DES Sons Numbers and Health Concerns

How many DES Sons are there?

Des sons versus DES daughters image
Less research has been conducted on men’s Diethylstilbestrol exposure, yet there are as many DES sons as DES daughters…

According to DES Sons International Network, the exact statistics on the number of males exposed to Diethylstilbestrol before birth are difficult to obtain, but the most reliable estimates from within the U.S.A. place the figure at somewhere between 200,000 and 1.5 million males born between 1947 and 1971 (the years that Di-Ethyl Stilbestrol® was used to support pregnancies in the U.S.A.).

DES sons were also born in a number of other nations (Canada, Europe, and Australia) but reliable statistics on global exposure rates are unavailable.

 

DES Sons or the forgotten piece of the jigsaw

Despite the fact that women who have been prescribed Diethylstilbestrol during pregnancy gave birth to as many sons as daughters (1 to 3 million each, in and beyond the U.S.) far less research and advocacy on behalf of DES sons have occurred. Nearly 90% of the primary research on the human health effects of Diethylstilbestrol has been limited to DES daughters, and most of the public health research, education and advocacy has centered around concerns of DES daughters only.

Although less is known about the consequences of diethylstilbestrol exposure in men than in women, a number of studies have confirmed and identified some important health concerns. It is therefore important for men who know or suspect they are DES sons to be aware of possible problems and know what to do about them.

Health problems experienced by DES sons range from harmless irregularities to problems that may require medical treatment. Many people, including some doctors, do not know that men can be affected by DES exposure. The fact that genital anatomic abnormalities in boys exposed to Di-Ethyl Stilbestrol® in utero are not well known by gynecologists was highlighted in a recent study published in June 2011 by the National French Agency for the Safety of Health Products (AFSSAPS). It has been estimated that as many as half of all DES Sons are currently unaware of their exposure.

When DES advocate Michael Freilick said to his doctor he was a DES son, his doctor replied: “Forget it. It has nothing to do with your testicular cancer.” Sadly, Michael who was president of DES Action USA passed away in July, 2011 (his death is unrelated to DES). “As a DES Son who had surgery for testicular cancer at age 29 he learned that men, and especially young men, need to pay more attention to their health. He wanted to alert them, and spoke out where ever and whenever he could. Michael used his experiences to show how early detection prolonged his life for decades” comments DES Action USA. Always pushing for continued research for DES sons, his contribution and legacy to the DES cause and DES sons in particular are remarkable.

What to Do if You Are a DES Son?

Tell your doctor and be sure to learn about the most common symptoms associated with the conditions referenced on this page.

Don’t stay alone, join the DES Sons’ Online Discussion Network for support and information on the latest DES research findings.

The DES Sons International Network was founded in 1999 in order to accomplish two major goals:

  1. Provide support for males from around the world who were exposed in utero to Diethylstilbestrol.
  2. Strengthen understanding, awareness, and major research about the range of adverse health effects that DES sons have experienced as a result of their exposure.

I would like to take on the opportunity to thank all the men and DES sons who commented on my facebook page or contacted me since I launched the blog in February 2011. Please break the wall of silence around the DES issues, keep commenting and sharing your DES stories. Together we are stronger!

DES Sons (Part 1) to be continued – read our next posts on the DES sons studies and Diethylstilbestrol gender identity.

Sources: DES Sons International Network, CDC, DES Action USA

9 Replies to “DES Sons Numbers and Health Concerns”

  1. I was born two months premature 0n March 1962 due to some RH Factors. My Mother was treated with high doses of a synthetic hormone called Diethylstilbestrol (DES). I have physical defects as a result namely epididymal cysts, micro phallus, infertility, stunted secondary sex development and a life long battle with major depression. Early treatment was focused on my depressions and I was labeled Bi-polar as a result, a diagnoses complicated by my deepest secret being withheld from doctors. This critical information was not only a secret from professionals, but also my family, friends and my priest, casting me in a cage of shame and guilt and I seemingly powerless to be free.

    Even as a child I knew I was different! From around age five I knew I was really a female even thou I was seemingly born male. Something went terribly wrong along the way. I never understood why I felt the way I did. I only knew the conflict between my sense of being and the worlds expectations. This unrelenting prison was an oppressive nightmare that never lifted. To make matters worse my understandings of gender vs. sexuality were confused. You see even thou the feeling of gender where female my sexual attractions were not congruent, namely I had no attraction to men and very little attraction toward women. As you can imagine I was a very confused youth. In 1985 I first realized others existed like myself, only instead of making me feel better I got worse, sadness and despairs grip was firm until 2009.

