By Barbara Leonhard | Featured Contributor
As we grow and develop, we learn how to identify with many labels or roles, such as daughter/son, aunt/uncle, mother/father, and grandmother/grandfather, to name a few. It seems as though our stories are written before we are born to conform to these labels. In a way, these roles become rituals that comfort us as we agree to them and even expect our lives to go “as planned” based on our social codes and blueprints for survival.
I know I certainly expected my life to unfold much like my mother’s life did with marriage and family. She had seven children, and being the second oldest and oldest girl, I was able to help with all the babies she had. It never occurred to me that I would never be able to have my own children. Little did I know that my helping her at the ages of 9 and 10 with my youngest siblings would be my only times to experience at least part of what a mother does for her kids. I am not sure I appreciated this time because as much as I loved playing mommy, I also wanted to be with my friends.
I am uncertain when it came to light that my uterus was T-shaped, and my OB/GYN often had to remove polyps from my cervix to prevent cancer. There were other cancer scares throughout the years due to fibroids found in my breasts and ultimately a tumor, which appeared in the classic spot for uterine cancer. I was perimenopausal for what seemed like years, so my hormones were unstable, causing mood swings and depression.
These symptoms introduced me to a new label: “DES Daughter”. DES Daughters (and Sons) are children whose mothers were prescribed a drug called Diethylstilbestrol (or DES) while pregnant. It was administered to women between 1941 and 1971 in order to prevent problems such as spotting and miscarriages. Because the drug was a synthetic form of estrogen, it was assumed to be safe. It was also prescribed as hormone therapy for women during menopause and a treatment for prostate cancer and breast cancer. Despite these promising indications, DES had adverse effects on children, including malformed reproduction organs, infertility, cancer, blood clots, fibroids, and cardiovascular problems. Even new generations would suffer the same conditions.
My mother told me that Diethylstilbestrol was prescribed because she had been spotting. She didn’t take the pills for very long because she instinctively felt consternation about it. Still the damage to my tiny body was already done, and the scope of it would torment me for years.
A Broken Womb
Needless to say, I was very upset about the effects of the drug on my life. In fact, I was angry. I felt violated and cheated. The worst thing is the day I had such terrible cramping that I thought I was getting sick and ran to the bathroom. Afterwards. I noticed a small clump of tissue and blood in the toilet water. In my heart, I realized I had just had a miscarriage. My uterus was so malformed that it couldn’t hold the fetus. I felt guilty for losing the baby, so I kept this news to myself. This loss sparked deeper depression as well as resentment and anger toward the medical community for developing DES and my mother for taking the drug. I saw myself a true victim of the circumstances and unworthy of being a mom because I was unable to bear the fruit.
When I was in graduate school at the University of Missouri-Columbia, I was so fortunate to fall under the care of Dr. William Griffin, who was a DES specialist. He kept close watch over me for many years, and I think I saw his twice a year to check for polyps and tumors.
Because I wanted to have children, he explained an elaborate procedure I could do to sustain a pregnancy. The egg could be implanted in vitro, he would tie off my T-shaped uterus to prevent miscarriage, and I would come in for daily hormone treatments throughout the pregnancy. However, when I learned that even my baby would suffer from the effects of DES, I decided that I couldn’t bring children into the world to endure the same physical and emotional distress I endured. Meanwhile, with my demanding job, having to spend so much time at the hospital getting daily hormone treatments was not viable. Why couldn’t I have children naturally? It just wasn’t fair…
Barbara Leonhard is a writer, poet, and blogger at Extraordinary Sunshine Weaver. Her podcast Poetry: The Memoir of the Soul explores universal themes such as Grief, Kindness, and Presence. She taught writing for many years at the University of Missouri and is the author of Discoveries in Academic Writing. She is also a regular contributor to Free Verse Revolution, PhoebeMD.com, and Go Dog Go Café.
Poetry Blog: extraordinarysunshineweaver.blog
Poetry Podcast: meelosmom.podbean.com
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Categories: Featured Authors, Inspiring Health Stories
I am so sorry to hear this. This is hard to say. Thank you for sharing your story with us. I am sure that God still has an awesome plan for you. For God says in Jeremiah 29:11
“I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”.
I do not know what God has in store, but I do know that he is full of good surprises and creative miracles. I would advise that you take this to God in prayer, tell him how you feel. You might find an even bigger gift in him. God makes up for things, he fixes things, and he gives hope.
Thank you so much for sharing this story. May God’s light shine on you, In Jesus Name, Amen.
Thank you for sharing. The struggle is real. May God continue to strengthen you and give you peace.