I was exposed to DES before I was born. My mother was given the medicine while she lived in a Catholic maternity home in NYC in 1967. They told her it was a necessary vitamin, even though she did not have any issues with her pregnancy. Nobody told her what DES would do to me, her unborn baby. At the time of my birth, and towards the latter part of her pregnancy, she thought it was odd that her breasts didn’t swell and that did she produce milk. Nobody gave her an explanation. After suffering from postpartum depression, she was told they found adoptive parents for me. She was shattered and became even more depressed for years to come.
A DES Daughter
At 18, I noticed I didn’t have a menstrual cycle. I was brought to a gynecologist. She tried to complete an examination on my organs. I had to fight her off, since it was too painful. I was sent to a specialist in NYC who determined my birth defect. He completed an MRI, which at time (1987), showed an underdeveloped uterus. My fallopian tubes and ovaries appeared normal, but my vagina was smaller. I was told at age 19, if I chose to have children, it would have to be done through a gestational surrogate. This was shattering and I became depressed for many years. I had such a difficult time fitting in with peers. I felt so different like nobody could relate to me. I must be some kind of freak.
Believe it or not, I actually married. The man I married accepted me. He knew for many years of my DES exposure. He loved me unconditionally. Unlike many married couples who experience infertility after marriage, my husband already knew what he was getting into. One gift to come out of this horror for me, I found true love.
The Consequences of DES
The years progressed and medical science improved. In 2003, I underwent a laparoscopy which gave a more definitive diagnosis. It was the same as above, except they used term “floating uterus” and it was determined that I do not have a cervix. Again, I revisited that part of myself that felt like a freak, but I learned to accept my diagnosis.
It was medically determined that I was exposed to DES before I was born. I learned what made me feel like a freak was called a DES injury. I also learned that other women and even men were exposed to DES before they were born too. When I met my mother, we pieced together this tragedy, and it has been very painful for both of us. The DES injury will never come between my love for my mother. It was never an issue that drew us apart. Maybe this pain drew us closer. I prayed my whole life, I prayed, “Lord, if you can’t give me my own child, could you please give me the gift of meeting my mother.” The Lord granted me this gift.
In terms of my health, it has been good. The only medical issue I have is hypothyroidism. I never had my eggs frozen, but I still live with the fantasy that I will one day give birth. I will never part with that fantasy, and if someone out there thinks I am a freak for never giving up on that dream, it doesn’t hurt me anymore, because nobody is a freak for dreaming.
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This article was published originally on Hormones Matter in September 2013.
I remember hearing my mother talking to a neighbor and telling her that she had almost miscarried me when she was pregnant. She said they had given her a new trial drug but they couldn’t say what side effects it would cause. I had endometriosis and a D&C early in my marriage which showed that one of my ovaries was blocked. After trying to concieve year after year we finally accepted the fact that it wasn’t going to happen. Now I wonder if this drug left me sterile. I was also diagnosed with Lupus although they thought at first it was rheumatic fever. With God’s blessing my Lupus never gave me trouble again except for alopecia spots on my head from time to time and my body aches but I’ve managed it.
Mother took drug in 1946 . I have just about every thing. Take to long to list. Wish she had never taken.
My mother is also a DES daughter. My grandmother took it while she was pregnant with my mom. My mother had multiple miscarriages and breast cancer in her late 40s and is 60 and currently fighting uterine cancer, but her prognosis is good. I suffer from Lupus and other autoimmune diseases, but it’s under control. Nothing is wrong with my brother. My mom found out that my grandma took DES the day before her wedding. I found out the my grandma took DES, when I was 14 and diagnosed with lupus. I also have very heavy periods and a blood clotting, plus I also have Psoriasis and I am a type 1 diabetic. I hope that the CEOs of Eli lily and the other Pharmaceutical companies go to prison for what they did.
Hello Tara, thank you for your honesty in commenting on my post. Your timing is uncanny based on what I’m going through with my health at moment. It is racking my brain and I would benefit from another person’s input on the subject. Would you mind if I talked with you or email you? I have nobody to compare my current experiences to. If you don’t I will understand. Thank you!!
Thank you for sharing your story. It’s a sad story, except for the part that you found your true love. I wish you two a happy life. I haven’t know that DES could be that harmful, and I believe many people neither. I know a golf-mate using this “vitamins” from time to time. I will share with her your post.
Thank you Paul. And thank you for thinking of a friend of yours you are concerned about. If not mistaken, I’m not an expert on subject, but DES in the form it was provided in 1960’s, is no longer on market, but moderators of this thread and other expertsbcould speak more on that subject. The most frightening thing is Paul, is there is a whole new generations of Moms and people being impacted by the dangers of pharmaceuticals. It is terrible to think about.
What a moving story, especially that your precious husband loves you for who you are. You have the heart of a mother, which not all who give birth to babies do…..
Thank you Bev. Yes, I’m very fortunate on that regard. God closed one door and opened another for me, that’s for sure! I’ve been given various opinions on the health of my ovaries, I have normal ovaries, yet I did not get a gestational surrogate, an option offered to me at young age. Pregnancy is a lot of wear and tear on a mother, so I never opted for a scientific option of having my own children. Now in my 40’s, a gynecologist said she is not sure of the health of my ovaries, more could be known now, and the thought of passing down a DES injury to my baby, is devastating. My two “babies” are miniature poodles who follow me everywhere. Thank You!!
I am 61 years old. my Mother was given DES so she wouldn’t miscarry me. I have had a full hysterectomy at 44 years old due to endometriosis. I they grew back a fully functioning ovary with a huge cyst on it and an elevated CA 125 which is a cancer marker of some sort. I have multiple autoimmune difficulties. I have had 4 thyroid surgeries with tumors and thyroid removed, in all i have had 24 various surgeries , I was born with 20 permanent teeth missing… Interesting.. i am wondering the relationship if any… my Mom at 92 hand had her tonsils out.. no other surgery. My sister , No DES exposure has had 1 surgery her gal bladder removed… ummmmm Wondering , Marian
My mother is the same age as you and now she is battling uterine cancer. My grandmother took DES while pregnant with my mom. I have Lupus because of what happened.
Marian, thank you for your honesty. I also have mysterious medical concerns, now at age 49. Nobody seems to have any answers for me. It seems each DES injury presents differently, puzzling doctors- at least the gynecologists I’ve gone to. I have gotten various opinions, some just call it a Mullerian anomoly- I’m not sure if doctors stay quiet on subject it can be a DES injury resulting in the Mullerian anomaly. From my research, DES injuries fall into a larger category of Mullerian anomalies. I have had my gall bladder removed in 2006 upon an emergency basis for extreme pain. More recently, I’ve had enlarged liver and diagnosed with fatty liver. I had a non-obstructing kidney stone. Through diet I’ve gotten my liver enzymes and its’ size back into healthy range. I have an enlarged uterus with mass that an gynecological oncologist wants to remove. Nobody has biopsed, they just want to remove all my female reproductive organs and I’m devastated. I’m going for second opinion. I have no symptoms. Would anyone say, the medical industry keeps quiet on this subject? I feel they do.
Brilliant!!!!! Thank-you Mary Anne for providing a voice for these victims. These pregnant girls and women could not consent to this because they were locked up.