Maureen Tobin-Brinkman

The moment my existence was made manifest to my mother’s obstetrician, in 1959, my developing fetal organs were saturated with a poison. Immediately the poison began chipping away at my future quality of life. It was like a monster growing along with me, gaining power and trying to kill me from within. And so it was, but I did not have a name for the monster until I had battled with it for 58 years.

I have had illnesses my entire life. My healthy siblings have never been hospitalized for anything other than the uncomplicated births of their planned offspring.

At the age of five I had my tonsils and adenoids removed. The bleeding afterwards was profuse. I vomited blood for hours afterwards and believed I was dying.

At five I was hospitalized again for 8 days with pneumonia. An ambulance took me there and back again. I was given no toys and had no visitors. I was ten minutes from home. A nurse bought me a small teddy bear from the gift shop.

My mother treated me differently from her other children. She had no maternal feelings towards me; in fact, I grew up believing she hated me.

She didn’t inform me about her use of DES until I was in my thirties. “Maureen,” She said, “I took a small red pill when I was pregnant with you. The doctor prescribed it. It was called D.E.S. But I only took it with you, no one else.” She portrayed it as a benign substance. We never spoke of it again

At 13, my mother said I needed to have a “physical” in order to play team sports in school. I was surprised she would go to such lengths for me. She didn’t approve of girls in athletics. I was shocked, humiliated and traumatized at the painful extensive gynecological exam that ensued. A nurse held my hand. When I met my mother outside I told her that it was a horrible experience. She replied, “That’s what it’s like to be a woman, get used to it. Oh, and the doctor told me that you will never be able to have children, your female organs are infantile.” Even though I loved playing sports I never tried out for a team again. I was too afraid of what happened to girls when they wanted to do “boy things.” The year of my exam was when the correlation between a rare vaginal cancer in young girls and DES exposure was revealed. Mothers were urged to inform their daughters about their cancer risks and the need for exams.

In 1979 I gave birth to a baby boy, Robert. He has High Functioning Asperger’s Autism. I had adherent placenta after his delivery. The intestinal issues I had suffered with throughout my childhood worsened during and after the pregnancy. Six months later I was hospitalized, undergoing a battery of tests, including a colonoscopy, with no sedation. I bled a lot after the colonoscopy. The doctor said it was normal but I knew it wasn’t right. I was sent home with dietary guidelines and medication. Nothing changed.

I suffered a miscarriage in 1981. A fertility specialist performed an endometrial biopsy due to my amenorrhea. Before the procedure I asked for a pregnancy test. The doctor declined. The bleeding, pinching and cramping pains I had during the procedure continued for days. I was pregnant. I became very ill. The procedure had caused an intrauterine infection that had spread throughout my bloodstream. I was hospitalized and given antibiotics intravenously.

During an OB exam on the day I was to be released the doctor was saying that the baby and I looked fine when his mouth dropped open and his eyes widened. Rising from his stool between my legs and stepping back he stared at the front of his white coat. It was splashed with red. The doctor fled the room, shouting for a nurse. I lay my head back and listened to the sound of my blood dripping onto the tile floor beneath me, waiting for death to take me. I needed blood transfusions again and surgery.

I underwent surgery to remove adhesions in my uterus. In conjunction with this surgery I had a rectal procedure to help with colon dysfunction.

During a subsequent D&C following a miscarriage I hemorrhaged again and needed another blood transfusion.

After much heartbreak and more surgeries I delivered another healthy boy in 1986. I constantly worried that I would lose Dylan, too. I nursed him for almost 6 months, then I had to quit due to intestinal issues.

After a few months of clomid in 1987, I became pregnant with another son, Justin. At five months gestation I had an ultrasound that revealed that Justin had porencephalcy. A small portion in the frontal lobe of his brain did not develop and instead filled with fluid. The geneticist couldn’t predict how Justin would be by affected this condition and found no genetic link for him to have it.

