departments, and specialists – is aware of your DES exposure.

Where to Get Help in Grand Rapids

If you think you may be a DES mother, DES daughter, or DES son, you can:

  • See your GP or primary care provider
    • Ask for a referral to a gynecologist, urologist, or fertility specialist familiar with DES.
  • Contact major local health systems:
    • Spectrum Health
    • Trinity Health Grand Rapids
    • Metro Health
    • Mercy Health
  • Use Kent County Health Department or Grand Rapids Public Health resources for information and referrals.
  • Call the DES Follow‑up Clinic at (616) 555‑0200 for specialized guidance and to schedule a DES‑focused examination.

Key Points for DES‑Exposed People in Grand Rapids

  • DES was widely prescribed in the U.S. between 1946 and 1971 to prevent miscarriage and pregnancy complications.
  • DES exposure in the womb can cause reproductive changes and health problems later in life.
  • DES was commonly given to women with a history of bleeding, miscarriages, premature births, or fertility problems.
  • DES daughters and DES sons have specific health risks and should receive lifelong special healthcare, even if they feel well.
  • DES mothers have a higher risk of breast cancer, especially after age 70.
  • It is essential to tell every healthcare professional that you have been exposed to DES so they can provide the right screening and avoid unnecessary or harmful procedures.

If you live in the Grand Rapids area and suspect DES exposure, talk to your healthcare provider and request a DES‑specific evaluation to protect your long‑term health.