With no knowledge of my DES exposure, I was unable to protect myself and inadvertently put myself in more danger by taking birth-control pills for more than 20 years to regulate my too-short, 20-day menstrual cycle; by injecting myself with estrogen and wearing estrogen patches for three intrauterine insemination (IUI) cycles in 2004 to combat my DES-induced infertility, resulting from my underdeveloped, one-third-normal-size, T-shaped uterus, complete with uterine lining too thin to support successful embryo implantation; and injecting estrogen for two in vitro fertilization (IVF) cycles this year, once again to overcome my DES-generated infertility.

In short, being bathed in synthetic estrogen while in utero, which puts me at increased risk of breast, uterine, cervical and vaginal cancers, screwed up my reproductive system to the extent that estrogen was recommended in order to normalize my menstrual cycle and enable me to bear children.  And, this extra estrogen has elevated all of my cancer risks. 

Only because of this website and blog, which I started immediately before my second IVF cycle, did I learn that I am a DES Daughter.  My mother has since confirmed that she did take medication for nausea early in her pregnancy.

However, only after receiving the book DES Voices: From Anger to Action from DES Action USA, the nonprofit organization whose mission is “to identify, educate, provide support to, and advocate for DES-exposed individuals, as well as educate health care professionals,” did I learn of danger of not only having taken birth-control pills, but also having undergone infertility treatments involving injectable estrogen. 

But, I received the book on Thursday, August 6, the day of my embryo transfer, so my estrogen injections had been completed a week and a half prior.  Any damage had already been done.   

Since August 6, when I had two male embryos placed into my uterus, then read DES Voices cover to cover, I have been scared that I have vaginal cancer and that, if I were pregnant, my husband and I would be forced to make a decision, depending on the severity of the cancer, about whether and how to pursue treatment based on how it would affect me and our unborn child or children.

On August 17, I received confirmation of my pregnancy.  I was thrilled, but frightened.  I shared my fears with no one, not even my husband, because I didn’t want to worry anyone needlessly. 

On August 26, an ultrasound confirmed that my high levels of Human Chorionic Gonadotropin (HCG), the pregnancy hormone, did signify twins.  Once again, I couldn’t help but be thrilled; the feeling was spontaneous.  But this news also meant that, if I did have cancer, we could put two children, not just one, at risk.

On September 18, I learned, via another ultrasound, that I had lost Baby B a few days beforehand, in his eighth week.  With this devastating news, I, who’d been feeling miraculous after weeks of positive ultrasounds, realized that I am, as we all are, immune to nothing.  Harm, loss, tragedy can forever change any of our lives—at any time.

It wasn’t until September 25, my 10th week of pregnancy, during my first examination at the Center for Maternal and Fetal Health, the local hospital’s high-risk pregnancy group, that I had my first-ever DES Daughter Annual Exam.  It is a special, more-thorough physical and pap smear designed to identify any DES-related abnormalities, particularly clear cell adenocarcinoma—cancer—of the vagina and cervix.  (For the specifics of the Annual Exam of DES Daughters, as recommended by the Department of Health and Human Services’ Centers for Disease Control and Prevention, click onto www.desaction.org, then the DES Daughter tab on the left.)

Because I’d already had an annual pap smear in May, which had shown no pre-cancerous or cancerous cervical tissue, this exam focused on my vagina, where pap smear samples are not usually collected.  And, instead of scraping off just one tissue sample, my doctor gathered four, one from each quadrant.

He also conducted a visual inspection and told me that he thought all of the tissue looked normal.  But, I couldn’t relax until receiving the lab results.

Although I have been blessed in many ways in recent years—meeting my future husband nine days before getting pregnant via donor-sperm insemination, being able to conceive and carry my 4-year-old son, when many DES Daughters remain childless, and getting pregnant, at age 41, during my second IVF attempt, in my life each and every miracle has been countered by tragedy.

I was unlucky in utero, which is an early start.  My DES exposure has negatively affected me since the onset of menstruation at age 13.  I’ve suffered from infertility.  I’ve lost seven unborn children, most recently Baby B, to whom I’d grown extremely attached, having seen him on multiple ultrasounds. 

