1The Presence of Gender Dysphoria, Transsexualism, and Disorders of Sex
Differentiation
in Males Prenatally Exposed to Diethylstilbestrol: Initial Evidence from a 5Year Study
By Scott P. Kerlin, Ph.D., DES Sons International Network
Kingston, Ontario Canada
Contact: skerlin2000@yahoo.com
Paper Presented at 6th Annual E-Hormone Conference, New Orleans, October 2730, 2004
Introduction and Background
During the 1970s and 1980s an increasing amount of public and scientific attention
was paid to the health and medical problems of women and men whose mothers and
grandmothers took diethylstilbestrol (DES) for prevention of miscarriage. A
potent estrogenic chemical, DES was first developed in 1938 and initially became
available in the U.S. for treating a range of gynecologic conditions in 1941 (Apfel
and Fisher, 1984). A few years later its approval by the FDA was broadened to
include treatment of pregnant women for the purpose of preventing miscarriages
(spontaneous abortions). Though its efficacy had long been doubted by some in the
medical community (Bambigboye and Morris, 2003; Dieckmann, 1953; Edelman,
1986), DES remained popular until publication of research in the early 1970s
identifying an apparent association between prenatal exposure to DES and a rare
form of vaginal cancer in females (commonly called “DES daughters”) whose
mothers used DES (Giusti, Iwamato, and Hatch, 1995; Heinonen, 1973; Herbst and
Bern, 1981).
It is estimated that as many as five to ten million Americans received DES during
pregnancy or were exposed to the drug in utero between the late 1940s and early
1970s (Giusti, Iwamoto, and Hatch, 1995). The numbers of male offspring exposed
in utero to DES (“DES sons”) have been estimated at between one and three million
in the U.S. (Laitman, Jonler, and Messing, 1997) and similar estimates exist for the
numbers of American females exposed in utero (Edelman, 1986). Hundreds of
thousands of DES sons and daughters were also born in Canada, Europe and
Australia during a similar period.
Compared with the history of research on the range of health effects of DES
daughters, there are relatively few published medical research studies conducted
with DES sons. And yet, the finding that prenatal DES exposure also led to
detrimental effects for a number of exposed males has existed since the 1970s
(Andonian and Kessler, 1979; Bibbo et al., 1977; Gill et al., 1979; Gill, et al., 1988;
Laitman et al., 1997). These effects include a variety of structural abnormalities
of the reproductive system such as epididymal (benign) cysts, hypoplastic testes
or undescended testes (chryptorchidism), microphallus or underdeveloped penis
which may be associated with an intersex condition, and hypospadias (opening of
the penis is on the underside rather than at the end). Although DES exposure has
been suspected as a possible source of male infertility and testicular cancer
(Giusti, Iwamato, and Hatch, 1995, it is still uncertain whether prenatal DES
exposure has led to increased risk of infertility (Wilcox et al., 1995) or increased
rates of testicular cancer as well as other types of cancer in males (Strohsnitter,
et al. 2001).
While published primary studies of other health issues among males with prenatal
exposure to DES are not numerous, there is some available research investigating
possible links between DES exposure and increased potential for major depressive
disorders and other psychiatric effects (Katz, et al., 1987; Meyer-Bahlburg and
Ehrhardt, 1986; 1987; Pillard et al., 1993; Vessey et al., 1983). More recent
discussion of possible psychiatric effects of prenatal DES exposure, including
gender-related effects, has been forwarded by Verdoux (2000; 2002) and Boog
(2004). Research investigating possible psychosexual impact of DES exposure in
human males (feminization and demasculinization) has been published since the
1970s (Dorner, 1985; Green, 1978; Kester, Green, Finch, and Williams, 1980;
Reinisch and Sanders, 1984; Reinisch, Ziemba-Davis, and Sanders, 1991; Yalom,
Green, and Fisk, 1973), while research on endocrine disruptors which includes
discussion of DES as a possible link in a variety of sexual differentiation disorders
in humans has been produced more recently (Boisen, et al., 2001; Gupta, 2000;
McLachlan, 2001; McLachlan et al., 2001; Sharpe, 2001; 2004; Skakkeb k, Meyts,
and Main, 2001; Sultan et al, 2001; Swaab et al., 2002; Toppari and Skakkeb k,
1998).
