in 1953 my mother was prescribed the oestrogenic stolbesterol after 10 years of miscarriages, and told bed rest + this med for 9 months could help her carry a baby full term. she was delighted to avoid another miscarriage, but upset when the news broke in '71 that stilbesterol had been banned internationally due to its carcinogenic effects. it was recommended that all babies like me were checked out by gynies. stilbesterol had affected me, and i've never been able to have children. more recently published research papers indicate that this sort of oestrogenic may be one of the pharmaceuticals that can cause SLE.
i was diagnosed with lupus and an infant and as a teen, but my mother never told me. instead i have spent 58 years being treated by a bunch of different nhs clinics without anyone connecting the dots and testing me for an underlying condition until last year when SLE, MCTD etc was diagnosed. no
w my gynie tells me she thinks it's likely my exposure to stilbesterol could be one of the main reasons i have SLE etc. after all, she said yesterday, oestrogen is likely to be involved in lupus as so many more women than men have lupus. not that i want to blame anything in particular for my condition (least of all my dear 90 year old mother, who has always done her best by me) rather, it's just good to have some sort of sense of how this has happened to me.
anyway, i know 2 people in the states who have also been affected by stilbesterol, but no one in the uk, although i've been living & working here for over 30 years.it would be great to know someone here who has DES in their background. the good news my gynie gave me yesterday is that the nhs has a protocol for caring/follow up of us, so now i'll have annual colposcopies. but this care only seems to have come my way due to my lupus diagnosis making my drs take me more seriously. and all this does seem to have come a bit late in my life....and it does hurt a bit that in 30 years of being in the system and alerting drs to my stilbestrol history, no uk dr has even admitted hearing of this internationally notorious drug (which affected the internal reproductive organs of babies like me as greatly as thalidomide did so many babies limbs at just about the same time)
so, i guess i'm partly reaching out, and also partly venting here. i have a feeling there will be other stories similar to mine about other medications that have in some way been implicated in giving others lupus. well, i feel for anyone out there wanting to understand and get a grip on this sort of thing