So, with my history, I could imagine being pregnant at age 41, filled with such joy, then finding out that I have cancer.

But, my pap smear results came in while we were on vacation last week, so I now have physical proof in my hands, a lab report that definitively states, “Negative for intraepithelial lesion/malignancy.”

While my uterine abnormality still makes my pregnancy high-risk, I’ve already proved that I can carry a very large child to term, to the full 40 weeks of pregnancy.  My son was a whopping 9 pounds, 7 ounces when he was born on his due date.

So, yes, I am a DES Daughter, which has created life-long problems for me—and will continue to haunt me.  I can’t change the decisions I made before knowing my DES Daughter status.  But, now that I am informed and educated, I will protect myself vigilantly.

And, today, I’m 41, in the second trimester of my pregnancy, and cancer-free.

Each night as I lie next to him for a few minutes while we talk before his bedtime, he caresses my hair and says, “I’m sorry one of the babies died.”

And, I say, “I know.  So am I.”

Sometimes he asks to listen to my stomach, to see if he can hear anything.  He asks specifically where Baby A and Baby B are located.  I’ve told him that Baby B won’t be moving or making noises anymore, and he accepts that.

He makes statements like, “I wanted Baby B to be named Whiplash”—a character in the Ironman television series—that make it obvious he’s just 4.  (He wants Baby A to be named Ironman.)  But then he’ll follow up with adult-sounding statements, such as, “Maybe your body will absorb him,” which he overheard from Dr. H, who counseled me after we learned of Baby B’s loss.

Two nights ago, he asked me if God could walk on water.

I said, “God can do anything He wants to do.”

“God will do anything we want Him to do?”

“No,” I corrected.  “God can do anything He wants to do, but it is not necessarily what we want Him to do.”

Because we’d just been talking about Baby B, I continued, “For example, we didn’t want Baby B to die, and he did.”

My son was silent for a moment, then said, matter-of-factly, “So, God killed Baby B.”

I thought for a minute, recognizing the importance of my response.  Then, I replied, “No, God didn’t kill Baby B.  He just didn’t stop him from dying.”

Then I started with the rationales, the ones I need to believe in, even though the doctor said we’ll never know why Baby B’s heart stopped beating a week ago.  “I think that maybe there was something wrong with him, that he was sick and could never have lived.  So, God didn’t make him die, he just let him die because it was best for Baby B.”

My son was quiet for a few minutes, to the point where I thought maybe he had fallen asleep, but then he said, “I think maybe Baby B was a robot baby.”

“Oh…”

“And, maybe his system just shut down.”

Last night, after he started off with, “I’m sorry one of the babies died,” then continued with, “I wanted two babies,” he said, “We’ll have to bury him.”

I explained that Baby B won’t be born, that hopefully he will just get smaller and smaller inside of me, until he disappears. 

“Even the tiny speck?” he asked, remembering that Dr. H said Baby B may end up as a tiny calcification that will look like a white speck on the ultrasound screen.

“Even the tiny speck.”

“Oh.”

I’ve explained that Baby B is now a guardian angel, that he will watch over us and Baby A.  And, my son wants to know if Baby B can see through buildings, if he has wings, if he can fly.

My conversations with my son, who looks at the world with innocence, affect me.  Since we learned of Baby B’s death last Friday, I’ve thought day and night about this issue of God and His/Her role in our lives.  What I’ve determined is that, although I had originally felt that God was “fucking with me,” He/She doesn’t have that kind of time.  And, what I’ve been taught, as a Catholic girl, is that God permits free will—and its resulting fallout.

So, 42 years ago, when my mother was pregnant with me, God didn’t intervene when her beloved doctor, misled by pharmaceutical companies, prescribed her an anti-nausea medication that included diethylstilbestrol (DES), the completely useless synthetic estrogen that seeped through the placenta into me, deforming my reproductive organs.   

And, God has let “nature takes its course” ever since, although my “nature,” my body, is now unnatural, for my uterus was never fully formed, it was in the shape of the letter T, and it was one-third normal size before I carried my son to term, because of the profit-above-all-else pharmaceutical bastards. 

