DES Daughters

What is a DES Daughter? Who are they?

DES Daughters are all the women born between 1938 and 1978 who have been exposed in utero to the anti miscarriage drug and man-made estrogen Diethylstilbestrol (or DES in short) Diethylstilbestrol DES Google+ Page icon.

They live in the U.S.A., Canada, Australia, Europe and all corners of the world where the drug was prescribed decades ago during pregnancy.

DES Daughters during a DES Symposium image
DES Daughters during the MGH Boston 2011 DES Symposium – Andrea Goldstein, Caitlin McCarthy, Cheryl Roth.

16 Replies to “DES Daughters”

  1. Just wanted to know if there is any research to date that connects DES to Trigeminal Neuralgia? I have this horrible disease along with others(chronic illnesses). I have endured many procedures and now considering MVD. Anything out there that connects the disease with the DES,

  2. Leslie, I have the same question. I am a DES daughter and have had fibromyalgia, chronic myofascial pain, and arthritis for 20 years. I recently was diagnosed with trigeminal neuralgia (!) as well and was wondering if it was connected and my search led to your post. I was reading about third generation effects and my daughter was diagnosed with an intramedullary astrocytoma (malignant tumor entwined in her spinal cord) when she was 18 months old. I wonder…..
    Hope there is someone out there who might have the answer.

    1. I’m a D.E.S daughter also. I have fibromyalgia, chronic myofascial pain, and arthritis since I can remember. I’m in chronic pain from head to toe. I had a hysterectomy when I was 25 and could never carry a baby to full term. I have had tumors and cyst throughout my body especially in my female organs. Just sayin, it is probably all connected to diethylstilbestrol. I was born in 1955.

      1. Interesting, I too have fibromyalgia and m.e. I also had to have hysterectomy at the age of 28. Trying to find out if des could have anything to do with it.

    2. Hi Shelly, I can’t answer your question but I too am a DES daughter and suffer from fibromyalgia and m.e. I’m now questioning if des could have anything to do with it.?? Wishing you all the best.

  3. I am a des daughter and I had menopause at 36 also have hashimoto’s thyroiditis, m. e. Fibromyalga, arthritis, psoriasis. And scoliosis among other things. And no doctor will take me seriously about des. They just phew phew it

  4. Does anyone know if there are any connections between DES and Meniere’s Disease and vertigo? My mother was given DES and I have had cervical cancer and a tubal pregnancy which I understand has been related to DES. I also pick up viruses – cold and flu very easily.

  5. I am a DES grandchild. I am gay and I had an non-cancerous fibroid when I was 32 years old. It cause extremely bad periods (very long lasting clotting heavy periods) I had to have a hysterectomy at 33 due to it being unbearable. My biological mother had breast cancer at 22 years of age who had a mastectomy and beat cancer but lived only until 43 of age before passing of cancer. DES needs to be more informed by the public due to all the issues it has caused in life. We should have Medicare for life due to this drug alone and our entire bloodline because of the issues it has created.

  6. My mother was given injection of DES when she was 7 mo pregnant with me and stayed in bed the last 2 mo.

    I was taken off all dairy at a very young age. Anaphylactic from a food. Allergies, migraines, and headaches all my life. Extremely painful periods in high school. I have a tipped uterus.

    Miscarried first pregnancy at 19.
    Extreme problems with delivering my only child at 24. Lost contraction readout and baby heartbeat during labor. Almost had a cesarean. Shortest umbilical cord my doctor had ever seen.

    I had to terminate a 5 mo pregnancy due to severely abnormal ultrasound. My baby had no cerebrum.

    I’ve had mild cervical dysplasia.

    Have had two sinus surgeries. (Chronic sinusitis)

    Had eye procedures for cataracts, salzmann nodular degeneration, and borderline glaucoma. I also have presbyopia.

    I have a supernumerary nipple. Extremely small breast nipples as well. My veins on my hands have always been enlarged.

    Endometriosis at 38 (severely damaged ovary) Hysterectomy; oorophectomy followed a year-and-a half later.

    Breast cancer at age 60. My mother had BC at age 83.

    I always had horrible teeth (calcium deposit).

    None of these problems have affected any of my other 10 siblings.

    I feel blessed to have an amazing son and daughter-in-law, 3 beautiful grandchildren, and of course, my wonderful shitzu ZsaZsa.

    Because I had NON-invasive breast cancer (DCIS with lumpectomy and radiation) I was not able to be included on the pharma law suits that others have rightly benefited from. In that regard I am very veRy grateful that I’ve been spared from the worst outcome of this horrific disease. Through it all, I thank God.

    1. Thank you so much for sharing your moving testimonial, in depth, with our audience, Virginia

      Amazing to read you still see some positive and remain optimistic

      Best wishes,

Have your say! Share your views