DES (Diethylstilbestrol) Info

DES (Diethylstilbestrol) Info We welcome everyone from the DES community -- Mothers, Daughters, Sons, 3rd Generation and all exposed! In some clinics, it was given to every pregnant patient.

DES Info Association:

The DES tragedy of in-utero exposure and its devastating effects on multiple generations must not be forgotten. The medical community need education about the sequela of DES Exposure. (1) know how to screen the DES exposed, (2) Know the continueing long term effects of DES exposure, and (3) Provide prompt care when DES Exposed patients develop complications.

** What is DES (diethylstilbestrol)? **

DES (diethylstilbestrol), is a teratogenic and carcinogenic synthetic estrogen (Endocrine Disruptor) , is the world’s first major drug disaster. It was prescribed to millions of pregnant women for decades: from 1938 into the 1970s in the United States; and until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World (Currently in Kenya). The currently proven effects of exposure include a rare vaginal cancer in DES Daughters; greater risk for breast cancer in DES Mothers; possible risk for testicular cancer in DES Sons, along with transgender and reproductive malformations; abnormal reproductive organs; infertility; high-risk pregnancies; Skeletal issues and an increased risk for breast cancer in DES Daughters. There are a number of other suspected effects, including auto-immune disorders, but many of these effects are still awaiting further research. For decades, Big Pharma claimed DES prevented miscarriages and problem pregnancies. It was sometimes given as an injection, but primarily it was prescribed in pill form. Never patented, DES was marketed under 200 different names, although the majority of the drug was actually produced by Eli Lilly. DES was sometimes even included in prescription prenatal vitamins. As early as 1938, studies showed that DES promoted cancer in lab animals. But at that time, people thought animal studies only provided a hint of what could happen in humans. Also, no one knew that drugs could cross the placenta and affect a baby in utero. (Note there was a 1941 mouse study that showed mice with absent or deformed fallopian tubes. The warning signs were there for humans.) In 1941, the original clinical uses for DES were to treat gonorrheal vaginitis, senile vaginitis, menopausal symptoms and to suppress lactation. Between 1941 and 1947, it was used for pregnancy without FDA approval. No controlled studies were ever conducted by the drug companies to determine the effectiveness or safety of DES for use during pregnancy, even after some scientists started questioning its efficacy in the 1950s. As early as 1953, research revealed that DES did not work (The Dieckmann Study) – that DES actually brought about higher rates of premature birth and infant mortality – yet DES continued to be prescribed to pregnant women for decades. This is because pharmaceutical companies continued to heavily promote DES use to doctors. The drug was a top moneymaker for Big Pharma. In the late 1960s, there was an unprecedented appearance of rare cancer in young women. Clear cell cancer (CCA) – a rare cancer of the vagina – was diagnosed in an age group never before found to develop it. (Normally elderly women developed CCA.) There were eight such cases at Massachusetts General Hospital in Boston alone. One of the mothers raised the question of whether her daughter's cancer might be connected to DES exposure in utero. Doctors discovered the DES link in 1971 and published their findings in the April 1971 issue of New England Journal of Medicine. News of the cancer cases made national headlines. However, the FDA did not act on this information until public pressure, including Congressional Hearings, forced the FDA to issue a warning about DES in November 1971. The drug was not banned for human use. DES was contraindicated for pregnancy by the FDA in 1972. It was not until September 2000 that the FDA finally withdrew its approval of DES for humans. Researchers are now investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren (Third Generation). As study results come in, there is growing evidence that this group has been adversely impacted by a drug prescribed to their grandmothers. To this day, not one drug company has ever apologized or accepted responsibility for the DES tragedy. Nevertheless, they have paid millions in out-of-court settlements and verdicts to DES Daughters and Sons who suffered injuries from their exposure. Please join us in our mission to continue to provide information to the DES exposed on DES information and other health related information along with pushing for more physician education to know how to care for the DES exposed. Also, we are continuing to push for more research! Our moto is "Knowledge is Power" DES Info Association is a free resource for Diethylstilbestrol Information and Research

“DISCLAIMER: THIS SITE DOES NOT PROVIDE MEDICAL ADVICE. The information on this site, including but not limited to text, graphics, images and other material, is for informational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. If you have any questions about how the information contained on this website may relate to you, you should seek the advice of a physician or other qualified health care professional.”

DES Info: Hsp90 is a chaperone for over 100 'client proteins' in the cell.  Hsp90 maintains several nuclear hormone rece...
02/23/2026

DES Info: Hsp90 is a chaperone for over 100 'client proteins' in the cell. Hsp90 maintains several nuclear hormone receptors important info for the DES Exposed…

Ruden DM, Xiao L, Garfinkel MD, Lu X. “Hsp90 and environmental impacts on epigenetic states: a model for the trans-generational effects of diethylstibesterol on uterine development and cancer.” Hum Mol Genet. 2005 Apr 15;14 Spec No 1:R149-55. doi: 10.1093/hmg/ddi103. PMID: 15809267.

