I could understand the embarrassment by association if, perhaps, I had announced that I had tattooed an X-rated message for my husband on my vagina or undergone plastic surgery to have my vagina resemble that of a successful porn star.  However, my sin is to have been honest about the damage done to me, when I was innocently in utero, by the synthetic, completely useless estrogen DES.

If there were more awareness of the negative impact of DES, from its reproductive-tract abnormalities to its increased cancer risks, more of us who have been exposed would be able to help ourselves by identifying ourselves as DES Mothers, DES Daughters, DES Sons and DES Grandchildren; by educating ourselves, then advocating for ourselves, our children and grandchildren; and by ensuring that we have proper medical care. 

Instead, because all of the pharmaceutical companies—and most prescribing doctors—were afraid of the legal ramifications of notifying those millions of women exposed to DES, they kept quiet.  As a result, many DES Mothers, those who took the medication while pregnant (and other women to whom it was prescribed for menopause symptoms), have no knowledge of having taken this drug, which was prescribed under hundreds of brand names—and even inserted into prenatal vitamins. 

When DES Mothers are unaware of having taken DES, they are unable to inform, educate and warn their sons and daughters of the potential alterations to their reproductive systems and their greater risks of associated cancers, infertility and more.

Even some doctors are uneducated about DES and unaware of its life-long repercussions.  The first doctor to mention the uniqueness of my vaginal shape immediately asked if my mother had had trouble getting pregnant.  She hadn’t, I explained.  This doctor wasn’t knowledgeable about the myriad of bogus justifications for DES prescriptions, which ranged from eliminating nausea, to preventing miscarriage, to simply having bigger, healthier, happier babies. 

Because I contradicted the sole reason my gynecologist mistakenly believed DES had been prescribed, she never mentioned the drug by name, nor mentioned any other potential concerns.  She simply gave me another birth-control prescription and sent me on my way until my next annual exam. 

However, because of my DES exposure, I never should have been on the pill for I’d already overdosed on synthetic estrogen as an embryo, therefore additional exposure to it could kick start its negative side effects, such as vaginal, cervical, uterine and breast cancer.  Further, because of my increased risk of cancers of the reproductive organs, I require a special, more-thorough annual pap smear, which was never done.

But, this was only the first missed opportunity.

When I was 35 and unable to have a successful pregnancy, my reproductive endocrinologist performed a Hysterosalpingogram (HSG) that revealed my deformed, underdeveloped, T-shaped uterus.  She never mentioned DES as the cause or a potential cause, nor did she caution me about the risks of the course of treatment she was recommending for my future pregnancy attempts:  Injecting myself with even more estrogen in order to make my tiny uterus less rigid, therefore more likely to stretch out during pregnancy.

This was the second missed opportunity.

Searching online, I first learned about the link between DES and the T-shaped uterus after my HSG, but the information I found was solely about the effect of my uterine abnormality on fertility and pregnancy.

I asked my mother if she had been given any medication when she was pregnant with me, mentioning that DES had sometimes been injected into patients.  She knew she’d never been given shots and had no memory of having taken other medications while carrying me.

This was the third missed opportunity.

With no awareness that I am a DES Daughter, with no knowledge of the potential consequences of repeated injections of estrogen, I did three rounds of intrauterine inseminations (IUIs), complete with fertility drugs including estrogen.

After I successfully conceived, and my son was born 4½ years ago, I considered myself as having triumphed over my deformed body, and I gratefully moved on with my life.  Also, I went back on the pill, exposing myself to estrogen once again.

When my husband and I moved to the Chicago suburbs four years ago, I don’t even know if I mentioned my T-shaped uterus to my new gynecologist, because I thought it was a non-issue.  When I consulted with this gynecologist about my risk for ovarian cancer because of my three prior medicated IUI cycles, plus my desire to pursue in vitro fertilization (IVF) to have another child, she explained that I was not at any increased risk because I had stopped my ovulation for the majority of my life by being on the pill.  She stated that the women who have died of ovarian cancer linked to infertility medications were never on the pill, never had a pregnancy and over-stimulated their ovaries over and over in their increasingly desperate attempts to conceive.

