Cancer Causing Drug

The 4th July holiday is over and I myself took off a couple of days from thinking about mesh and all the horrors. I was home the entire time enjoying making miniatures and playing with our five rescue dogs because I needed to clear my mind to begin again this week.

If it were not for other women I could never write so many blogs. This is because the human link would be removed and I would never be told the things I know. Some of the things I learn are good things to help other women whereas not everything is good news. You would think by now I would have learned all there was to know about mesh and our injuries, but I also learn about women who are damaged by the robot and help them find a way to have support with others who understand.

Women’s issues are honestly terrible regardless of how they are injured. In the past I have written that because we are adult women no one seems to care about what is happening to our bodies including most women who are in a position to help make a change. I have always felt that only photos of babies and puppies seem to tug at people’s hearts and hit the news. However those babies grow up and become men and women. What has happened to women while they are pregnant seems to be shoved under the carpet just like injuries done to us in the past few years. This is not right because as generations forget, women suffer unbelievable damage that goes unreported or under reported.

A few days ago I had a phone call from a mesh injured woman I have known a long time. She is now in Dr. Raz hands and he is doing all he can to try to give her a better life. She too has gone through hell because the original doctor messed her up so much and so did the removal doctor. She had to wait until she finally fought her way through to get full disability and was able to go out to UCLA on her Medicare insurance. It is a long wait and a very painful struggle for so many women because mesh injuries are still not viewed as something that disables. But so many women wind up disabled because of implants and bad surgeries. Ladies, never give up fighting for full disability. This is your life and you deserve a good choice of a doctor who will do their best to help you.

When we spoke, we first caught up on her surgeries and how she is doing now and what the future holds for her and then began chatting as friends. She told me something that I can’t believe that at my age, sixty-eight, I have never heard about. She gave me key words to look it up and without them I would never have found out how bad this is. In fact upon reading it I was shocked and angry that this had been pushed aside and so many women may be affected by it. That is why I took a few days off because at that point I needed to get over the anger to learn more and to inform women.

I am sure every woman knows about what happened to babies born to women who took the drug Thalidomide. If you are young and you don’t know then it is time to get educated. However this blog is not about that particular drug. There is a documentary that my daughter and I watched together about thalidomide and at that time it was on Netflix. These babies are now older adults and have had to deal with the after effects of a terrible drug given to women. Do yourself a favor and start getting educated because if you think this cannot happen in your lifetime of giving birth, think again. I will give you a link at the end of this blog if you are interested.

Now you are going to learn about another terrible drug that women took because all they wanted was to have a baby of their own. They did not commit a crime and they did not know that a crime was going to be committed against the baby they carried. Like all of us who are mesh injured they believed in their doctor and could not imagine they would be putting their daughters through a life time of hell. Sometimes their daughter’s life would be cut short because of a drug that their mother unknowingly took to give birth to them and it would be the cause of so much devastation and illness.

Before I continue, please if you read this and suspect that you could be one of the daughters of this drug, please take care how you approach speaking with your mother. She may have worried about it for years and feels guilty or worse yet she never knew what this drug could do. So talk to your mother if she is still alive both with love and respect. It was not her fault.

You may now wonder what this drug is. It is called Diethylstilbestrol or DES for short. If you look this up you will find huge amount of information other than the information I am giving you here, but to find it you have to put these key words in Google. ‘Des daughters’. Boys were also at high risk for cancer and the information here will help you if you think your brother was exposed.

This blog will be very long due to the fact that when I give links on my blog sometimes within a short period of time, those links no longer work. I don’t think this one will leave but I am not willing to take any chances because it is so important. I will give you the link at the bottom of the blog but this is why this is so important to put it all here for you to read.

Before I give you that information you may be reading this while living in other countries or your mother lived in another country while pregnant with you. This is what I found when I Googled.
The U.S. Food and Drug Administration recommended its removal in 1971 after studies linked it with a rare form of cancer. Most doctors in this country stopped prescribing the drug at that point, but in parts of Europe DES was still prescribed until the late 1970s and even the early 1980s.

If I have learned anything in the past five years it is this. Side effects are rarely rare, they are simply under reported.

I was so horrified to learn about this drug because this drug could have been the cause for so many women’s cancers and/or hysterectomies and this is why I researched and I am trying to help women get educated now.

DES Exposure: Questions and Answers

What is DES?

DES (diethylstilbestrol) is a man-made (synthetic) form of estrogen, a female hormone. Doctors prescribed it from 1938 until 1971 to help some pregnant women who had had miscarriages or premature deliveries. At that time it was believed that these problems might have been caused by low levels of estrogen in the woman’s body. DES was used to correct this problem. It was given to millions of women in the United States during this time.

