Has anyone been exposed to diethylstilbestrol (D.E.S) in utero?

My cousin is a DES daughter. She had stage 4 endometrial cancer at age 50. She nearly hemorrhaged to death because doctors insisted her heavy non-stop bleeding was premenopausal. She had a complete hysterectomy and they found nodes in her stomach cavity that were affected. She went through chemo. She had to end it a little early due to complications. But she has had no reoccurrences and its been over 10 years. The fatigue took years to recover from. But she is doing very well.

@dgulovsen The DES exposed are at high risk for reproductive cancers. I am sorry to hear about your cousin.

The DES Exposed need annual mammograms and GYM exams.

@cahabagirl

You should absolutely continue to have regular PAP smears.

@kmfdallas

Thanks for this information. I had one gyno who was so rude - her comment to me when I mentioned my DES exposure was, "Oh I'm seeing fewer of you every year."

I reported her to the Medical Board. Never accept that kind of behavior from any provider!

@ursulaipato Glad you reported this, Doctor. Doctors need education on the DES Exposed

I am a DES daughter based in the UK, born in 1958. I have had multiple issues, cervical polyps, stenosis and adenosis. Infertility, finally conceived with GIFT, Prem birth at 33 weeks by emergency C section. My mother died from DES related breast cancer. Unlike the USA we don't get monitored! I am currently trying to persuade my GP this needs to continue. I also have a rare oestrogen driven lung, lymphatic & kidney disease, known as lymphangioleiomyomatosis (LAM) categorized as cancer by WHO but not by British NHS. I have always felt the 2 conditions are connected and would love to hear from anyone else who is thus affected. Thank you

@snowyowl I have not seen these 2 conditions reported by the NIH in the US. DES Info Association has more information.

@kmfdallas
Thank you. I am already aware of the DES Info Association and have been in contact with them. You probably have not heard of LAM because of its rarity - estimated to be between 5 -21 in a million women. However on the USA LAM patients Facebook I have found 5 other ladies thus affected, 3 including myself who have proof of their DES exposure & 3 who think they were DES exposed. I have not found any one else in the 400 or so women with LAM in the UK. However my pulmonary physician is taking my thoughts seriously, it would be good to discover if any other women have the 2 conditions. We are trying in the UK to get Government recognition for DES and this might help.

I was exposed in 1955 in utero. I had pre cancer cells taken from my cervix at 24 years old. I had breast cancer at 51 years old. I have osteoporosis at 70 . I am fit, go to the gym, walk, play golf. Anyone else have this?

Hello @pattibranigan, and welcome to Mayo Clinic Connect. I appreciate you sharing your experience as you were exposed to DES in utero. While I've never had breast or gynecological cancers, I have had a rare type of digestive tract cancer as well as hypoparathyroidism, osteoporosis, and other relatively rare disorders.

I am glad to hear that you are active and fit. What type of follow-up exams do you have related to the previous cancer diagnoses? If you have had children, do any of them have health issues that might be related to the DES you were exposed to?