Yet another missed opportunity.  For me, an unidentified DES Daughter, the birth-control pill was not the salvation that made me able to pursue infertility treatments; it put me more at risk.

Believing it was safe for me to pursue the three IVF cycles that our medical insurance carrier will cover, my husband and I moved forward with IVF with pre-implantation genetic diagnosis (PGD).  At my initial consultation with my reproductive endocrinologist, I gave him the X-rays of my T-shaped uterus.  He never mentioned DES, nor did I, being unaware that I am a DES Daughter.  And, he started me on a medication protocol—once again involving injections of estrogen.

Oh, all the unnecessary estrogen…

It wasn’t until five weeks ago, when I was doing a search for terms related to my website, to see if and when www.mkkennedy.com would pop up, that I found the DES Action USA website, www.desaction.org, and learned the full impact of DES exposure.  After communicating with Fran Howell, the executive director of DES Action USA, I learned that the T-shaped uterus is a sure sign that I was exposed to DES because this abnormality does not occur in nature.  And, after providing my mother with my increased knowledge of the multitude of ailments for which DES was prescribed, she now remembers taking medication for nausea while she was pregnant with me, but only for a few days because it didn’t work. 

And, yes, it didn’t work, because DES did NOTHING for these millions of innocent women to whom it was prescribed.  Yet it did horrific, hidden things to their children.  Horrific, hidden things that are painful to reveal, such as penises with the holes in the wrong places, undescended testicles, abnormal vaginas, T-shaped uteri.

I spent years ashamed of my vaginal deformity.  I was completely isolated, for I had heard nothing nor read anything about any woman with a similar problem with her private parts.  Only in the past few weeks have I been inundated with information, because I started actively searching for it. 

DES Action co-founder Pat Cody’s book, DES Voices: From Anger to Action, available via www.desaction.org, has been the main source of my newfound knowledge.  DES is a well-kept secret, except for this book, plus a handful of others written in the 1970s and 1980s by and about a few brave DES cancer survivors, women who had to have their vaginas, cervixes, and uteri removed, then have their vaginas reconstructed.

I asked my husband, “What would you do if I had to have a vaginectomy?”

“Oh, that would be bad,” he said.

The DES secret was initiated and welcomed by the pharmaceutical companies, yet it is perpetuated by the DES exposed, who, understandably, want to fit into the world as normal.  And, when clothed and often unclothed, we look normal on the outside, so our birth defects are easy to hide.  We’re not missing arms or legs.  But, unlike missing limbs, our exposure to DES can kill us.

In my case, my vaginal deformity and T-shaped uterus are only identifiable by medical professionals.  I could have gotten away with never having said a word to anyone about my vaginal abnormality. 

However, hiding, maintaining the lack of awareness of DES, helps no one.  Except those embarrassed by association with my vagina, apparently. 

I am now a 41-year-old, confident woman.  My husband and I are both comfortable with my being open about the effects of DES exposure on me.  (As I explained in my post, “How My DES Exposure Has Affected My Husband,” he had a mini-freak-out when I told him I’d written about my vagina—until he read my post.  Then he was fine with it.) 

My vaginal abnormality is not my fault.  I am not talking about my vagina to be sensational.  I have no desire to be known as “Woman with Weird Vagina.”  I am speaking out because, if only more of the DES exposed had done so, perhaps I could have made the connection between my deformities and DES, I could have educated myself, and I could have protected myself.  I could have stopped two decades of unnecessary exposure to estrogen.  And, if I had decided to move forward with infertility treatments regardless, my decision would have been an educated one.

I didn’t have those opportunities, but I deserved them.  And, so does every other person exposed to DES.