    While in a hospital waiting room on behalf of my Mother I read an article pointing to the hardwired issue to GID ( gender identity disorder) and DES Sons. This connection is based in the brain. DES is a drug the FDA banned in 1973 after some 50 years of use because of its established mutant qualities. The synthetic hormone was used in preventing miscarriage and later with prostate cancer patients. The drugs primary action was as a anti LS Hormone (Luteinizing Hormone) produced in the Pituitary Gland that directs sex hormone production and development of antigens, namely Testosterone. recent studies conducted have confirmed natal DES Sons have shown marked under development in several areas as well as endocrine imbalance’s. These effects have been shown to alter the size and activity of the Hypothalamus and Pituitary Glands as well as the grey matter within the brain. These glands represent the largest impact on sexual development and behavior of any gland . The result of natal exposure leaves the effected patient /child with the brain of a female even if it is in conflict to DNA markers. The time of ignoring the DES Son must end , the suffering has gone on to long.
    Nehael Jae

    1. Will you please accept two very simple words : thank you.
      Fifteen years ago I met a very shy, introverted girl who told me that she felt like a boy inside. I knew nothing about GID then and luckily did not try to find any “rational” explanations – there were doctors and psychiatrists round for that. I just listened and was there and am still, very close to my now adopted and loved “godson”. We have shared so much over these years and it is with emotion that I read your message.You have crossed a desert wider and lonelier than the Sahara, from the deeply hidden secret linked to the feeling of shame, guilt and powerlessness through years of incomprehension and depression to the revelation from the article you found in the waiting-room till now, in 2011 when you can offer your experience to others. You are reaching out and forwards – offering something to help others.
      I would never have linked GID to DES. This is something which must be told to other DES Sons and researched.
      I am a DES mother or 74, with two DES daughters and one young grandson. I have progressively learnt to come to terms with my feelings of guilt and take part in DES groups both in France where I live and sharing with others over the world. I will copy your message, translate it into French and send it to the GID psychiatrist I know who will certainly learn something new to research professionnally. And I’ll share it with the DES group here.
      I hope that one day someone will find your message published in a magazine and that it will change another life. Isn’t it important when at last we can share from on the other side of the desert. Just again – thank you.
      Pam

    2. p.s.to Nehael
      As I was making a nice cup of tea, I suddenly found myself getting very angry about “labels”. A silly example came to mind but related somehow to your message.
      First for the silly one : if I were thinking of eating some Baked Beans on toast and on opening the tin, I found some garden peas, I would certainly feel cross, probably throw the peas away and write a protest letter to the Baked Beans producer who should have the professional competence to put the right label on the contents. (sorry – especially if you don’t like Baked Beans). Tins are not people !
      Now for the link – you were “labeled Bi-polar” whereas no-one, not even you yourself could understand what was going on inside and why… but a label is reassuring, the professional medical “label expert” knows and sticks plenty of glue on the label to make sure it isn’t easily removed. Grrr ! Why cannot we say : “according the information available at present and to our present-day knowledge, it may possibly be….” or even “we cannont explain this and so far do not know…” – then a loose label would be available for researching, but not stuck on the PERSON, qualifying him. Why can’t we say how sorry we are when we learn mistakes later after further research ? And above all, try nevet to let a label be stuck on a person. You as a person were living with a secret worry which needed years of silence and the sudden revelation from an article to come to light. You had to try and live with that tabou, you were’t it.
      I hope you won’t be too cross at me for my flippant example but as you can guess, I am really angry that you should have had this label stuck on your forehead from childhood years and I hope you will tear it into tiny shreds and get rid of it. You are a person and a very fine person too !
      Pam

  2. I am a 46 yr old male born in 1966 and am a DES baby. My sister was a also a DES baby. Luckily the side effects we faced were as severe as some others, so I count my blessings. My sister has as odd-shaped uterus and it took her 14 years to conceive, and the proud mother of a very intelligent young man.

    For me, my wife and I had difficulty conceiving. It was found that I had 5 or 6 vericoseles, which were damaging and killing my sperm. My urologist suspects the large number of vericoseles is due to my DES exposure, since that number is high, but they can’t be certain. I still monitor myself for things like testicular cancer.

    Keep up the good work to inform people who may not know they were exposed to DES.

    Thanks, Ken

  3. I am a DES Daughter – born in 1959. I always wondered about boys born in similar years – what affect did DES have on them? Thank you for sharing this information. My older brother had testicular cancer as a teenager. I was never told if he was a DES Son. In the early 70’s I don’t think they were even putting the two together.

    Is there any research done on adult DES sons and testosterone levels?
    Also I have recently read about increased rate of birth defects in children born to DES daughters. My so was born with a congenital heart defect and my daughter has suffered from high anxiety and depression.

    thanks for all you do.

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