DES was used less in the 1960s, after studies showed that it might not help women carry pregnancies to full term. Later, it was learned that infants whose mothers took DES during the first 5 months of pregnancy were more likely to have problems in their reproductive systems.

In 1971, the US Food and Drug Administration (FDA) advised doctors to stop prescribing it during pregnancy. A campaign was also started to tell the public about the problems DES could cause, and doctors were urged to tell patients who may have taken the drug. But there was no good way to tell every person who was exposed to DES. Many people who were exposed to DES as a fetus still don’t know it.

Estrogens are still prescribed for some medical reasons, including to help treat some cancers, but they are no longer used during pregnancy. Other than in a rare clinical trial, DES is no longer available in the United States for use in humans.

Who was exposed to DES?

About 5 to 10 million people are thought have been exposed to DES during pregnancy:

  • DES mothers: Women who took DES while pregnant
  • DES daughters: Women whose mothers took DES while pregnant with them. This exposed them to DES while they were growing in the womb
  • DES sons: Men whose mothers took DES while pregnant with them. This exposed them to DES while they were growing in the womb

Only those children who were in the womb at the time their mothers took DES were exposed to it. Brothers or sisters from pregnancies during which DES was not taken were not exposed.

How do you know if you (or your mother) took DES during pregnancy?

Many people don’t know if they were exposed to DES.

Many women do not know if they got DES while they were pregnant. Any woman who was pregnant between 1938 and 1971 and had problems during the current or a previous pregnancy may have been given DES or another estrogen-like drug. Women who did not have problems are less likely to have been given DES. Women who were not under a doctor’s care while pregnant most likely did not take DES either, because you could only get it with a doctor’s prescription. DES was given in pills, injections, and vaginal suppositories (sometimes called pessaries).

Checking medical records

If you think you (or your mother) took a hormone like DES during pregnancy, you should try to contact the doctor who managed the pregnancy or the hospital where you were born to ask if there is any record that you (or your mother) were given DES. Mothers and children have a right to see any of their remaining medical records.

Unfortunately, finding medical records after such a long period of time may not be possible in many cases. Most hospitals and doctors’ offices do not keep medical charts or records beyond a few years. If the doctor has moved, retired, or died, another doctor might have taken over the practice as well as the records. The county medical society or health department may be able to tell you where the records are, if they still exist. A few pharmacies keep prescription records for a long time, but many chain drugstores only keep them up to10 years. If you know where the prescription was filled, you might want to ask there.

If you are able to get records, it may help to know that DES was sold under many different names. The Centers for Disease Control and Prevention (CDC) has a list of DES brand names on their website (www.cdc.gov/des/hcp/brand/index.html). Two of the most commonly used names were stilbestrol and DESPlex, but there are dozens more.

It’s important to keep any records you have about DES exposure. Write down and save anything you find out about dates the drug was taken, and other details.

If you can’t find out for sure

In many cases, it may not be possible to find out if DES was used. And there are no medical tests that can tell you if you were exposed to DES.

If you can’t find this information and are unsure of your (or your mother’s) exposure, the CDC’s DES Self-Assessment Guide can help you figure out how likely it is. It can be found online at www.cdc.gov/des/consumers/guide/index.html. Or you can get a print version by calling the CDC’s toll-free number found in the “Additional resources” section at the end of this document.

What health problems might women who took DES during pregnancy have?

Breast cancer

Women who took DES appear to have an increased risk of breast cancer. Most research suggests that the risk of breast cancer in DES-exposed mothers is about 30% higher than the risk of women who have not been exposed to this drug. When looking at breast cancer risk during a woman’s lifetime, this means about 1 out of 6 women who took DES during pregnancy will get breast cancer, as opposed to about 1 out of 8 women who were not exposed to DES. Of course, many other factors affect breast cancer risk as well.

There are no other known health effects of DES exposure in pregnant women who took this drug.

What should women who took DES while they were pregnant do?

A woman who took DES while pregnant (or suspects she may have been given it) should tell her doctor. If possible, she should try to find out the dose, when the medicine was started, and how it was used.

She also should tell her children who were exposed in the womb. They need to tell their doctors, so that this information can be included in their medical records.

DES-exposed mothers should follow a regular schedule for early breast cancer detection, as is recommended for all women. This should include regular mammograms and clinical breast exams. (For American Cancer Society recommendations on breast cancer screening, see our document Breast Cancer: Early Detection.) Women should report any new breast lumps or other breast changes to a doctor right away. They should also have regular medical check-ups.

What health problems could DES-exposed daughters have?