This review concludes with the following:
“In this review, we propose that trans-generational epigenetic phenomena involving Hsp90 and DES are related and that chromatin-mediated WNT signaling modifications are required. This model suggests that inhibitors of Hsp90, WNT signaling and chromatin-remodeling enzymes might function as anticancer agents by interfering with epigenetic reprogramming and canalization in cancer stem cells.”

https://pubmed.ncbi.nlm.nih.gov/15809267/

For further information, please review the article online or contact DES Info Association at DESInfo411@gmail.com. Please include the title of the article.



DESInfo411@gmail.com

DES Info: Work is underway for the Second Edition of "Voices of the DES Exposed Speaking Out" Thank you for your stories...
02/19/2026

DES Info: Work is underway for the Second Edition of "Voices of the DES Exposed Speaking Out" Thank you for your storiesand not too late to submit yours. We are also looking for pictures of you to include. Please share if you want your picture included.

DES Info: We are sharing with you a Multigenerational National Cohort StudyGaspari L, Soyer-Gobillard MO, Rincheval N, P...
02/19/2026

DES Info: We are sharing with you a Multigenerational National Cohort Study

Gaspari L, Soyer-Gobillard MO, Rincheval N, Paris F, Kalfa N, Hamamah S, Sultan C. “Birth Outcomes in DES Children and Grandchildren: A Multigenerational National Cohort Study on Informative Families.” Int J Environ Res Public Health. 2023 Jan 31;20(3):2542. doi: 10.3390/ijerph20032542. PMID: 36767903; PMCID: PMC9915936.

This study concludes: “Data shows the DES impact on birthweight (BW) and preterm birth (PTB) rate in DES and post-DES children and grandchildren. In particular, mean BW was higher in DES than pre-DES full-term neonates. This result may be in opposition to previous data from American cohorts, which reported lower BW in DES children, but is consistent with animal study.”

“Our retrospective observational study highlights a multigenerational and likely transgenerational effect of this EDC in humans.”

For further information, please review the article online or contact DES Info Association at DESInfo411@gmail.com. Please include the title of the article.



DESInfo411@gmail.com

DES Info: An excerpt from the DES Timeline.■ “Taking Healthcare by Storm: DES Info was interviewed by Dr. Jean Storm on ...
02/18/2026

DES Info: An excerpt from the DES Timeline.

■ “Taking Healthcare by Storm: DES Info was interviewed by Dr. Jean Storm on Diethylstilbestrol Exposure, its related health effects and what is needed to care for the DES exposed.
“In this episode of Taking Healthcare by Storm, Quality Insights Medical Director Dr. Jean Storm speaks with Karen Fernandes, RN, CPHQ, CPAA, a nationally respected healthcare leader and advocate with decades of experience in nursing, quality management, and patient safety.

Karen discusses her personal connection to the far-reaching impact of the synthetic estrogen diethylstilbestrol (DES), prescribed from the 1940s to the 1970s. She highlights its multi-generational health effects and stresses the need for increased awareness, research funding, and provider education.”
https://www.qualityinsights.org/taking-healthcare-by-storm

https://qualityinsights.buzzsprout.com/1758119/episodes/17829353-taking-healthcare-by-storm-industry-insights-with-karen-fernandes

Keep up to date with this podcast about healthcare industry insights that delves into the captivating intersection of innovation, science, compassion, and care.

DES Info: We are sharing this important article on the HOX Genes, these genes are important and potentially altered in t...
02/14/2026

DES Info: We are sharing this important article on the HOX Genes, these genes are important and potentially altered in the DES Exposed.

Hongling Du and Hugh S. Taylor “The Role of Hox Genes in Female Reproductive Tract Development, Adult Function, and Fertility” Cold Spring Harb Perspect Med 2016;6:a023002

This article states: Diethylstilbestrol (DES) and other endocrine disruptors cause Mullerian defects by changing HOX gene expression. HOX genes are also essential regulators of adult endometrial development. Regulated HOXA10 and HOXA11 expression is necessary for endometrial receptivity; decreased HOXA10 or HOXA11 expression leads to decreased implantation rates. Alternation of HOXA10 and HOXA11 expression has been identified as a mechanism of the decreased implantation associated with endometriosis, polycystic ovarian syndrome, leiomyoma, polyps, adenomyosis, and hydrosalpinx. Alteration of HOX gene expression causes both uterine developmental abnormalities and impaired adult endometrial development that prevent implantation and lead to female infertility.

https://pubmed.ncbi.nlm.nih.gov/26552702/

For further information, please review the article online or contact DES Info Association at DESInfo411@gmail.com. Please include the title of the article.