Methodology
This study was initially conceptualized as a one-year (1999-2000) virtual (online)
focus group of DES sons from around the world, with the basic purpose being
discussion and documentation of the range and history of reported adverse health
effects among DES sons. Virtual focus groups are online discussion communities or
support groups which, when effectively designed and moderated, enable
investigation of a particular issue (for example, adverse health effects) from the
perspective of the individuals who are most directly affected (Murray, 1997). The
tools and features of online forums like the DES Sons International Network
enable a collective engagement of issues raised by participants and fresh insights
for participants and researchers.
The DES Sons International Network was developed with a number of primary
goals in mind: to bring together an expanding range of individuals born as males
who were exposed prenatally to DES, to expand awareness of the range of
existing research about DES and male health, and to explore other issues
affecting the physical, mental, and reproductive health of DES sons. Most
important, it was meant to further investigate still unresolved questions regarding
DES sons, consistent with recommendations issued by the National Cancer
Institute and National Institutes of Health (National Cancer Institute, 1999).
Upon creation of the DES Sons Online Network (now the DES Sons International
Network) in 1999, announcements about the online network were made on a variety
of online DES and reproductive health information networks. Subscription
requests were carefully screened for (1) evidence or confirmation of the likelihood
of prenatal DES exposure; (2) confirmation of birth between the late-1940s and
early 1970s which was the critical “window” during which DES was administered as
an anti-miscarriage drug; (3) confirmation that the subscriber was born as a male
and thus qualified to be considered a “DES Son”. Although a few other individuals
whose exposure status was unknown were permitted to join the Network they are
not included in the statistical analysis that is covered in this report.
Data-gathering within this study has used the principles of grounded theory in
qualitative analysis which involves a process of continuous expansion and
refinement of issues in online discussions, combined with ethical principles of
precaution around network members’ identities and privacy. As individuals joined
the DES Sons International Network, they provided (privately to the researcher
and on occasion in the support group discussions) an overview of health and medical
histories as well as other questions or issues surrounding their DES exposure.
Primary research on DES sons' health issues included open-ended questions,
occasional surveys or polls of members, periodic online chats (conducted in “real
time”) to answer questions on particular health questions such as DES exposure
and infertility, and the sharing and posting of relevant published DES research
studies in order to generate discussion and further awareness. Summary results
from most of the available text-based data are being analyzed using sophisticated
qualitative data analysis software.
Within the first year of Network discussions, some members began to raise issues
with regard to sexuality, sexual orientation, and gender identity. Over subsequent
months, these issues became more substantial in list discussions, at times becoming
the dominant themes raised by members. The Network continued to attract
interest and new members after the first year and it was decided to continue the
Network indefinitely. By the summer of 2004, the DES Sons International
Network had more than 200 active subscribers.
As a result of significant attention to gender and sexual diversity issues among
some network members, a support group (DES Trans) for these members was
formed in January 2002. As of July 2004, more than 130 individuals had joined
DES Trans. This underscores the significance of gender identity and intersex
conditions as major concerns among a significant portion of persons who have been
exposed to DES.
Findings
This section presents an introduction to some of the key findings from research
conducted with the members of the DES Sons International Network between July
1999 and July 2004. A more comprehensive summary of the full scope of findings
will be completed in 2005.
APPENDIX A provides an overview of a January 2002 poll of members of the DES
Sons International Network when its total membership was just over 100.
Members were asked to indicate the one term pertaining to their gender or sexual
identity or sexual orientation that they felt most described how they self-defined
among their closest friends. What is significant among the findings of this poll is
that among the 63 network members who answered the question (approximately
70% of active network members), the largest number (23, or 36.5% of
respondents) identified as “transsexual” (pre- or post-op), while another 15%
identified as transgendered, and 13% identified as “intersex” or “androgynous.”