Clear cell adenocarcinoma

DES is linked to a rare cancer called clear cell adenocarcinoma (CCA) in a very small number of daughters of women who used DES during pregnancy. This cancer of the vagina and cervix usually occurs in DES-exposed daughters in their late teens or early 20s. But it has been reported as early as age 8, and the upper age limit, if any, is not known. DES-exposed daughters are now older than 40, but their risk may still be higher than in women who were not exposed.

DES-exposed daughters are about 40 times more likely to develop CCA than women not exposed to DES in the womb. But because this cancer is so rare, this means that about 1 of every 1,000 DES-exposed daughters might develop CCA.

Treatment for CCA depends on the location and stage (extent) of the cancer. For more information on the treatment of clear cell adenocarcinoma, please see our documents Vaginal Cancer or Cervical Cancer.

Abnormal cells in the cervix and vagina

DES exposure before birth has been linked to a higher risk of having abnormal cells in the cervix and vagina. Daughters who know they were exposed to DES typically have more frequent exams to look for these types of changes, but it’s not clear exactly how much the risk is increased.

Doctors use a number of terms to describe these abnormal cells, including atypical glandular cells, dysplasia, cervical intraepithelial neoplasia (CIN), and squamous intraepithelial lesions (SILs). These abnormal cells look like cancer cells. But they do not spread into nearby healthy tissues like cancer cells do and so are often called pre-cancers. This condition is not cancer, but it might develop into cancer if it’s not treated.

Structural changes in the female reproductive tract

DES-exposed daughters may have a vagina, uterus, or cervix with an unusual shape or form (structure). Most of these changes do not threaten the woman’s life or health. But some can cause problems for women who want to get pregnant or cause other reproductive health problems.

Problems getting pregnant

DES-exposed daughters are more likely to have fertility problems than women who weren’t exposed to DES. Still, most don’t have problems becoming pregnant. The largest study of fertility found that 28% of women who had been exposed to DES didn’t get pregnant after trying for at least 12 months, compared with 16% in women who were not exposed to DES.

At least part of this difference seems to be caused by changes in the shape of the uterus. DES-exposed daughters may also be more likely to have irregular menstrual periods, which could add to fertility problems.

Problems during pregnancy

DES-exposed daughters may also have a higher risk of certain problems during pregnancy. These include:

Premature birth

Among DES-exposed daughters, about 64% have delivered a full-term baby in their first pregnancy, compared with 85% in women who were not exposed to DES.

Tubal (ectopic) pregnancy

The risk of an ectopic pregnancy (where the egg implants in an area other than the uterus and poses a danger to the mother) is about 3 to 5 times higher in DES-exposed daughters.

Miscarriage

Almost 20% of DES-exposed daughters miscarry their first pregnancy, compared with about 10% among women not exposed to DES.

Preeclampsia

DES-exposed daughters have a slightly higher risk of preeclampsia during pregnancy. Preeclampsia (sometimes called toxic pregnancy or toxemia) is a condition in which high blood pressure and protein in the urine develop in the late 2nd or 3rd trimester of pregnancy. It can be dangerous and may require delivering the baby early.

Breast cancer

According to the largest study to date, DES-exposed daughters have a slightly increased risk for breast cancer. This increased risk was not seen in some other studies. So far, the total overall increase in risk appears to be only about 2% (in this study, the group of women without DES exposure had about a 2% risk of breast cancer, while the group of women with DES exposure had about a 4% risk). But it’s important to note that the women in this study (and many DES-exposed daughters in general) are still younger than the average age at which breast cancer usually occurs. The increased risk of breast cancer may become larger as these women get older. This issue is still being studied.

The risk of other cancers does not seem to be increased, but research continues in this area as well.

Other possible health problems

A recent study suggested that DES-exposed daughters might have a higher risk of depression than women who had not been exposed to the drug, although other studies have not found this.

Some studies have found that DES daughters are likely to be younger at menopause.

What should DES-exposed daughters do?

If you were born between 1938 and 1971, and you think that your mother may have been given DES, try to learn how long and at what point in her pregnancy she took the drug. Or you can try to find records from her obstetrician’s office. (See the section, “How do you know if you [or your mother] took DES during pregnancy?”)

Women who believe they may have been exposed to DES before birth should be aware of the possible health effects of DES and tell their doctors about their exposure. Some problems, such as clear cell adenocarcinoma, are usually found only when the doctor is looking for them. This is why it’s important that your doctor know about the possible problems linked to DES exposure and to keep records of your exposure, if you have them.

Getting recommended screening exams and tests

DES-exposed daughters should get regular gynecologic exams throughout their lifetimes. Discuss with your doctor which tests are appropriate for you and when you should have them.

Many doctors recommend these women have regular, thorough exams every year. These exams may include the following:

Pelvic exam

This is a physical exam of the reproductive organs. As part of a pelvic exam, the doctor feels the vagina, uterus, cervix, and ovaries for any lumps. This is also known as a bimanual exam. An exam of the rectal area may be included as well. Sometimes, feeling for lumps is the only way to find an abnormal growth.

