My DES Daughter Journey – Doctors

You’ve been exposed to DES in-utero, so what?

When I miscarried in 2001, I rushed to my general practioner (GP) to tell him that I had been exposed to diethylstilbestrol before birth in my mum’s womb. She had been prescribed the Distilbène® throughout her pregnancy. My GP knew very little about prenatal DES exposure and its side effects. I contacted DES Action UK who kindly sent him their leaflets and newsletter. They also provided him with the details of four UK consultants (yes, only four!) who have taken a close interest in DES drugs.

Below are a few quotes from letters of doctors and consultants I saw after I had a hysterosalpingogram in France in 2001.

January 2002:
Dr B., my GP, in a letter to Dr W. says: “This French lady has been informed by her French gynaecologist that her uterine cavity is too small and irregular. Also, her fallopian tubes did not show on a hysterosalpingograph (…) she was told she requires a hysteroscopy and laparoscopy.

February 2002:
Reply from Dr W.’s Appointments Office: “Mr W. has a waiting list of approximately 20 weeks whilst we are making every effort to shorten his list we are not at this time able to allocate you a firm appointment date”.

Response dated February 2002 from Dr M. to a letter I sent him to ask for his advice in January of the same year: “I read with interest your letter and the details of your investigations in France. This certainly raises the possibility that you have an abnormally shaped womb. Such abnormalities do occur sporadically but there is an increased risk in someone who has been exposed to DES (…) This condition is in no way dangerous to your health. (…) It is possible that this abnormality contributed to your recent miscarriage but it is equally possible that the problem was related to some developmental disturbance in the pregnancy itself which is a far more common cause of miscarriage. (…) Before advising any treatment for this suspected abnormality I think we would need much more concrete evidence that it is contributing to miscarriage”.

Dr M. continues: “There are two ways to approach this, either we could be pragmatic and advise you to try for another pregnancy (…) alternatively, if you have further miscarriage we could investigate further (…) You are right that it is highly unlikely that you will receive treatment on the NHS for many months”.

March 2002:
So I applied to the Department of Health for an E112 for investigations to be carried out in France. My application was denied: “With regret, I am unable to approve your application. Approval for an E112 is normally given only in situations where, for clinical reasons, the local health service provider is unable to provide the patient care required (…) I was unable to established that although DES may perhaps be more commonly investigated in France, it is entirely appropriate for the procedures and care required for your case to be provided by our local health services”.

So basically, I had to wait for an appointment with Dr W., try for another baby and see what happens!!!! You’ve been exposed to DES, so what? Doctors needed more evidence that it was contributing to miscarriage. How could I try again for a baby with such a worrying result from the hysterosalpingogram? I arranged for a hysteroscopy and laparoscopy to be carried out later (September 2002) in France.

July 2002:
Dr W.’s Appointments Office: “Further to our phone conversation today, I am writing to confirm the private appointment for you to see Mr W. on Thursday 4th July at the Bristol Nuffield Hospital. The cost of your appointment will be £160”.

I was pleased to see you for your consultation at the Bristol Nuffield Hospital last week (…) I would suggest you telephone the fertility clinic at Southmead in the near future to arrange a follow up appointment with me after you will have had your laparoscopy and hysteroscopy operation with Professor Frydman.” comments Mr W.

In a letter Dr W. wrote to my GP: “Mrs A. was understandably concerned about the result of her hysterosalpingogram (HSG) and the suggestion that she might have bilateral tubal blockage. She was also concerned about the possible risks of a further miscarriage as a result of her DES exposure in-utero (…) I am not convinced that the HSG show a true tubal occlusion (…) The cavity of the uterus appears normal, apart from being rather excessively distented in the later stages of her HSG examination (…) Although there is no doubt that in-utero exposure to DES increases risk of miscarriage and the risk of premature delivery, the vast majority of women in this situation do have successful pregnancies. The risks are higher if there is any structural abnormality of the shape of the uterine cavity and this does not seem to be the case from Mrs A.’s hysterosalpingogram”.

September 2002:
A hysteroscopy and laparoscopy performed by Pr. Frydman in France confirmed a uterine malformation, a T-shape uterus with a septate which was removed by surgery during the examination.

October 2002:
Dr W. comments: “I understand that her laparoscopy showed a normal pelvis with patent fallopian tubes. Her hysteroscopy demonstrated a 3cm-long septum which has been partially resected with a Versapoint”.

I returned to France to see Dr T. for a follow-up appointment. She confirmed: “The hysteroscopy and laparoscopy show a typical DES uterus. However the uterine cavity is acceptable thanks to the fact that the septum has been resected.

Dr T. explained that even though the uterine cavity was large enough to envisage a pregnancy there was a high risk of premature labour.

September 2003:
2 years after I miscarried, I gave birth to a beautiful baby girl, thanks to Pr. Frydman.

7 Replies to “My DES Daughter Journey – Doctors”

  1. Do you have the names of the Doctors in the UK who are interested in DES? My GP is having trouble finding them.

    David

  2. Dealing with miscarriage in normal circumstances is hard enough; I can only imagine how much more devastating the knowledge of DES problems would make it. I hope that advocacy makes more doctors aware of the issues.
    Lynn

  3. It strikes me from researching the last day that is DES Daughters have very little support or representation from the medical profession in the UK and that there is more awareness and empathy for our circumstances abroad in places like the US, France, Australia etc?

  4. I have no idea where to go to get medical help/checks having just found out the health implications of the exposure I had. Can you recommend any UK clinics or Doctors that help DES women? I don’t know my GP as I moved last year and due COVID my local surgery don’t allow you to see any GP’s face to face. They will only call you if they deem it necessary (based on what the receptionist passes into them!) so I have no idea of where I’d start trying to bring up a subject like DES in that situation.

    Please help! I’ve had years of miscarriages and health issues that I now realise are likely due to DES exposure related problems. It’s been really hard and I could do with some support and guidance.

    1. The contacts we had been given for the UK are on our 2nd blog ; see Medical Contacts in the UK for the DES Exposed.

      Please note that I had been given this in 2011…
      So far, no UK DES Daughter or Son has shared with me some tips regarding which UK doctor is really/fully DES aware and which UK medical facility is best for the DES exposed. So I’m afraid that’s all I got to share.

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