DES ectopic pregnancy

DES Tears Flow Across Each Generation

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DES tears

DES Info: “The fear is still there and the tears are still flowing” #TheDESTragedy

It’s interesting watching our roles within the family change over time. I saw my mother cry during those long and difficult years when my compromised reproductive system worked so badly. Now, I find myself on an emotional tightrope worrying about the future effects of DES exposure on myself, my son and my granddaughters who are also members of the DES community.

Worrying seems to go with being a DES Daughter. My first real jolt came when excitement at my first pregnancy which turned to sadness upon learning it was an ectopic pregnancy. In the early 1970’s, we didn’t know of the increased ectopic pregnancy risk for DES Daughters, but I always wondered. Years were spent trying to get pregnant again and I underwent additional surgeries trying to help my fertility and chances of becoming pregnant.

The doctors felt that I would never be able to get pregnant. It was not easy but I was granted a “miracle baby” and my son was born after a difficult pregnancy.

We had wanted more children, so we tried again, only to experience the heartache of a second ectopic pregnancy. I hadn’t felt well but doctors couldn’t find a problem so they sent me home. There were no ultrasounds then so we didn’t know how serious things were until the Fallopian tube ruptured and I almost died. I remember waking up on a ventilator, knowing what had happened and crying along with my husband, mother and father.

You can only imagine how my Mom felt then. She was angry and mad at the DES she’d been prescribed. Mom and I both cried long and hard during my recovery as we realized the loss of both ovaries and Fallopian tubes meant I’d reached the end of my fertility at the age of 26. It had been my dream to have another child and it was gone. I think the hardest to overcome was the loss of not being able to have another child and to see my Mom’s grief along with my own.

DES daughter

But I was alive – with a son to raise. Through the years my son has remained healthy, however, I still worry. He is a DES Grandson and we don’t know whether there are problems yet to come. I have to worry for my son because he doesn’t do it himself. He’s a typical guy and tells me not to be concerned. I urge him to pay attention to his body and get the health screenings he needs as a man. I think most mothers worry about their sons, but being a DES Daughter, with a DES Grandson, exacerbates the situation. His life has also been affected by his and his wife’s own pregnancy losses. Any connection to DES? One wonders and my fears are still there.

And then there’s great joy in my life. My son and his wife welcomed two daughters into their family. I melt when they run into my arms and seem so perfect. But in my quiet moments I have been known to cry when I think that they are DES Great Granddaughters and might have also been affected by this drug. It’s just too early to know for sure, so my fears are there.

DES across generations

 

How do I handle this? By staying informed about DES and being an advocate for the DES exposed. We must be educated, aggressive and assertive when dealing with our health care. Don’t be shy, read all you can. If you read the Facebook page DES Info, you will know more than your doctor.

Case in point – after my hysterectomy, I did not feel that I needed any further Pap tests. But I learned from activist Pat Cody, that what holds true for unexposed women does not necessarily apply to DES Daughters. So I do take care of myself and have yearly Pap/pelvic exams and mammograms. All DES Daughters should, whether or not they’ve had a hysterectomy. Of course, I worry about cancer – now even breast cancer – so the fear is still there and the tears are still flowing.

But I am also taking action. I pay attention to DES for myself, my son and my granddaughters. We need more research and information for DES sons and grandsons along with the third generation.

The word needs to get out that DES exposure did affect the fetus’s skeletal structure. Research has proven this. I know it has affected mine because I am dealing with osteoporosis and brittle bones.

In quiet moments I’m sure we’ve all been overwhelmed with emotions. But nothing feels better than rising up and doing something positive. You can get involved by advocating for the DES exposure and to push government agencies to do more.

The DES Tragedy still continues. We now know that it is in the animal industry in Kenya and women are taking DES intended for the cattle. We have also heard that this drug is also being used in China and India.

As a DES daughter, like many of the exposed around the world, we are still awaiting an apology for this tragedy.

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Image credit: 9Cover.com free Facebook cover photos.

This article was originally published on September 5, 2017. 

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What is DES and Why You Should Care

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Diethylstilbestrol or DES is synthetic estrogen developed in the late 1930s. It was initially approved by the FDA in 1941 for vaginitis and as an early hormone replacement therapy for menopausal women.  It was later approved a variety of low estrogen indications. In 1947, the FDA approved its use in pregnant women with a history of miscarriage. DES had been used off-label for miscarriage prevention since the early 1940s, despite the fact that little evidence supported its use and animal studies indicated clear carcinogenic and congenital reproductive abnormalities in the offspring.