“Straight males” represented 17.5% of respondents (the second highest response
group), while 13% identified as bisexual or gay males.
APPENDIX B presents an overview of the range of issues raised by the
approximately 500 members of the DES Sons International Network during its
first five years. (Note re sample size: as of spring 2004, the number of individuals
with known or likely DES exposure who have joined the Network since 1999
reached 500 (base sample size = 500). Issues raised by Network members include:

Principal Reported Health Concerns of DES Sons
Based on results from a variety of assessments of individual DES sons in the
Network, the three health areas of greatest concern among Network members are
(a) hormonal/endocrine health issues; (b) gender identity and sexual health issues;
and (c) psychological/mental health issues including anxiety and depression.

Additional Reported Adverse Health Effects
Members identified a range of adverse health effects including autoimmune
disorders, infertility, reproductive tract abnormalities, ambiguous or
underdeveloped genitalia, epididymal cysts, testicular cancer, and erectile
dysfunction.

Significant Gender Dysphoria Prevalence
Somewhere between one-quarter and one-third of members of the DES Sons'
network since 1999 have indicated that gender dysphoria, transsexual outcomes,
and/or sexual health issues were among their top concerns.

Relatively High Prevalence of Transsexual, Transgender, and Intersex
More than 150 network members with “confirmed” or “strongly suspected” prenatal
DES exposure status indicated they are either transsexual (pre- or post-operative,
90 members), transgender (48 members), “gender dysphoric” (17 members), or
intersex (3 members).

Low Cancer Prevalence
Only a small number of DES sons contacting the network have reported
experiencing any type of cancer-related health problems (primarily testicular
cancer during younger years).
Discussion and Implications
During the first five years of research within the DES Sons International Network
some important accomplishments and discoveries have occurred. These will be more
thoroughly detailed when a subsequent edition of this paper is completed in 2005.
Accomplishments and a brief examination of the implications include the following:
Through the first five years of this study a base sample of 500 individuals with
confirmed or “suspected” DES exposure from a wide range of locations around the
world has been obtained.
Historically, research with DES sons has often entailed relatively low numbers of
individuals, making it difficult to extrapolate from one study to broader
populations of DES sons. The research in the DES Sons International Network,
while involving relatively low levels of researcher control over issues of geographic
location or dosage/timing of exposure, has enabled deeper exploration of issues of
common life experience and human development among DES sons. Grounded Theory
(Glaser and Strauss, 1967), as a rigorous method of qualitative inquiry in which
theory is developed inductively from a corpus of data, was used in this study to
enable issues to emerge that otherwise might be overlooked in study designs
involving greater levels of control.
Endocrine system disorders such as hypogonadotropic hypogonadism in DES
sons have been among the most common reported adverse health effects in this
research study.
Although the prevalence of endocrine system disorders among DES sons has not
been discussed in any of the existing published research on DES-exposed
populations, both the Endocrine Society and the American Association of Clinical
Endocrinologists (2002) have recognized prenatal DES exposure as a potential risk
factor for endocrine disorders including hypogonadism. Our research confirms that
this is an issue that needs further attention in future studies of DES sons.
Mental health and psychiatric issues (including depression and anxiety
disorders) are relatively significant among the population of DES sons participating
in this research.
Our findings support the efforts, most recently by Verdoux (2000, 2002), to
obtain better understanding about the risks and causes (if any exist) of
psychiatric disturbances among DES-exposed individuals. It is hopeful that future
research on human health effects of exposure to endocrine disrupting chemicals
(i.e. assessing neurotoxicity) will include psychiatric disturbances such as major
depression, anxiety disorders, eating disorders, and psychoses as potential
endpoints for analysis. Additional questions may be explored as to whether
psychiatric conditions such as increased depression and/or anxiety disorders in
DES sons have a foundation in primary endocrine system disorders.
Relative infrequency of reported cancer among the DES sons in this research is
consistent with most existing long-term studies demonstrating there is limited
cancer risk in males directly due to prenatal DES exposure.
