Did your mother take Diethylstilbestrol (DES) while pregnant with you?

@hopeful33250 Please share the code with Mayo for coding of DES Exposed Patients.

Thank you.

@kmfdallas
Actually, I don't have the authority to share it with Mayo Clinic. I'm sure they will eventually hear about it. From what I read, it is not a principal diagnosis code, but rather a circumstance that influences a patient's health status. It is very interesting.

Have your physicians noted this in your patient records?

@hopeful33250 My Dr was excited to be my first doctor to code it on Jan 21st. Coding is so important because it is the gateway to collect exposure data along with other health conditions related to DES Exposure.

I have pushed for years for the electronic medical record to include 2 questions "Are you DES Exposed" and "Do you have a family history of DES Exposure?"

This code with help with quality metrics going forward.

Karen

@kcreel78 Take a look at the French study. 85% of 720 participants had attempted suicide. I've suffered depression. Wrote a memoir about it after I read that report. I have hung onto a 15% statistic I knew nothing about all my life. I'll hold on forever now. I hope you will too. https://www.intechopen.com/chapters/63714

I am a DES daughter. My Mother was given DES in the late 1960's because she was afraid of a miscarriage. I've had PCOS, endometrial cancer, and late diagnosed autism, which some studies say is linked to DES. I chose not to have children after learning that the damage from DES could be passed on.

@gaviidae You are not alone. The myriads of effects of DES exposure.

@cyndiefromnc I only actually tried at age 11 but I've had suicidal ideation since before I could remember. Therapists have attributed to having a mother with borderline personality disorder and abuse but DES was never brought up nor can I prove whether she was honest about that or not. Any time I've tried accessing my birth records im always told they aren't available. Her husband worked there for decades so i had thought he would be able to help but he always refused, which was odd since we were relatively close til I went no contact with my mother. I also have whay used to be called aspergers and adhd and have had 2 TBIs, one at 18 months old from my mother and the second at 20. I suppose all of those could be a factor. As much as I really dont want to be here, I'm also terrified of what happens when we die, not a fan of anything traumatic and painful and i have ny kids, grandkids, husband, pets and grandpets. I don't think I could do that to them specifically.
I'm glad youre hanging in there. Its hard to describe what ir feels like having constant ideation and having never actually truly felt happy to anyone who hasn't been through all that. Plus, wouldn't it be incredibly insulting to hear your spouse or parent say that to you? So I don't. Like, they know I have constant depression, autism and adhd, cptsd from mommie dearest but I leave out the never felt true happiness.

Fifty years ago, this past, February 14th still breaks me open like it was that fateful day and the memories are still with me.
On this day in 1976 I lost my last baby — another ectopic pregnancy, another cruel consequence of my in-utero DES exposure. It wasn’t just a medical fact; it was the sudden, cruel end of every hope I carried for another baby.
I knew I was pregnant. It was the 1970s; when I called my doctor, he said it was too soon for a test. Weeks crawled by. Pain came and became worse. I went to the hospital in Boston and stayed for more than a week. On the morning of the 14th, they told me I could go home — that the baby was fine and safely in my uterus. My husband and our two-year-old went home. (Flashbulb Memory – I can see the three of us in the elevator leaving the hospital excited because my baby was ok)
By 8 p.m. that night the pain was unbearable and a “10” as I was laying on the couch. (Flashbulb Memory – I can see myself on the couch in our family room writing with pain).
The ambulance ride back to Boston felt endless — my blood pressure kept falling, and I remember the fear like a physical thing squeezing me. (Flashbulb Memory – I can see myself in the ambulance and remember the EMT taking my blood pressure I can still see the EMT’s hands on my arm and hear each time my blood pressure was taken) It was low and kept falling.
I arrived at the hospital and then my husband arrived shortly after me. As I left my husband to be rolled into the operating room, I remember seeing the surgeon telling my husband that I might not survive. (Flashbulb Memory) The fallopian tube had burst and I was hemorrhaging internally.
I woke up during the surgery and could hear voices around me. (Anesthesia Awareness) I said to myself “I am awake and they do not know that.” That memory of waking in that cold, bright room still follows me today. (Flashbulb Memory) The bright lights, the cold instruments, the sound of voices distant and uncomprehending — that terror follows me today.
The surgeon removed my remaining ovary because it would not be identified within all of the blood and tissue. At twenty-six, I was now sterile and plunged immediately into surgical menopause — hot flashes along with grief, the hollow shock of loss that would remain with me forever. When my parents arrived, there were no words — only my mother’s arms and her tears on my cheek, both of us knowing the depth of what had been taken. (Flashbulb Memory)
When I came home, I could barely leave the bed. The crying was not a sadness that ebbed — it became the air I breathed: long, keening, guttural sobs that lasted for weeks. The crying wasn’t occasional; it was a landscape I lived inside. Deep uncontrollable crying that I could not control. (Flashbulb Memory)
I still don’t know if that baby would have been a boy or a girl, but it was my baby, and one I would never be able to hold and watch grow. The ache of that emptiness is something I carry every February 14th with grief and tears.