So, to those who are embarrassed that I’m writing about my vagina, please recognize how blessed you are to not have suffered my same fate.  You have no investment in knowledge about DES becoming more prominent, but I do.  My mother is at greater risk for breast cancer.  I’m at risk for various, numerous health problems.  And, with new information that DES can affect the third generation, I have to fight for my son and the unborn twins I am carrying, all DES Grandsons.

Lucky you—for you can avoid any future embarrassment tied to my discussions of my DES-induced deformities by simply not reading my blog posts. 

But I am a DES Daughter, mother of DES Grandsons, so I don’t have the luxury of passivity or avoidance.

As I explained in my Part 1 post, after four unsuccessful intrauterine inseminations (IUIs) from August 2003-January 2004, my reproductive endocrinologist recommended that I have a Hysterosalpingogram (HSG), a procedure in which dye, released into the uterus, flows up through the fallopian tubes, revealing the shapes of each reproductive structure and any blockages affecting fertility. 

After the procedure, we sat in her office, and she said, “Both of your tubes are open, but we have an unanticipated problem.” 

She showed me the x-ray of my T-shaped uterus, explaining that it was underdeveloped, one-third normal size, and might never be able to accommodate a full-term pregnancy.  She said that this uterine abnormality couldn’t be “fixed,” and my only hope was to expand my uterus through pregnancy, which could result in miscarriage after miscarriage, but, with each pregnancy, my uterus would hopefully grow in size.  

She went through another patient’s file to show me an x-ray of what a normal uterus looks like, and I was stunned when I compared it to mine.  Below is the x-ray of my uterus compared to a normal one, so the difference in size is clear.

She said that the blood flow to my uterus was compromised, which contributed to my too-thin uterine lining.  She explained that I would no longer be able to exercise, since exercise would increase blood flow to other areas of my body, further restricting its flow to my uterus. 

She said that implantation would be more difficult also because of the reduced surface area of my uterus:  Because it was two-thirds smaller than normal, there were fewer locations in which an embryo could implant.  Further, she said the one and only ideal location for implantation was the tiny intersection or middle of the T, because that would allow a baby to stretch both across and down.

She said that she could stall my ovulation to extend the length of my too-short menstrual cycle, hopefully giving my uterine lining time to thicken, and she could prescribe injectable drugs that would make my uterus “less rigid,” therefore more likely to stretch during pregnancy. 

In closing, she had that we should try, that “difficult didn’t mean impossible.”  I left her office, reeling; went home to conduct research on the Internet; then didn’t sleep for three days.

I couldn’t imagine moving forward to try to get pregnant, knowing in advance that I would likely miscarry multiple times.  I felt like what the doctor had described amounted to sacrificing babies in order to eventually have a “live” one.  It made me sick. 

Plus, even if a pregnancy were successful, I was worried about my baby being cramped in my tiny uterus and maybe experiencing discomfort or pain as a result.  I knew I couldn’t be responsible for that.

So, I joined Resolve: The National Infertility Association and, through its referral service, was able to speak to two women with uterine abnormalities, so I could hear first-hand stories of their experiences.  One woman’s uterus was not T-shaped, so her problems didn’t directly correlate to mine.  The other woman had a slightly T-shaped uterus—and had lost 11 babies over seven years, before finally having a successful pregnancy.  She and her husband had just adopted their second child through Catholic Charities at a cost of $30,000.

I started researching adoption, joining a local Resolve adoption support group.  My primary-care physician suggested that she put me on Lexapro® to treat anxiety and depression.  I balked, but she was stern.  She asked, “How are you going to make a decision when you can’t sleep, therefore can’t think straight?”  I relented.

Overwhelmed by information overload, I accepted an unbelievably generous offer:  A work colleague offered for me to speak with his wife, a high-risk obstetrician, about her real-world experience treating women with T-shaped uteri.  While I was intimidated by my own doctor, I was comfortable with Betsy, whom I’d met when she’d accompanied my colleague to several industry conferences.  When she called, for more than a half hour, I asked every question I had, expressed every concern. 