So, I’ve lost baby after baby because of implantation problems and miscarriage.  But, God isn’t participating.  God didn’t take Baby B from me.

I will never know if the reason Baby B died is because his gestational sac wasn’t fully attached to my uterine lining from the first ultrasound, if although the progesterone-oil injections made him able to reattach within one week, his developmental delay in those critical first days was too much to overcome. 

I will never know if he had some sort of other problem that made him, in the end, “incompatible with life,” a term used by our genetic counselor, who managed the preimplantation genetic diagnosis (PGD) of our embryos.

I will never know if this loss, my seventh loss of a child, is due to DES or something else.

But, I’ve finally come to terms with the fact that this loss has nothing to do with God.

And, for this realization, I have my 4-year-old son to thank.

I have hated driving to downtown Chicago over and over, always having to give myself 90 minutes of travel time, because of varying, unable-to-be-estimated traffic patterns.  My appointments have sometimes lasted a mere two minutes, the time necessary for a blood test, after which I’d climb back into my car to start the long drive home to the suburbs.

I have hated being repeatedly stuck in alternate veins located on my inner arms, opposite my elbows, for these blood draws.

I have hated having my legs in stirrups for countless vaginal ultrasounds to check the growth of my follicles and the thickness of my uterine lining. 

I have hated the dozens of injections that I’ve had to give myself in my stomach, my thigh and my backside, their resulting bruising, soreness, bloating, headaches, exhaustion and other side effects.

I have hated twice having a needle inserted through my vaginal walls to retrieve my eggs from my ovaries.

I have hated the three-times-daily Endometrin® vaginal progesterone suppositories, necessary when ovaries are unable to sustain a pregnancy with their own progesterone production because they were punctured full of holes during the egg retrievals.  The cottage-cheesy vaginal discharge is repulsive.

I have hated the emotional impact of undergoing treatment for infertility, the need to have hope to make it through the process, yet the constant underlying fear of failure, the fear of how I would possibly move forward if I failed.  Not to mention the feeling that failure would somehow be my fault.

I have hated having to dip into my retirement account for the money to pay for our out-of-pocket costs for our two IVF cycles.

I have hated the “you’re-not-pregnant” phone call.

But I loved the two embryo transfers, seeing our babies flickering across the ultrasound screen like shooting stars, as they were released from the catheter and entered my uterus.

I loved the congratulations phone call, confirming my pregnancy.

I’ve loved the three ultrasounds since, when I get to see my little guys, their gestational sacs, their tiny pulsing hearts, their growth.

During yesterday’s ultrasound, my cervix was closed, which the IVF coordinator said is “very good.”  She found Baby A first, and she deemed his heartbeat and yolk sac as “good.”  She said the same about Baby B’s heartbeat and yolk sac. 

She noted that I still have some separation in my uterine lining between the two gestational sacs, diagnosed last week as one of two subchorionic uterine hemorrhages, but, because I’m no longer spotting, “It’s alright.”

Yesterday was the first that she’d mentioned the twins’ yolk sacs, so I asked exactly what they are.  She said that each yolk sac “provides nutrition for the embryo before the placenta takes over.  They provide the blood supply and nutrition to each fetus.  Once the placenta takes over, the yolk sacs will shrink gradually.” 

Near the end of the ultrasound, my doctor stepped in.  He declared, “What we have is not 100% success.  It’s 200% success.” 

The IVF coordinator led him through the ultrasound results for each baby, then he told me to get dressed, then we’d talk in his office.

As she finished up, the IVF coordinator handed me my first ultrasound picture featuring both babies at once, which I held as I walked into my doctor’s office. 

Our Twins: Baby B (left) and Baby A (right)

As I sat down, I showed him the ultrasound scan, then asked if he’s worried that Baby A’s gestational sac is so much bigger than Baby B’s.  He said no, that what is most important is the size and growth of each embryo and the strength of each baby’s heartbeat, all of which are on track for their gestational age.

