has anyone else been affected by their mother's taking stilbesterol (DES)?

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

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  • I only read about DES a couple if weeks ago after my sister read an article in the dail mail & advised me to read it. I was unaware my mum had taken it years ago following several miscarriages. Although I'm sure in my case it's coincidental; I had problems with dodgy smears in my 20s & had all sorts of treatment & was advised 2 have children sooner than later as a hysterectomy looked likely at some point- luckily this did all settle down after baby no 3 & I've been fine since. I had my menopause at 43- at the time this was put down 2 shock as my husband had just died. My sister & mother didn't have theirs till they were in there mid 50's. In dec last year I was diagnosed with discoid lupus after a year of a horrid rash on my face. Like I say, coincidence? Who knows? But the symptoms seem very similar but in my case not as severe.

    Hope your ok x

  • Frankie, am so glad you replied

    Yes, I think I'm ok, and it sounds like you are too

    It just feels a lot better to be in touch with you, here in the uk. There was one USA woman on an international lupus forum I attended before this forum started up last year. We exchanged basic info briefly. Which was v interesting: she seemed to be a v brave lady, with a lot of complications due to DES. My sister's husnad & his sister are both DES babies. She has had several children and then a hysterectomy, and has other health complications probably unrelated (?).

    I too had an early perimenopause and menopause both in my 40s. And it lightly creeps me out that knowing my DES history my gp let me take the pill and then use HRT....now I understand the last thing we hould have is more oestrogen. But I guess no one can be informed about everything, no gp is perfect. When perimenopause hit mwith probs, that was as the first time since I was examined in '71 that I looked into DES again...and then I only basically sorta took in andI filed the info I found and sorta forgot about DES until my SLE diagnosis came out last year. At that point I forced myself to google DES for updated info, but not obsessively, I promise. I am not on some weird vendetta or anything: I just want to get a basic grip on the subject and feel less alone here in the uk

    Anyway, I did find some interesting info over the past year, inc how academic researchers have begun to publish re evidence that DES and autoimmune conditions maybe being related. And i found out a bit about other ways DES has been used etc and is still being used (as is thalidomide). If you are interested I will be vvvv glad to pass on some of this to you. But no hard feelings if not

    I am just so touched by your reply and grateful: your solidarity, your kindness means a lot to me

    XO

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