She told me that she currently had a patient with T-shaped uterus who had miscarried once in her first trimester, then once in her second trimester, but was at the tail-end of a successful third pregnancy. 

She explained when a baby’s pain receptors become functional, but said that all babies are cramped inside their mother’s uteri. 

In closing, she said that I would not be choosing to “sacrifice” my babies.  She said that miscarriages are relatively common, and, while I was at greater risk for miscarriage, there was no guarantee that I would have one at all.  She said she thought I should at least try to get pregnant, and reminded me that I could only make a decision about how much I could handle–after personally experiencing whatever resulted.

After talking with Betsy, I decided to move forward with additional IUIs, while simultaneously investigating adoption.

I injected Lupron® to stall my ovulation, wore estrogen patches to try to thicken my uterine lining, then injected Gonal-f® to stimulate ovulation.  I got pregnant, but miscarried at the five-week mark.  I’ll never know if it was an implantation problem or an embryo problem because the testing of the miscarriage material was inconclusive.

I didn’t have success during the next attempt, but got pregnant with my son, now 4 ½, on May 20, 2004, during my seventh IUI. 

During my first ultrasound, when I was six-weeks’ pregnant, my doctor told me the embryo had almost been ectopic, that it had implanted at the farthest possible left side of the T.  (DES Daughters, because of their T-shaped uteri, are much more likely to have ectopic pregnancies.)  She cautioned that I “could miscarry at any time.”  She performed an ultrasound each week for the next three weeks, and each time she said that my baby was growing to the right, toward the ideal open space, but, once again, I could miscarry at any time. 

I can’t describe how hard it was to be pregnant and not be able to risk being wholeheartedly happy, because of the reality that I could lose my desperately wanted child at any time during the pregnancy.  I coped one day at a time, trying to be Zen as long as my baby was still safely inside of me.

When I was 10-weeks’ pregnant, my doctor released me into the care of a high-risk obstetrical group, because, with a T-shaped uterus, I was at risk for early miscarriage and also cervical incompetence, which can result in late miscarriage or pre-term delivery. 

I had no complications until the 27-week mark, and I’ll write about the final trimester of my high-risk pregnancy in my next post.

For more information about DES exposure and its negative ramifications, click on my DES links on the right side of this Home Page.

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.

Then he read the post and laughed that I referred to my vagina as “fully operational.”

A few minutes later, he asked, “What are you going to blog about today?”

“How DES has personally affected me.”

“It’s starting to personally affect me,” he muttered.

I reminded him that he never noticed anything wrong with my vagina, so it’s not like my abnormality made him recoil in horror.  Its unique shape, apparently, is only recognized by medical professionals. Further, I dated a doctor years ago, and, though I never slept with him, he did see my vagina, and he didn’t mention a thing.  Maybe he was being polite.  Or maybe, as an urologist, he didn’t have training in the vaginal area.

Anyway, I told my husband that today I would clarify that he didn’t marry someone whose vagina is freakish to the lay observer.  In fact, none of my partners has ever said a word.  And, even my doctors haven’t been alarmed at the sight of it. 

So, hopefully, I’ve now tiptoed back from that line he thought I’d crossed.  I just never considered that my vagina would reflect on him negatively.  After all, doesn’t him accepting me, with all of my imperfections, demonstrate that he’s an exceptionally good guy?  He married me, complete with T-shaped uterus and abnormal vagina, plus he adopted my anonymous-sperm-donor-conceived son. 

I will write more about how DES has affected me tomorrow because I have an unbelievable headache today.  Last IVF cycle, starting a few days after my embryo transfer, I had a headache for six straight days, until I, unfortunately, got my period.  Because the only new medication I take post-transfer is Endometrin®, a three-times-daily vaginal progesterone suppository designed to keep my uterine lining thick, I re-read the patient information pamphlet, and 3% of women get headaches as a result.  Lucky, lucky me…