While the rate of total cancer occurrence in the DES Sons International Network
could not be rigorously measured, numerous efforts have been made to generate
discussion about cancer risks and in particular, to encourage dialogue regarding
testicular cancer experiences. Approximately five members of the network
between the study years of 1999 and 2004 indicated some past or present
experience with testicular cancer. It appears that overall cancer outcomes among
network members have been low, a finding consistent with research by
Strohsnitter et al. in 2001.
One of the most significant findings from this study is the high prevalence of
individuals with confirmed or strongly suspected prenatal DES exposure who selfidentify as transsexual, transgender, intersex, or who have identified serious
difficulties with gender dysphoria.
Throughout this study, the issue of gender dysphoria (Colucciello, 1996) and the
prevalence of a significant number of self-identified male-to-female transsexuals
(Cohen-Kettenis and Gooren, 1999) and transgendered individuals (Conway, 2004)
as well as some individuals who identify as intersex, androgynous, gay and bisexual
has raised fresh awareness of historic theories of a possible biological/endocrine
foundation to variations in psychosexual development in humans (including sexual
orientation, core gender identity, and sexual identity). Some of these theories
were first forwarded in the 1960s by experts in sexual medicine (Benjamin, 1966,
1973; Diamond, 1965, 1996) and have been further refined relative to the role of
hormones in shaping gender-based behavior and sexual orientation (Dorner, 2001;
Friedman and Downey, 2002; Wilson, 1999; Michel, Mormont and Legros 2001;
Rudacille, 2005). The discoveries in this study suggest that gender dysphoria and
transsexual changes may be a plausible toxic endpoint for future exploration of
the human health effects of exposure to endocrine disruptors. Further, they call
into question the accuracy and adequacy of previous research and conclusions by
Titus-Ernstoff et al. (2003) in which they conclude that there is little support for
a hypothesis that prenatal DES exposure influences psychosexual development in
males and females (Udry, 2003).
The findings in this study relative to developmental abnormalities of the
male reproductive tract substantiate previous research on prenatal DES exposure
and various structural deformities in some DES sons and lend new support for the
hypothesis that endocrine disruptors may have substantial negative effects in
human males.
In underscoring the human health effects of prenatal exposure to DES in males,
the findings in this study are consistent with McLachlan's (2001) proposition that
DES be considered as a model for developmental estrogenization.
This paper has provided a brief encapsulation of the leading trends and outcomes
from a preliminary review of results from a five-year study of DES sons. Many of
the issues and questions deriving from this study will be further examined and
refined during 2005. Interested researchers are invited to join the DES Research
online group located at:
http://groups.yahoo.com/group/des-research
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Websites
DES Sons International Network Home Page
http://health.groups.yahoo.com/group/des-sons
DES Sons International Network Research Directory
http://health.groups.yahoo.com/group/des-sons/links
Directory of DES Research Literature by Decade, by Scott Kerlin
http://kindredspiritlakeside.homestead.com/DES_Research.html
A Discussion on the Relationship Between Gender Identity and Prenatal Exposure
to Diethylstilbestrol (DES) in 46XY Individuals, by Kathy Cochran
http://www3.telus.net/des1/
The DES Sons Online Discussion Network: Critical Issues and the Need for
Further Research by Scott Kerlin, Ph.D. and Dana Beyer, M.D. (unpublished draft
paper, August 2002)
http://www.kindredspiritlakeside.homestead.com/DES_Info.html
Transsexualism: An Unacknowledged Endpoint of Developmental Endocrine
Disruption? Master’s thesis by Christine Johnson, Evergreen State College
(Washington), June 2004
Abstract: http://www.transadvocate.org/id31.html
Thesis Full-text (pdf version):
http://www.transadvocate.org/sitebuildercontent/sitebuilderfiles/TS_EDCs.pdf
Basic TG/TS/IS Information, by Professor Lynn Conway, Ph.D. (2004)
http://ai.eecs.umich.edu/people/conway/TS/TS.html
A Kindred Spirit: Dedicated to the Advancement of Knowledge and Understanding
of Gender, by Dale Lynn Sims
http://www.kindredspiritlakeside.homestead.com/
Definition and Synopsis of the Etiology of Gender Variance (2003), from an
international committee chaired by Professor Milton Diamond, Ph.D.
