My DES Daughter Journey – Introduction

My DES journey started with a miscarriage. When I started bleeding after 11 weeks of pregnancy,  I vaguely remembered what my mum told me when I was a teenage girl about the DES drug she had been prescribed when she was pregnant which may prevent me from having normal pregnancies or even worst from knowing the joy of being a mum. When I miscarried,  this information kept somewhere in the back of my mind came back at once.

Being diagnosed DES daughter meant I would most likely never be able to experience the joys of pregnancy and motherhood. I may never give a daughter or son to my husband; grandchildren to my parents and in-laws. Additionally, I may be under higher risks of developing other health problems such as cancer. I was promised to live the rest of my live with fear, stress, anxiety and guilt to name just a few of the many emotions that went trough my mind the day I was first called .

Making UK doctors and consultants accept to further investigate the reason why I miscarried considering my DES exposure was a lost battle. I was told that it was highly unlikely that I would be able to receive treatment on the NHS (National Health Service) for many months; I should be pragmatic and try for another baby. Since I knew I had been DES exposed, I couldn’t possibly take the risk and put myself through this pain again.

So I returned to France to have first a hysterosalpingography (an infertility test that shows whether both fallopian tubes are open and whether the shape of the uterine cavity is normal) and then an hysteroscopy and laparoscopy (procedure that allows a surgeon to examine the fallopian tubes, ovaries and womb to diagnose and treat a condition). I was very lucky to have both examinations performed by eminent specialists aware of the consequences of DES exposure. The results confirmed a septate and T-shape uterus – uterine malformation typical of daughters whom mothers had been prescribed diethylstilbestrol during their pregnancy.

My womb was like two tiny rooms with a wall in between. No baby would have enough room to grow if the septum was not removed to make a proper home for him to develop and spend 9 months of his life. Professor René Frydman who performed the operation removed the septum and changed my uterus to a room big enough for a baby to develop even though there would still be a high risk of complications and miscarriage due to its shape and other DES related injuries.

Pr. Frydman, obstetrician-gyneacologist and head of the “Male-Couple-Embryo-Children Hospital“, gave birth in 1982 in Clamart to the first French test-tube baby, Amandine, less than four years after the birth of the world’s first baby conceived by IVF, Louise Brown in July 25, 1978 in Great Britain.

When I returned to the UK with the green light to try again for a baby, the battle intensified with health care providers to make them accept to monitor my DES pregnancy and treat me like any DES daughter should be treated.

So I desperately turned to DES Action UK and Réseau DES France for help and support. This is when my DES journey as a DES daughter really started, even though my mum had warned me when I was just a teenage girl about this wonder drug and its consequences. All her fears and what I thought was just paranoia from a loving and caring DES mother were justified. There was no more doubt. I was, I am a DES daughter.

The journey started with a miscarriage and an operation. Now my DES journey is taking a new start with my Journal of a DES Daughter Blog and Diethylstilbestrol facebook page. In between, many tears, fears, many hopes, successes, and three beautiful daughters… The journey continues as concerns for my daughters (DES third generation) arise…