Apparently, my vagina is not only “different from everyone else’s,” as a former gynecologist told me when I was 20, but also is a source of embarrassment for some people connected to me. Why? Because I dared to reveal the whole of my diethylstilbestrol (DES)-induced deformities, including my misshapen vagina and underdeveloped, one-third-normal-size, T-shaped uterus.
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.