I asked him for the exact measurements of each, which were 11.1mm for Baby A and 9.9mm for Baby B.   But the clinic’s ultrasound machine, which he described as one of the best available, has a standard of error of +/- 1mm to 2mm.  With an only 1.2mm difference in measurement between Babies A and B, the reality is that no difference in size may exist. 

He went through my chart, telling me that, for the purposes of calculating my due date, the first day of my last period must be listed as July 17, even though I really got my period in the afternoon on July 18, therefore July 19 was the official first full day of my menstrual cycle.  He explained that, because my cycle was manipulated, because my IVF egg-retrieval was August 1, the first day of my last period must be determined as July 17, regardless of reality, which makes my due date April 23. 

“No one can change these dates,” he said.  He wrote them on his business card and handed it to me.  “When you’re asked for these dates, you give these.”

He told me I can stop taking my once-daily dose of baby aspirin, can reduce my progesterone-oil injections from two to one a day, and can stop both the progesterone-oil injections and vaginal progesterone suppositories on September 26, when I hit my 10^th week of pregnancy.

I thanked him for getting me pregnant, and he said, “I told you it would work.”

He was always so positive, even after the first failed cycle, which I had assumed was his attempt to keep my spirits up, knowing that depression doesn’t faciliate success.

Even though the majority of my experiences with the IVF clinic and its staff were negative, the doctor and nurses, the genetic counselor and the reception staff were all wonderful to me.  The torturous treatments they prescribed and conducted were simply necessary to achieve pregnancy in a 41-year-old woman with a uterine abnormality.  Yes, that 41-year-old, six years into advanced maternal age, with an arcuate uterus, is me.

So, although I was so relieved that yesterday was my final appointment, my close-out ultrasound and consultation, I felt sad because of all of the emotions I have experienced at the clinic, with my doctor and nurses, and because I am so grateful to every member of the staff  for helping me become pregnant.

As my doctor escorted me to his office door after our closing consultation, I wanted to hug him, but I barely know him, and our relationship is purely a professional one, even though his profession involves major emotions.  So, I just shook his hand, not wanting to make him uncomfortable.

He told me to come back to visit, to show the staff the babies. 

And, I’ve already decided that I will hug him then.  I will hug every single one of them then.

Dr. H. was accompanied by a resident, and she asked if it was OK if the resident asked me some questions.  I said it was fine.  But, after outlining my history, the resident said not a word, posed not a question.  I think my case may be too complicated for those who aren’t fully trained.

I am 41.

I did in vitro fertilization (IVF) with pre-implantation genetic diagnosis (PGD).

I am seven-weeks’ pregnant with twin boys.

I am a DES Daughter, whose formerly T-shaped uterus is now a slightly larger arcuate uterus, thanks to my 4½-year-old son stretching it out when he was in utero.

My uterine abnormality puts me at risk for cervical incompetence.

My prior two surgeries to remove pre-cancerous cells from my cervix—a colposcopy and LEEP—also put me at risk for cervical incompetence.

I have Rh- blood, while my husband’s is Rh+.

Since my egg retrieval, I have been inserting vaginal suppositories of Endometrin® three times a day.

I take one baby aspirin and one prenatal vitamin each day.

Because I’m prone to anxiety and depression, I also take one 20mg dose of Fluoxetine®, the generic form of Prozac, daily.  (I switched from Cymbalta®, which is not safe during pregnancy and breastfeeding, to Fluoxetine prior to my IVF cycle.)

I have Reactive Airway Disease (asthma), which worsened during my pregnancy with my son; however, I have already consulted with my allergist, who has prescribed medications that are safe during pregnancy.

At my six-week ultrasound, one of my twins, Baby B, was not fully attached to my uterine lining, and he and his gestational sac were “considerably smaller” than Baby A and his sac.

At my six-week ultrasound, I was told Baby B would likely die, and, if I miscarry him, I may miscarry Baby A also.

Because of Baby B’s gestational sac’s separation from my uterine lining, I was prescribed once-daily intramuscular injections of progesterone oil.

At my seven-week ultrasound, Baby B’s sac was fully attached to my uterine lining, he had grown, and he had a visible heartbeat.

