The daughters of Distilbène
Agnès
“I am a DES girl, my sister too. I had skin cancer when I was 25, but the link with DES is not obvious. I had five early miscarriages before going to adoption. We did not go to the end of the process (15 days from the award) because I was pregnant again and could not take the risk of going to China in my state. All precautions have been taken: bed rest from the start of pregnancy, implying a sick leave. I made a threat of premature delivery around 18 weeks of amenorrhea and I was hospitalized for 4 and a half months (including 2 months 200 km from home and one month 100 km).
Benoît was born almost at 37 weeks, when I started walking and climbing the stairs again. It was 45 cm and 2,5 kg (it could no longer grow in my saturated uterus). Benoît is in good health but needs to be monitored for his left kidney, he will probably have an operation at 2 years old. The abnormality in her kidney may be related to the treatment undergone during the threatened preterm delivery where I was reduced to amniotic fluid to relax the uterus. Or maybe a consequence of DES on the third generation, we don’t know …
After a sixth miscarriage, I am currently 13 weeks pregnant. I am again arrested and bedridden. I want to avoid the hospital to take care of a minimum of Benoît who is 19 months old. We have just moved to a new region following a professional transfer. The level 3 hospital is only 70 km away but, on the other hand, we no longer have family or friends to help me while I am in bed. The pregnancy promises to be more difficult logistically… ”
Laure
“I am a distilbene girl, which for me means malformations, ectopic pregnancy, various and varied treatments, inseminations, IVF… I have an 8 and a half year old daughter whom I had after a hell of a fight. I also decided to start this fight again two years ago in the hope of repeating the miracle. “
Virginia
“I am a daughter of distilbene, born in 1975, so at the end of my prescription since this drug was banned in 1977. I had a miscarriage and three ectopic pregnancies. After a quick career in assisted reproduction, I am currently, with my husband, in the adoption process.
I am a member of the association “Les filles DES” and it is true that a large number of women concerned are poorly followed in their career, are still unaware of each other or have to face denial from the medical world. “
Valérie
“I am 42 years old and my mother took distilbene throughout her pregnancy. When I was 28, during my first pregnancy, I discovered that I had cervical cancer. I then had to undergo a hysterectomy… ”
Anne :
“From a young age, I know that I am a DES girl because my mother told me and had me taken care of by a gynecologist in Toulouse. At 16, a first ultrasound revealed a T-shaped uterus and micro-polycystic ovaries. Subsequently, I will also be told about adenosis and, for years, I have more or less regular cycles and often very painful periods. “
Martine
“I am a distilbene girl and I was able to have two children. I lay down from the third month of pregnancy and gave birth at 7 months. But today I have two daughters aged 2 and 5 who are in great shape. So it is possible to have children despite the distilbene. “
Amélie
“I am 33 years old and, like many other DES girls, I have genital anomalies (T-shaped uterus, ectropion in the cervix, endometriosis, dysplastic and polycystic ovaries, anovulatory cycles, etc.). In short, what difficulties to have a baby !!! After several years of hardship, from operations to operations, from treatment to treatment, we managed to have a miracle baby, despite a bedridden pregnancy, super scary, super stressful where every day was counted.
My son was born premature at 35 weeks pregnant, my belly was in any case a real balloon ready to explode… Life with DES is a real film with twists and turns, he never leaves us alone! “
Pascale
I am 36 years old and my daughter is going to be 13 years old. My journey was perilous like many distilbene girls: two miscarriages, the first at 5 and a half months pregnant, a little girl born alive but who did not survive. One year after a second miscarriage at 4 and a half months of pregnancy, the gynecologist wanted to know where it could come from and after a hysterography, venography… the verdict was reached: distilbene!
For my daughter, I had to undergo a strapping that was removed because of too many contractions, and she was born five weeks prematurely. My pregnancy was very difficult: bleeding, contractions, bedridden from start to finish, not to mention repeated stays in the clinic. And there, I just learned that I have dysplasia of the cervix and I have to have an operation. Those responsible must pay for the damage they caused 30 years ago and for the damage they still do. “