http://www.gires.org.uk/etiology.php
Pacific Center for Sex and Society, John A. Burns School of Medicine, University
of Hawaii, Professor Milton Diamond, Ph.D., Director
http://www.hawaii.edu/PCSS/
The Etiology of Transsexualism, by Harry Benjamin, MD, from The Transsexual
Phenomenon (1966), Chapter 5.
http://www.symposion.com/ijt/benjamin/chap_05.htm
APPENDIX A
Gender Identity, Sexual Orientation, and Sexual Diversity of DES Sons
January 2002 Poll of DES Sons Network Members
Background:
The following question was posted as a “poll” for network members on December
22, 2001 and respondents were allowed until January 13, 2002 to respond:
If you were talking with your closest friend who likes you “just as you
are,” what term
would you use to represent how you define yourself at the present
time? (choose one)
The responses were as follows:
_____________________________________________________________
_______________________________
# Responses
Identity
% of Respondents
11
Straight Male
17.5
6
Gay Male
9.5
2
Bisexual Male
3.1
9
Transgendered
23
Transsexual (pre- or post-op)
14.3
36.5
2
Intersex
3.1
6
Androgynous
9.5
1
Female
1.5
1
Eunuch
1.5
2
Other
3.1
63
TOTAL*
100
* TOTAL: 63 Individual Responses from 102 network subscribers. Response rate
approximately 65-70% based on an estimated 90-95 active list participants
receiving the survey in January 2002; estimated 10 additional members received
survey but were not accessing their computers during the survey period of
December 22, 2001 and January 13, 2002.
_____________________________________________________________
_______________________________
APPENDIX B
DES Sons International Network 5-Year Summary Statistics: First Findings
_____________________________________________________________
_______________________________
Scott Kerlin, DES Sons International Network
5-Year Research Summary Update, October 2004
I. Basic Statistics and Findings on DES Sons Participating in the DES Sons
International Network Between 1999 and 2004
1. In the five years since formation of the DES Sons Network in July 1999,
approximately 600 individuals have requested more information or support through
e-mail follow-up requests and/or requests to join the Network. This is over and
above all information that is freely available for visitors to the Network’s website
(http://health.groups.yahoo.com/group/des-sons) which provides substantial
information and resources on DES without subscription. Because the DES Sons
International Network does not maintain statistics on total Internet traffic to its
website, there is no accurate method to gauge how many other affected individuals
may be utilizing this information.
2. Of those 600 individuals who have sought further DES information,
approximately 500 are 46XY males who indicated at the time of my initial Network
subscription screening that they had either strong suspicions (based on evidence
from family members) or actual confirmation (from mother, or direct access to
medical records) that they had been exposed to DES in utero. These 500
individuals with confirmed or likely prenatal DES exposure have been members of
the network sometime between 1999 and 2004. For this reason I consider our
study’s base sample size to have attained a total of 500 DES sons as of spring
2004.
3. The vast majority of individuals whom I have allowed to join the Network had
either “confirmed” (i.e. directly through medical records access or indirectly
through personal conversation with mother) or “strongly suspected” (i.e. all
evidence points in that direction, but medical records access and/or contact with
mother not possible) prenatal DES exposure. However, a few (less than 50
altogether since the Network was formed) who had no way of confirming their
exposure also were permitted to join in order to assist them with unanswered
questions.
4. Based on responses between 1999 and 2004 to Network surveys, responses
from individual online or telephone interviews, and follow-up discussions with DES
sons members, the three areas of greatest health concern among DES sons in the
DES sons’ network appear to be (a) hormonal/endocrine health issues; (b) gender
identity and sexual health issues; and (c) psychological/mental health issues
including anxiety and depression.
