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

Discussion
Comment receiving replies
@cjdavison

I am a DES daughter as well. I am surprised, but grateful to connect with others who are DES daughters or even just aware of DES. I have never met anyone else who knew that their mother took the drug during pregnancy. In my case, it resulted in an extremely tipped cervix which made it more difficult during Pap smears. I also experienced infertility (but was blessed through adoption!). In 2020, I was diagnosed with Stage IVb endometrial carcinoma. My only sign of something wrong was a severe pain in the very low part of my right abdomen that came and went for several months. I had NO bleeding, which is typically one of the first signs of endometrial cancer. It was discovered that my cervix was completely closed, hence the reason for no bleeding. I had a complete hysterectomy. The cancer had metastasized to several places. I had six months of chemo. Everything was stable for about six months, then it started growing again. I then started immunotherapy (Keytruda), which I have been receiving for about eight months. So, for now, I am trying to learn how to live with cancer which is what led me to this online site. I live in a small town and there are not any group resources nearby. If anyone can point me to an online group for those living with stage IV cancer, I would appreciate it. Thanks in advance.

Jump to this post


Replies to "I am a DES daughter as well. I am surprised, but grateful to connect with others..."

Inspire.com is an online patient website, with different communities for different issues. There is a community for uterine cancer, but I don't know how often people post.
There's another resource that isn't exactly on target, but could still be helpful. There's a site, uniteforher.org, which provides resources for patients diagnosed with breast or ovarian cancer within the last 18 months. But they have some resources that are available to everyone, such as cooking classes by dieticians online that emphasize a shift to plant-based eating. You could check it out.

@cjdavison, I invite you to join these discussion groups here to connect with other living with stage 4 advanced cancer:
- Anyone living with metastatic endometrial Cancer? What treatments? https://connect.mayoclinic.org/discussion/anyone-living-with-metastatic-endometrial-cancer/
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/