However, the day following that IVF clinic ultrasound, I started spotting, which the Center for Maternal and Fetal Health’s ultrasound technician had just diagnosed as originating from two subchorionic hemorrhages inside my uterus.

In response to my spotting, the evening before the IVF nurse had directed me to do twice-daily injections of progesterone oil, rather than the previously prescribed one a day.

In my only successful prior pregnancy, I was dilated starting at 27 weeks’ gestation, so was hospitalized to receive the steroid injections that advanced my son’s development, then put on bed rest.

At 31 weeks of pregnancy, I was dilated further and having contractions, so I was hospitalized again, then sent home on bed rest. 

My son was born on his due date, at a whopping 9 pounds, 7 ounces.  However, he aspirated meconium (his first bowel movement, in utero) into his lungs during delivery, so he was born in acute respiratory distress, spending five days in the Neonatal Intensive Care Unit.  He had no long-term repercussions; however, he has Reactive Airway Disease, just like me.

I handed Dr. H the 2004 X-ray of my T-shaped uterus, plus several pages of information about the pregnancy risks for DES Daughters, printed from the DES Action USA website, www.desaction.org.  Thankfully, Dr. H is very familiar with DES exposure and its ramifications, but she said she’d take the materials I’d provided because some members of their nursing staff may need to be educated. 

Because I’ve never had the special, more-comprehensive pap smear necessary for DES Daughters, having just confirmed my DES Daughter status six weeks ago, Dr. H said that the one of the doctors in the practice would perform the exam at my next appointment.

My IVF clinic had faxed the results of my two previous ultrasounds, and my former gynecologist had faxed the results of my colposcopy and LEEP, both performed in summer 2003.

Dr. H asked for the contact information for each of my doctors, so she could consult with all, my primary-care physician, who is my gynecologist, the reproductive endocrinologist and genetic counselor at the IVF clinic, and my psychiatrist.  I was very impressed with her thoroughness.

She then laid out the facts. 

With my twin pregnancy, three outcomes are possible:

1. Both babies will die.
2. One will live, with the other dying.
3. Both babies will live.

She said that my uterine bleeding is not a concern if it is my only symptom.  However, because of my Rh- status, she said, if the bleeding worsens or continues, as is, for days, I will need a shot of RhoGAM® to ensure that my body doesn’t start rejecting the twins, if one or both are Rh+ like their father.

She explained that it is rare for twins to be of differing sizes so early in a pregnancy, that such differentiation usually happens later, when the uterus is filled to capacity, with one twin having a better blood supply.

But, she said, the sizes of my twins, based on the ultrasound measurements, are very similar: .54cm for Baby A and .46cm for Baby B.  She said this differentiation could simply be the result of the ultrasound technician being a bit off with her measurements, so difficult to gauge with such tiny embryos.

But, she explained, “Because your uterus is abnormal…”  Then she stopped herself and said, “I don’t mean to call it abnormal, but…”

I’m well aware that it’s abnormal, so, around me, there is no need to pussyfoot around the issue.

She continued that, because of my uterine abnormality, its blood supply may not be able to sustain two babies.

And, with that statement, any hope for peace of mind vanished.  As my twins get bigger, their needs will increase along with their size.  And, perhaps, at some point, my DES-induced, deformed uterus will not be able to provide one or both with the blood supply necessary to survive.

This is where I want every single pharmaceutical representative, every single researcher, every single salesperson, every single doctor who knew the risks of prescribing DES to pregnant woman to have to live what I’m living, because only then will they know the damage they’ve done, both physically and psychologically.

Dr. H suggested that I meet with a nutritionist because these twins of mine are “parasites” who will take everything they can from me, so I need to make sure I’m eating well enough for all three of us to thrive.  I understand her point, but I hated hearing them called parasites.  “Parasite” is such a negative term. 

In closing, she went over the practice’s “Maternal Age Chart for Twins at Amniocentesis,” stating that she would follow up with our genetic counselor to learn exactly the chromosomal abnormalities for which our embryos were tested.   She then walked through the document, “Management Protocol for Twin Gestation,” to give me an idea of what treatment to expect throughout the pregnancy.  She said, while the goal is to deliver at between 38 and 40 weeks’ gestation, twins are normally born at 35 weeks, which, for me, is near the end of March.