DESInfo411@gmail.com

HOX genes convey positional identity that leads to the proper partitioning and adult identity of the female reproductive track. Abnormalities in reproductive tract development can be caused by HOX gene mutations or altered HOX gene expression. Diethylstilbestrol (DES) and other endocrine disruptors....

DES Info: Preparing for DES Awareness Week April 19-25, 2026New need your help and input:  Last  year, DES Info Associat...
02/09/2026

DES Info: Preparing for DES Awareness Week April 19-25, 2026

New need your help and input: Last year, DES Info Association collected stories from many DES Exposed people, and we published “VOICES OF THE DES-EXPOSED SPEAKING OUT.” This was published during DES Awareness Week and was very well received. One of the DES researchers stated that it was “powerful”! We have just started the Second Edition for 2026.

Here is an excerpt:
• Born in 1960: Cyst on Ovaries, Irregular heavy periods with clotting, Autoimmune Disease, Migraines, Tipped T-shaped Uterus, Trouble getting pregnant, Miscarriages, Depression, Endometriosis, Complicated Pregnancy with Incompetent Cervix.
• Born in 1951: Tough time getting pregnant - Cervix was abnormally tight, Multiple Miscarriages and stillbirth, Premature delivery at 28 weeks. Our precious daughter lived 27 hours. It was devastating. DES Son/Brother: Testicular Cancer.
• Born in 1958: Tilted Uterus, 2 Pregnancies, Broken Bones due to Brittle Bones, Always catch whatever virus is going around. Weak Immune System.
• Born in 1950: DES Son and Transgender.
• Born in 1956: DES Son: Psychological and social dysfunctions, High Functioning Asperger Syndrome, ADHD, Androgynous appearance and presentation, Reoccurrence of gender dysphoria, Severe Depression episode with Suicidal Ideation, Anxiety Disorders, Identifies as non-binary gender. Brain scan showed gender dimorphic structures BNSTc an INAH-3 were Smaller than usual in males, Normal ge***alia at birth; P***s exhibits Peyronie’s Disease.

If you would like your story to be added, this year we are asking you to email us your story DESInfo411@gmail.com or enter your story into this email.

We look forward to hearing from you. We are stronger together.



DESInfo411@gmail.com

DES Info: We are sharing this article on Hypospadias which is being seen in DES GrandsonsKaefer, M., Rink, R., Misseri, ...
02/09/2026

DES Info: We are sharing this article on Hypospadias which is being seen in DES Grandsons

Kaefer, M., Rink, R., Misseri, R. et al. “Role of epigenetics in the etiology of hypospadias through pe**le fo****in DNA methylation alterations.” Sci Rep 13, 555 (2023). https://doi.org/10.1038/s41598-023-27763-5

This article shares the following: “Observations demonstrate altered DNA methylation sites in pe**le fo****in is a component of hypospadias etiology. In addition, a potential role of environmental epigenetics and epigenetic inheritance in hypospadias disease etiology is suggested.”

“The current study demonstrates a role for epigenetics in hypospadias etiology. Direct environmental exposures, such as DES, have been shown to alter epigenetics and critical gene expression events to generate the etiology of disease, both in the individual exposed and in subsequent generations. “

DES Info: This is a very detailed report to review and we have only included some excerpts. It was surprising to see the DNA genes included.

For further information, please review the article online or contact DES Info Association at DESInfo411@gmail.com. Please include the title of the article.



DESInfo411@gmail.com

Abnormal pe**le fo****in development in hypospadias is the most frequent ge***al malformation in male children, which has increased dramatically in recent decades. A number of environmental factors have been shown to be associated with hypospadias development. The current study investigated the role...

DES Info: We are posting this article which focuses DES’s effects on lumbar and femoral bones.Rowas, S.A., Haddada, R., ...
02/04/2026

DES Info: We are posting this article which focuses DES’s effects on lumbar and femoral bones.

Rowas, S.A., Haddada, R., Gawri, R. et al. “Effect of in utero exposure to diethylstilbestrol on lumbar and femoral bone, articular cartilage, and the intervertebral disc in male and female adult mice progeny with and without swimming exercise” . Arthritis Res Ther 14, R17 (2012). https://doi.org/10.1186/ar3696

The study concludes: “DES significantly affected the musculoskeletal system of adult mice. Results suggest that environmental estrogen contaminants can have a detrimental effect on the developmental lumbar bone growth and mineralization in mice. Further studies measuring the impact of environmental estrogen mimics, such as bisphenol A, are then warranted.”

For further information, please review the article online or contact DES Info Association at DESInfo411@gmail.com. Please include the title of the article.