The O.B. I had with Justin was a callous old man. While I was in the labor room he brought in a dozen of his students to vaginally examine me. I said no to this. He shouted, “These are my students and they ARE going to exam you. They need to learn what a woman’s cervix feels like when she and her baby might die.” I felt that my child’s life was in his hands. He spread my legs apart and I turned my head as each student took turns shoving their hands inside me while my uterus clenched with labor pains. The last few students mercifully shook their heads at me and slipped, unnoticed, into the crowd gathered around the doctor. The labor pain was excruciating. I asked for pain medication. The doctor refused, “You need to feel the intense pain when your uterus ruptures as I will have only moments to save your life.”

“I can’t be in any more pain than what I am in now,” I gasped.

“Oh yes, it will be the worst pain you’ve ever felt,” he assured me.

On the delivery table he said that Justin and I were both about to die and he was going to attempt to save my life. I told him, “Just save my baby.” The doctor ignored me and jammed a long needle up through me and into Justin’s head. I felt his little body lurch and recoil from the pain. Then he went still. I was ordered to push a few more times and Justin was pulled from my body and placed in my arms with the words, “Here, he’s taking his last breath.”

Holding my baby against my heart, I memorized his perfect features. I didn’t get to hold Justin long. I was bleeding and my afterbirth was stuck again. The doctor pulled and pried with his hands and tools. The pain was intense. I repeatedly asked him to anesthetize me. My son was dead. I didn’t care if I lived or what he thought of me. He ignored me and asked for a nurse to try. Then he called for, who he said was “a big guy with big strong hands.” The man came in and he rammed his hands up inside of me and tried pulling my guts out, or so it felt. Finally, anesthesia was used when he performed a D&C. I lost quite a bit of blood and needed transfusions.

There were cervical cancer scares when pap smears were abnormal. I had a sinus surgery to open my airways in an attempt to stave off frequent infections. I was still seeing gastroenterologists and using medications for constipation on a daily basis. Fatigue, pain, bloating and nausea were daily companions.

I had more miscarriages, each one consuming me with guilt and grief. After one confirmed miscarriage I asked several times for a D&C and the doctor, another new one due to insurance, refused. He said that it was better if I “just bleed it out.” I spotted for over 6 months. Every day was a sad reminder of what I was losing, of what a failure I was.

I got pregnant again after I stopped spotting from my loss. It was twins. Ten weeks later and they were no more. This was my eighth miscarriage.

I had another healthy boy in 1993, after more surgery and clomid. The delivery was long, painful and difficult. Austin was stuck behind a “lip” on my cervix. After this delivery my intestinal issues intensified. No procedures or medications were working for me. I endured 10 more years of doctors, specialists, tests, embarrassing therapies, and extended stays at the Mayo Clinic. Surgeons then removed my entire large intestine in a six hour operation. They found no reason for the dysfunction. I thought I was a freak and it must be my fault, just like the miscarriages, I was cursed. Actually, I believe that DES inhibited the precise functionality of my intestines in utero and any hormone related disturbance, such as a pregnancy, effectively disabled them further.

I had early menopause which contributed to my diagnosis of osteoporosis. I have chronic vestibular migraines. I have anxiety issues. My immune system is compromised. My intestinal dysfunction restricts my outings and social life.

I’ve endured painful, humiliating, stressful procedures, illnesses and sustained grievous losses. The devastating physical, psychological, emotional and mental damage my exposure caused me is not visible. There is a monster hiding inside of me, it reached out and stole my life. The person I was meant to be was consumed by it. I have discovered the name of the monster.

Its name is Diethylstilbestrol. I will never be free of it and will continue to rage against it, but I am free now from the guilt and shame I harbored. None of it was my fault.

I am worthy of love.

I am not all that I could’ve been but I’m the best me I can be. I have a good marriage, three wonderful sons and four healthy granddaughters.

I am loved

-- Maureen Tobin-Brinkman, April 2021

If you would like to reach out to Maureen, you can send us an email at DESCoalition@gmail.com, or reach out to her directly via her Facebook account that you can find at our Facebook page, https://www.facebook.com/groups/DESCoalition.