In DES Action co-founder Pat Cody’s book, DES Voices: From Anger to Action, about the disastrous effects of diethylstilbestrol (DES) use by pregnant woman, she says, “Starting in 1950, medical journals carried warnings on the use of DES…  But DES was a very profitable product.  The drug companies ignored the warnings and continued to recommend dosages that often exceeded 100 mg a day.  To place this in perspective, birth control pills today have 20 micrograms of estrogen.  A pregnant woman on the complete course of DES got the estrogen equivalent of 500,000 present-day birth control pills.” 

Because DES traveled through the placenta, these massive dosages of synthetic estrogen passed into the child(ren) of each and every woman given DES.  For DES Daughters like me, the extra, unnecessary, unnatural estrogen affected their reproductive systems in varying ways, depending on what DES dosages their mothers were given and when.

“DES exposure of an embryo forever programs a cell to act differently for the rest of its lifespan,” said Arthur Haney, M.D., when he spoke at the DES Action USA symposium in 1989.  (Dr. Haney is now Chairman, Department of Obstetrics and Gynecology, at the University of Chicago Medical Center.  DES Action is a nonprofit organization that provides support, information and advocacy for individuals affected by exposure to DES.)  Dr. Haney continued, “And that’s a principle that epidemiologists don’t know and developmental biologists do know:  The cells of the infant are very different from the cells of the adult.  And they will stay different if you catch them with some agent like this in their very early, vulnerable time.  They will never respond the same.  In the DES-exposed genital tract of the female adult is a cell population within the endometrium [uterine lining] that will spend a lot of time acting in a different fashion that the endometrium of a normal woman.   There’s no way you can go back and reverse that programming because it happened at the early susceptible interval when all the DNA was getting organized for its secretory capability for the rest of its lifespan.” (Source:  DES Action: From Anger to Action by Pat Cody.)

I was born in July 1968, so my mother was pregnant with me starting in mid-1967, 17 years after the initial medical-journal warnings and still four years before DES was “contraindicated for use in pregnant woman” because of its link to the very rare vaginal cancer found in DES Daughters.  DES’s other negative consequences were discovered later. 

Today I’m writing about how my in utero exposure to DES has affected my menstrual cycle, vaginal shape and uterine lining, and my next DES post will address my DES-caused T-shaped uterus and resulting battle with infertility.

I got my period when I was 13, which was pretty typical of other girls I knew.  However, I have a 20-day menstrual cycle, rather than the normal 28-day one. 

When I was in high school, I had severe cramps, pain so intense that I would have my boyfriend sit on my stomach to relieve it.  From high school until I started taking an antidepressant when I was in my 30s, I had extreme pre-menstrual syndrome (PMS), feeling so emotional and despondent that I would cry daily during my pre-period week.

With one week of PMS, followed by one week of cramping, I would have one week of every three that I felt emotionally and physically well.

To try to normalize my menstrual cycle, my gynecologist put me on the birth-control pill during my senior year of high school.  The initial plan was for me to take half of the pill pack per cycle, starting mid-way through:  Because I wouldn’t ovulate while on the pill for 10 days, my too-short cycle would be lengthened.  Instead my doctor deemed the pill to be too strong for me because, during the two-month trial, I didn’t get my period at all. 

The second strategy was for me to go on “the lowest dose” birth-control pill for six months, forcing my cycle to be 28 days.  After stopping the pill, my newly trained body would supposedly stick to the same 28-day routine. 

My six months of birth-control pill popping was up at the beginning of my freshman year at Miami University, and my cycle immediately returned to 20 days, with the intense hormonal and emotional swings.  I would call my mother and my hometown boyfriend, who was away at school in the South, and sob.  I would have evil, irrational thoughts:  During my boyfriend’s final-exams week that first semester, I thought about calling him to break up with him, simply because it would be incredibly cruel.  (He is the same boyfriend who strong-armed me into having an abortion the year prior, so I obviously had some repressed, residual anger toward him.  But the rational me prevailed, and I didn’t make the call.) 

Rather than suffer physically and psychically, I’ve spent most of my life on the pill in order to be normalized cycle-wise and emotionally. 

However, menstrual  problems handled, the summer between my junior and senior years at Miami University a new gynecologist told me that my vagina is “different from everyone else’s.”  I was too timid to ask exactly what was wrong until the following summer.  Being heterosexual and never having seen porn, I’d never seen another vagina with which to compare mine.  I was filled with shame that something was wrong with me in a place so private, a place so wrapped up in sexuality, a place so tied to whether I was considered physically attractive, a place inextricably connected to whether I was considered sexy. 

I remember fraternity guys in college talking negatively about how another woman’s vagina had “lips so big that it looked like a catcher’s mitt.”  I didn’t know what mine looked like, compared to other women’s vaginas, but I was self-conscious because my doctor finally explained that I had an extra flap of skin.  (I hadn’t asked her to point out exactly where this extra skin was…)  Thankfully, no man has ever negatively commented on it, and, even when I’ve asked, they’ve said they didn’t notice anything unusual.  So, I eventually got over my concern about my private parts.

Being on the pill for most of my life, since age 17, gave me a normal 28-day cycle, and the pill’s hormone cocktail and the antidepressants I took during times of extreme stress countered my monthly mood swings.  However, when, age at 35, I decided to try to get pregnant on my own via donor-sperm insemination, I obviously had to go off the pill:  In order to get pregnant, I had to ovulate.

After one post-pill month of a normal-length cycle, my abnormal body returned to my normal of 20 days.  And, because I had too-few days in which my uterine lining thickened, prior to being released as blood and tissue during each period, my uterine lining wasn’t thick enough to facilitate successful embryo implantation. 

One intrauterine insemination (IUI) after another, I would have initial pregnancy symptoms, faint lines on pregnancy tests, then get my period.  It wasn’t until after four unsuccessful IUIs that I was willing to undergo the Hysterosalpinogram (HSG) my reproductive endocrinologist had recommended that she perform upfront.  I had been frightened by the side effects outlined in the brochure she’d given me, including perforating my uterine wall and infection.  But, after four failures, including failures in which I knew I was pregnant, I was willing.  My T-shaped uterus was revealed. 

My next DES post will explain the ramifications of my too-thin uterine lining and my T-shaped uterus on my attempts to get pregnant both in 2003-2004 and this year, in addition to their impact on my pregnancy with my son, now 4 ½.

To order Pat Cody’s informative book, DES Action: From Action to Anger, log on to www.desaction.org, click on Resources, then on Offline Books & Resources.