Pap test

A routine Pap test is not enough for DES-exposed daughters. The cervical Pap test must be done along with a special Pap test of the vagina called a four-quadrant
Pap test, in which cell samples are taken from all sides of the vagina.

Iodine staining of the cervix and vagina

An iodine solution is used to briefly stain the linings of the cervix and vagina. This helps the doctor find adenosis (an abnormal growth of glandular tissue that is not cancer) or other abnormal tissue.

Colposcopy

For this exam, the doctor uses a magnifier to look closely for abnormal tissue in the vagina and cervix. Some doctors do not do this for everyone, but this is commonly done if the Pap test result is not normal.

Biopsy

Small samples of any parts of the cervix or vagina that look abnormal on other tests are removed and looked at under a microscope to see if cancer cells are present.

Breast exams and screening tests

DES-exposed daughters should follow current breast cancer screening recommendations, including getting regular mammograms and clinical breast exams. (For American Cancer Society recommendations on breast cancer screening, see our document Breast Cancer: Early Detection.) Women should report any new breast lumps or other breast changes to a doctor right away.

Reducing risks during pregnancy

Because of the problems that may show up during pregnancy, DES-exposed daughters need to tell their doctors about their DES exposure. It’s best if they do this before they become pregnant. This way they can work with their doctors to watch for signs of problems and deal with them as soon as possible. Their pregnancies will probably be treated as high-risk, meaning these women will be closely watched by their doctors throughout the pregnancy.

Again, it’s important to note that most DES-exposed daughters do not have problems getting pregnant or carrying a baby to full term. All women should have good prenatal care, but it’s even more important for DES-exposed daughters.

Is it safe to use oral contraceptives (birth control pills) or hormone replacement therapy?

Each woman should talk about this with her doctor. Studies have not shown that birth control pills or hormone replacement therapy is unsafe for DES-exposed daughters, but some doctors believe DES-exposed daughters should avoid them because of the estrogen in them. Structural changes in the vagina or cervix do not usually cause problems with the use of other forms of contraception, such as diaphragms, female condoms, or spermicides.

What health problems could DES-exposed sons have?

Epididymal cysts

DES-exposed sons have an increased risk for epididymal cysts, which are non-cancerous growths on the testicles. Some studies have found that as many as 1 out of 5 DES-exposed sons may develop these.

Other health problems

Whether DES-exposed sons are at higher risk for other genital changes is not known. Some studies have found that DES-exposed sons might have a higher risk of undescended testicles or hypospadias (a birth defect in which the urethra opens along the bottom of the penis rather than at its tip). But other studies have not found these risks.

The possible relationship of DES exposure to increased risk of testicular or prostate cancer is not clear at this time. Some studies have suggested a possible link, but others have not.

DES-exposed sons don’t seem to have more fertility problems than other men.

What should DES-exposed sons do?

There are no special screenings or tests recommended for DES-exposed sons, but they should tell their doctors about their exposure and get regular exams from their doctors.

Even though DES-exposed sons have not been found to have a higher risk of developing cancer, males with undescended testicles or unusually small testicles have a higher risk of testicular cancer, whether they were exposed to DES or not. DES-exposed sons may want to talk to their doctors about whether they should examine their testicles regularly.

What about children of DES-exposed sons and daughters (DES third generation children)?

It is not yet clear if children born to DES-exposed daughters and sons have any greater health risks than other children. These children were not directly exposed to DES, so they would not be expected to have the same risks as their parents, but research in this area continues.

Some studies have suggested that the risk of hypospadias may be higher in boys whose mothers were exposed to DES. Most other studies so far have not found higher risks of birth defects or cancer in these children, but some health problems might not show up until they’re older. Researchers are following these children to look for possible health effects.

DES research

Several groups of researchers around the world continue to follow people who may have been exposed to DES (and their children) to look for possible health effects.

Some people known to have been exposed to DES are being watched in the National Cancer Institute’s DES Combined Cohort Follow-up Study, which was started in 1992. Researchers are following up with more than 20,000 people to look for possible effects of DES, such as higher risks of breast and testicular cancers, as well as other health issues that might not be as easily linked to DES exposure. This research is still going on, and study results continue to be published.

The Follow-up Study also includes the children of the daughters and sons who were exposed to DES — the third generation of DES-exposed families. The third generation will continue to be studied, along with the mothers who were first exposed to DES and their children.

This will tell you about the women’s lawsuit

This is a review from the book Des Daughter’s

http://www.cdc.gov/DES/CONSUMERS/daughters/index.html about DES

Here is a link to buy the book

Now learn about Thalidomide

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