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AIBU?

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Anti miscarriage drug scandal - DES

4 replies

Ratherhaveacupofteaandabiscuit · Yesterday 09:11

I was chatting to my mother in law recently and she told me that having suffered two miscarriages she was given weekly injections during her third pregnancy which, she was told, would prevent miscarriage.

She didn’t know what it was called or anything other than the doctor told her to have it and that a district nurse called in once a week to inject her throughout her early pregnancy.

That was in 1966.

Being a retired nurse myself and also someone who loves to research, I looked into this and found out that the injection she had was Diethylstilbestrol (DES).

I read that DES was a synthetic estrogen given to millions of pregnant women across the western world with widespread use in the UK.

I went on to read that women who were injected have a 30% higher risk of breast cancer in later life.

Mother in law has had breast cancer twice. Now of course this may or may not be related but certainly there is no family history of breast cancer.

Baby girls who were in the womb when their mother was injected have 40 times the normal risk of developing clear cell adenocarcinoma ( a rare and aggressive cancer which typically arises in female reproductive organs) in their lifetime, and significantly higher risks of a whole host of other horrible cancers and serious fertility / pregnancy problems.

Baby boys who were in the womb at the time their mother was injected are less affected but still at higher risk of genital abnormalities and testicular cancer in adult life.

Thankfully mother in law went on to have two boys, neither of whom are affected.

Ironically, it was found that DES does not prevent miscarriage at all.

Worst of all is that there was evidence from as early as the 1950s that DES was dangerous but warnings were silenced in favour of profit.

Further studies and reports emerged throughout the 60/70s with dire indications and the drug eventually fell into disuse but there has never been a formal recall or any information given to those affected.

It is of course on mother in law’s medical records that she was given DES but no questions were asked when she was diagnosed with breast cancer.

This does not surprise me given recent patients notes are barely read prior to / during a consultation these days let alone full histories.

There is now a campaign to support victims of DES which, with legal support is pushing for a public enquiry, accountability and compensation.

There is also a uk facebook group called DES Sons and Daughters Support Group.

I wanted to post here in case anybody else might have been affected by this and not be aware so there is no AIBU really.

OP posts:
Cathmawr · Yesterday 09:13

That's terrible OP, and not something I was aware of. Thanks for raising awareness for others!

Ella31 · Yesterday 09:23

That's terrible, I still feel so teary about the poor women and babies that were subjected to thalidomide as well. I remember my granny telling me, [we're in Ireland], that despite the ban globally, there was delay by our gov here and it remained on the shelves for months . It was removed globally in Nov 61, not off the market here until Jan 62. Well done, Op, on your reaearch x

Darragon · Yesterday 12:25

Holy fuck I’ve just looked this up on the back of this thread as my grandma also had this drug when pg with my dm after a mc. We wondered if there was a genetic component to breast cancer as my mum and dgm had it, but I tested negative for the BRCAs. From what I read, they’re only now studying the grandchildren/great grandchildren so no idea if this will affect me/my kids. My mum died of BC. Apparently there’s also some evidence of psychiatric/developmental disorders in the children who were in utero when the drug was given.

Ratherhaveacupofteaandabiscuit · Yesterday 16:27

Darragon · Yesterday 12:25

Holy fuck I’ve just looked this up on the back of this thread as my grandma also had this drug when pg with my dm after a mc. We wondered if there was a genetic component to breast cancer as my mum and dgm had it, but I tested negative for the BRCAs. From what I read, they’re only now studying the grandchildren/great grandchildren so no idea if this will affect me/my kids. My mum died of BC. Apparently there’s also some evidence of psychiatric/developmental disorders in the children who were in utero when the drug was given.

I am really sorry to hear that.

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