DESInfo411@gmail.com

Introduction Developmental exposure to estrogens has been shown to affect the musculoskeletal system. Furthermore, recent studies have shown that environmental exposure to estrogen-like compounds is much higher than originally anticipated. The aim of this study was to determine the effects of diethy...

DES Info: We are bringing you this journal article on Clear Cell Adenocarcinoma of the O***y related to DES Exposure.Con...
01/31/2026

DES Info: We are bringing you this journal article on Clear Cell Adenocarcinoma of the O***y related to DES Exposure.

Constantin A. Dasanu, MD, PhD; Thomas J. Herzog, MD “Clear Cell Adenocarcinoma of the O***y Associated With In Utero Diethylstilbestrol Exposure: Case Report and Clinical Overview” -Medscape - Jan 07, 2009”

This article concludes with the following: “Our case of probable DES-induced transplacental carcinogenesis more than 4 four decades after exposure reinforces the need for continued routine gynecologic examinations in prenatally exposed individuals. This is why the recommendation for the DES Exposed remains with annual screening.”

For further information, please review the article online or contact DES Info Association at DESInfo411@gmail.com. Please include the title of the article.



DESInfo411@gmail.com

DES Info:  We are sharing with you an article from French researchers on late cervical and va**nal clear cell adenocarci...
01/28/2026

DES Info: We are sharing with you an article from French researchers on late cervical and va**nal clear cell adenocarcinoma.

Michel Tournaire, Jean Gondry, Léa Mauny, Emmanuel Devouche, Philippe Morice:
“Late cervical and va**nal clear cell adenocarcinoma in women exposed in utero to diethylstilbestrol: Evaluation and screening”
Journal of Gynecology Obstetrics and Human Reproduction,
Volume 52, Issue 8, 2023, 102630,
https://doi.org/10.1016/j.jogoh.2023.102630.
(https://www.sciencedirect.com/science/article/pii/S2468784723000971)

This research study concludes: For the present, we propose specific screening for women exposed to DES in utero in terms of: 1) methods: association of cytology and hrHPV testing, with cervical and va**nal sampling, 2) timing : annual, or without exceeding a three-year interval, continuing after 65 years of age and after hysterectomy.”

For further information, please review the article online or contact DES Info Association at DESInfo411@gmail.com. Please include the title of the article.



DESInfo411@gmail.com

DES Info: Share this new DES code with all of your doctorsZ91.B
01/27/2026

DES Info: Share this new DES code with all of your doctors
Z91.B

DES Info: New DES ICD-10 code approved and in place! Our hard work paid off!ICD-10-CM Codes › Z00-Z99 › Z77-Z99 › Z91- ›...
01/26/2026

DES Info: New DES ICD-10 code approved and in place! Our hard work paid off!

ICD-10-CM Codes › Z00-Z99 › Z77-Z99 › Z91- › 2026 ICD-10-CM Diagnosis Code Z91.B

2026 ICD-10-CM Diagnosis Code Z91.B
Personal risk factor of exposure to DES

2026 - New Code Billable/Specific Code Female Dx POA Exempt
Z91.B is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes.

ICD-10-CM Z91.B is a new 2026 ICD-10-CM code that became effective on October 1, 2025.

This is the American ICD-10-CM version of Z91.B - other international versions of ICD-10 Z91.B may differ.
ICD-10-CM Coding Rules
Z91.B is

Applicable To
DES daughter or son
• Personal risk factor of exposure to DES
• Personal risk factor of exposure to DES in utero
• Second generation DES exposure

Code Also, associated conditions, such as:conditions classifiable to C50.-
osteoporosis (M80.-) premature menopause (E28.31-)
The following code(s) above Z91.B contain annotation back-references that may be applicable to Z91.B:
Z00-Z99 Factors influencing health status and contact with health services
Z77-Z99 Persons with potential health hazards related to family and personal history and certain conditions influencing health status
Z91 Personal risk factors, not elsewhere classified
Present On Admission
Z91.B is considered exempt from POA reporting.

ICD-10-CM Z91.B is grouped within Diagnostic Related Group(s) (MS-DRG v43.0):
951 Other factors influencing health status

Code History
2026 (effective 10/1/2025): New code
Diagnosis Index entries containing back-references to Z91.B:
DES child Z91.B (daughter) (son)
second generation Z91.B
Exposure (to) T75.89 - see also Contact, with risk factor, personal, to diethylstilbestrol Z91.B (DES) (in utero)

Reimbursement claims with a date of service on or after October 1, 2015 require the use of ICD-10-CM codes.

https://www.icd10data.com/ICD10CM/Codes/Z00-Z99/Z77-Z99/Z91-/Z91.B

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https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/des-fact-sheet,

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