Not just Endometriosis but also DES

I’m showing my age now.  Between the years of 1950 and 1975 in the UK, women who had had miscarriages were prescribed diethylstilboestrol (DES).  DES is a synthetic oestrogen.  Unfortunately it had several side effects that were unknown or ignored at the time.  Those of us who have heard of DES sometimes refer to it as the “hidden thalidomide”.

The side effects include an increased risk of breast cancer in the mothers (the women taking the drug).  The resultant children have a higher risk of fertility problems, pregnancy complications, an increased risk of testicular cancer for the baby boys and an increased risk of vaginal cancer (CCAC) for the baby girls.

The sad fact is that the increased risk for clear cell adenocarcinoma (CCAC) was discovered in 1971 but the drug continued to be prescribed for another four years in the UK.

Mom has endometriosis.  Her symptoms weren’t as severe as mine.  Her endometriosis was discovered during her hysterectomy – she was in her 50s.  I think I’m right in saying that her hysterectomy has helped the few symptoms she had.  (This isn’t the case for every woman with Endo!  Bearing this in mind, I’m not begging for my hysterectomy just yet.)  For the record, she had her hysterectomy when doctors suspected she had cancer – it was the only time I’ve thought “Thank God it’s only Endometriosis!”

Bearing in mind endometriosis is a life-long problem for a woman, I suspect Mom’s endometriosis was the reason for the miscarriages she suffered before I came along.  Instead of looking for endometriosis the medical professionals in 1970/71 gave Mom DES to prevent another miscarriage.  I was the result.

I remember when Mom told me about her exposure to DES – she was terrified that she may have inadvertently hurt me.  My first reaction was “Well, if you needed the DES, then I’m grateful you took it!”  Now I’m angry that those idiots in white coats caused my mom distress.  I’m also angry at them for thinking that they’re above any ramifications that arise from their tinkering with women’s bodies!  How bloody dare you prescribe a drug to a pregnant woman without knowing the long-term risks!  Did you take the Hippocratic Oath?  How could you think that you were “doing no harm” if you didn’t know the risks?!?

If you have questions – check out the DES Action UK website at