5. Somewhat lower proportions of members indicated concerns regarding
autoimmune disorders, infertility, reproductive tract abnormalities, ambiguous or
underdeveloped genitalia, epididymal cysts, testicular cancer, and erectile
dysfunction. Because not every individual member has necessarily disclosed the full
range of health issues or medical concerns by which he or she has been affected,
the relative significance of reported health concerns among DES sons in this
research study is an approximation, based on rigorous qualitative analysis of
information which has freely volunteered by network members.
6. Despite exhaustive efforts to clarify the history of health issues experienced
by DES sons, it appears that only a small number of DES sons contacting our
Network have suffered from any type of cancer-related health problems (primarily
testicular cancer during younger years). The Network continues to raise awareness
among members regarding potential cancer risks. These efforts include
participation in the annual prostate cancer awareness month activities of the
National Cancer Institute and membership subscription to monthly online alerts
from the International Society for Men’s Health and Gender (ISMH). Despite my
numerous inquiries, no case of prostate cancer has been disclosed by network
members as of July 2004.
II. DES Sons and the Significance of Gender Identity: Statistics of
Individuals with Gender-related Issues or Outcomes Among Network Members
1. Within a few months of the formation of the Network in 1999, several members
raised issues regarding gender dysphoria as among their (apparent) side effects.
Over time this issue became more common in private disclosures to me by
members, as well as online group discussions. Over time, gender identity issues and
transsexualism emerged in discussions among regular DES Sons International
Network members. Ultimately because of the sensitivity of many gender-related
discussions, some members wished to have a more private discussion environment
separate from the main DES Sons International Network. In January 2002 I
formed the DES-Trans Gender Support Group (DES-Trans) for more extensive
discussions of these issues.
2. Somewhere between one-quarter and one-third of members of the DES Sons
International Network since 1999 have indicated (through my private surveys
and/or interviews of members, membership poll responses, or through personal
introductions and subsequent discussion postings to the Network) that gender
identity and/or sexuality issues were among the most significant issues they
needed to understand or seek further support
3. The majority of individuals who joined the Network (i.e. somewhere between
2/3 and 3/4 of the total, or about 350 persons) did not mention gender issues or
concerns during their personal introductions, health histories, or subsequent
Network discussions. I have no way of knowing how many of these individuals may
also have gender-related issues, unless at a subsequent time they have chosen to
raise them (as some have in private correspondence with me). I suspect there are
others for whom it is an underlying concern but not an easy for them to articulate
without fear of ridicule or dismissal from others.
III. Statistics of Prevalence of Transsexualism, Transgenderism, Gender
Dysphoria, or Intersex Among “Likely Exposed” DES 46XY Individuals
Contacting or Joining the Network (N=158)
Among the population of DES sons in our network who have raised genderrelated questions and experiences, I have received personal stories and/or
introductions from more than 150 individuals with either confirmed or “strongly
suspected” DES exposure. Among 158 “likely DES-exposed” persons (confirmed or
suspected), their summary descriptions of identity and/or experiences reflected
the following.
There have been at least 93 individuals with confirmed prenatal DES exposure who
indicated they are either transsexual, transgendered, gender dysphoric, or
intersex. (These terms come from individuals' self-description of their identities
or primary health concerns.) Here is the distribution of those 93 individuals:
Confirmed DES-Exposed and Gender-Related Issues (N=93)
(1)
Confirmed Exposed and Transsexual:
(2)
Confirmed Exposed and Transgender:
(3)
Confirmed Exposed and Gender Dysphoric:
(4)
Confirmed Exposed and Intersex:
54 individuals
26 individuals
10 individuals
3 individuals
There have been at least 65 individuals with “strongly suspected but not yet
confirmed” exposure who indicated they are either transsexual, transgendered,
gender dysphoric, or intersex. Here is the distribution of those figures:
Strongly suspected, not confirmed DES Exposed and Gender-Related Issues
(N=65)
(1)
Suspected Exposure and Transsexual:
36 individuals
(2)
Suspected Exposure and Transgender:
22 individuals
(3)
Suspected
Exposure and
Gender Dysphoric:
(4)
Suspected Exposure and Intersex
none reported
_____________________________________________________________
_______________________________
7 indiv