Karen
DES Daughter

“Flashbulb Memory: A flashbulb moment refers to a flashbulb memory, a highly vivid, detailed recollection of the circumstances surrounding learning about a surprising, emotionally charged event. These memories feel like snapshots due to their intensity, often including where you were, what you were doing, and your feelings at the time.”

My mother had 2 or 3 DES injections in 1959 when pregnant with my younger sister, due to one previous miscarriage. Yes, only one prior miscarriage! Certainly not necessary for that drug intervention! I don't know when in the pregnancy she had them, but they weren't given from any miscarriage symptoms in the pregnancy. She can't remember exactly how many injections, and tried to get her medical records about them, but they weren't available. Probably because too long ago.
My sister had severe PMS, including rage, and weight gain from age 15. She was physically violent with me (not sure if that was only premenstrually), and her psychiatrist put in a mental health facility for a few months in her teen years. She was on the Pill on and off also, which could have made things worse.
She's had precancerous cells on her cervix, and one symptom that isn't being mentioned here, a problem with her son in utero sitting too high in her womb, jammed under her ribs. This resulted in a boney ridge on her son's forehead, and he had surgery on it when he was a baby.
DES can cause a triangle shaped uterus. So her baby didn't have enough room.
I told mum about this, but not my sister (I wasn't speaking to her at the time). Mum said, Don't tell Glenda (sister) due to her temper, as mum was worried Glenda would verbally abuse her and blame her. The whole family knew of her temper and occasional violence. I told Glenda after mum died.
My sister's teen son has anxiety and low self esteem. I can't get along with my sister, as she has like a split personality, nice for awhile, then nasty, critical, and is narcissistic at times. She's 67 now. I haven't heard of any other health problems, but we became estranged again in 2017, after her verbal abuse. Her weight stabilized in her 30s. I think that was after going off the Pill.
I've had to totally cease communicating with her for the final time for my own emotional wellbeing.

My mother, who was a maternity nurse, had several miscarriages/stillbirths before me. When she became pregnant with me in 1937 (I was born June 27, 1938), her doctor (Dr. Levine, I believe), told her he was going to give her something new that could help. What was it? It might have been DES, because that was new at the time. Although someone at NIH said it wasn't available to the general public at that time, I think that a doctor could have requested it. I have seen some other documentation that stated it was not limited to the "beginning in 1938" time frame. I have wondered about that, because I have had problems with anxiety and depression that began in my teen years. Also, one of my sons had an episode in which an immaturity of the nervous system caused him to stop breathing briefly as an infant due to a slight fever. The same son died at the age of 27 of lung cancer that metastasized to the brain and was inoperable, so I often wonder about this. It was about 6 months from diagnosis to his death.