After 10 years of widespread use and marketing, a double-blind, placebo-controlled study on the efficacy of DES was finally conducted. As one might expect, it was found ineffective in preventing miscarriage. In fact, women on DES had a higher risk of miscarriage. Later studies in the 1960s began detailing the adverse events associated with this drug. Despite mounting evidence of the dangers of diethylstilbestrol, it remained on the market and widely used through the early 1970s in the US and into the 1980s in some European countries.  In the US alone, it is estimated that between 5-10 million women and their children were exposed to DES.  Because the compound was never patented, 287 drug companies sold DES under a multitude of brands  and for an array of low-estrogen conditions.

In addition to diethylstilbestrol use in humans, it was used widely in farm animals to fatten up the chickens and cattle, beginning in the early 1950s and through the 1970s. DES was found to cause cancer and interestingly enough, cause gynecomastia (man boobs) and sterility in the poultry workers. Well before DES was banned in humans, the FDA banned it in poultry under the newly enacted Delaney Clause to the FDA 1958.  It seems man boobs and sterility was all it took to ban the product in chicken farms.  Miscarriage, congenital abnormalities and cross-generation cancer risks, on the other hand, were not sufficient to initiate its ban in large cattle or humans. It was another 20 years before diethylstilbestrol was banned in cattle or humans and many years after before it was removed from the food chain (if it even is now).  “In 1980, half a million cattle from one hundred and fifty-six feedlots in eighteen states were found with illegal DES implants.”  Even upon FDA’s decision to withdraw its approval of DES in cattle and feed, it did so on grounds of the procedural non-compliance of the manufacturers, erstwhile maintaining the safety of diethylstilbestrol, “because there is no evidence of a public health hazard.”  Despite its clear carcinogenic and teratogenic risks, it is still used in veterinary care.

Diethylstilbestrol Risk for Humans

Amongst those suffering the most from DES exposure are men and women who were exposed in utero as developing fetuses.  DES was given to pregnant women from the 1940 through 1971 in the US and into the 1980s in some European countries. If you were born anytime between 1940 and 1980, ask your mom if she was given DES to prevent miscarriage. It was sold under dozens of brand names (click here for brand names).

Sons and Daughters of DES

The range of depth of reproductive abnormalities, endocrine and health issues found in the children and grandchildren of DES moms, is expanding regularly. If your mom or grandmother was given DES, here is a list of health issues to look for:

DES Daughters

In a large cohort study comparing the reproductive health of the daughters of women prescribed DES during pregnancy to the health of women whose mothers had not been given DES, researchers found a 2-8 times higher incidence of the following conditions:

  • Infertility
  • Spontaneous abortion
  • Ectopic pregnancy
  • Second trimester pregnancy loss,
  • Preterm delivery
  • Preeclampsia
  • Stillbirth
  • Neonatal death
  • Early menopause
  • Breast cancer
  • Cervical neoplasia
  • Clear cell adenocarcinoma

The increased risk of miscarriage and adverse pregnancy outcome in DES daughters is overwhelmingly linked to structural abnormalities with uterus. Fully 69% of DES daughters who have had difficult with infertility and miscarriage have an abnormally shaped uterine cavity or structural changes to the cervix (44%).

DES and Endometriosis

Of particular interest to Hormones Matter followers, DES exposure in utero is linked to an 80% increase in endometriosis. We will be digging deeper into the DES – endometriosis connection in the coming weeks.

DES Sons

Sons of women given DES during pregnancy are three times more likely to have structural abnormalities of the genitals including:

  • epididymal cysts
  • undescended testes
  • extremely small testes
  • hypospadias (misplaced urethral opening)
  • micropenis (some, but not all)
  • increased risk of infertility
  • increased risk of testicular and prostate cancer (although the research has just begun)

In the animal research, offspring of DES exposed mothers shows a vast array of structural and morphological changes across multiple physiological systems ranging from sex reversal in male fish to structural and functional changes in pancreatic cells. The full scope of damage from DES is yet to be determined.

DES Grandchildren

Yes, there are third generation effects from this drug. Researchers are just beginning to untangle the third generation effects. In women, menstrual irregularities appear more common as do the various forms of cancer, but the data are unclear. In men, hypospodias may be more frequent, but again the data are mixed.

Endocrine disruptors like diethylstilbestrol impact human health in ways we are only just beginning to understand. The current methods for measuring and calculating risk for endocrine disruptors is out-dated and based on standard, linear, dose-response curves that not only fail to account for how hormone systems work, but also fail to address possible transgenerational effects. Hormones matter and sooner or later we must address the broader endocrine system in pharmaceutical and environmental regulation. As women, we ought to be fighting for sooner.

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