In closing, she told to make an appointment in two weeks for a meeting with the nurses, in which they will go over everything I need to know about the practice, plus I can hear fetal heart tones, then another appointment one week later in which I will meet with a doctor to have a physical exam, including my DES Daughter pap smear, plus hear fetal heart tones again.

I walked out feeling relieved that both babies are alive, that they’re still growing, that the source of my spotting has been identified and is not affecting the twins.  But, I had thought that, because my uterus is larger than ever before, because my uterine lining is the thickest it’s ever been, because I’d been able to successfully carry my 9½-pound son to term, that I could also successfully carry these surprise twins of ours.   And, maybe I can.  Hopefully I can. 

What I learned is, just like when I was pregnant with my son, I have to take every day as it comes, every positive appointment as a mini-triumph, every additional week that I’m pregnant as miraculous. 

And, because stress will not help me or my sons, I have to let go, to give this pregnancy up to God. 

That, and take my Prozac every day and never miss an appointment with my psychiatrist…

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.

Needle for subcutaneous injections (top) vs. needle for intermuscular injections (bottom)

In vitro fertilization (IVF) cycles require self-injecting of multiple medications, including those designed to stimulate the development of multiple eggs, to stall ovulation while these eggs are growing, and to control the timing of ovulation.  During my two IVF cycles this summer, all of my injections were subcutaneous, meaning they just had to be inserted under the skin.  While my subcutaneous injections caused stinging and bruising on my stomach, their side effects were minor compared to those of the intermuscular injections I’ve been receiving for the past five days.  My advice:  Avoid the thighs at all costs.

Last Wednesday, I learned that I am pregnant with twins; however Baby B’s gestational sac is “considerably smaller” than Baby A’s, plus is separating from my uterine lining.  In an attempt not only to rectify what may be an implantation problem with Baby B, but also to save Baby A from a potential joint miscarriage, my reproductive endocrinologist directed me to start intermuscular injections of progesterone oil, which should thicken my uterine lining.

The IVF coordinator outlined that these injections have to be done in either of my thighs or my “buttocks.”  Deeming it impossible to stick a 22-gauge, 1.5-inch needle into my backside, I did my first injection in my right thigh.  I couldn’t get the needle all of the way into the muscle, so I just did the best I could, making sure that all of the progesterone oil was injected. 

I was so sore the next day that I could barely walk.  If I stood for a few minutes, my leg would give out.  So I spent my day on the couch, with my 4-year-old trying to be chivalrous by putting his arms around me “to help me walk” whenever I had no choice but to get up and limp around.

I am a do-it-yourself kind of girl, but I knew I needed help.  If I kept self-injecting, I’d have no choice but to continue giving myself my shots in my thighs, but, if I rotated the injection site each day, as directed, I’d have to move from right thigh to left to right to left, making myself an invalid.

Now, not everyone is comfortable giving injections to another person, and I’m not comfortable with just anyone giving me shots in my ever-growing rear-end.  But, my friend and neighbor Kristy has been through two IVF cycles herself, and she’s a close friend whom I knew wouldn’t judge me by my ass size, so, even though it’s hard for me to ask for help, I gave her a call.

Rock-star that she is, she came on over to give me my injection on Thursday afternoon, but, when she saw the needle, she said, “There is no way that this can go into your body!”

I told her we had no choice, so she pinched more than an inch of my skin and did her duty.  I wasn’t sore at all afterward, so the buttocks it is. 

Kristy did Friday’s injection too, which was a bit sore afterwards, but I didn’t want her to have to be on call for me every afternoon, so on Saturday and Sunday I enlisted my sweet husband.  One of my stepsons has juvenile diabetes, so my husband is experienced on the injection front.  But, my stepson’s needles are subcutaneous, just like my previous ones, so my husband did a double take when he saw the super-sized one. 

“This needle is ridiculous,” he said. 

I squeezed my own more than an inch for him, then stopped him when he was about to jab the needle into me. 

“Sweetie, you don’t need to stab me.  The needle is sharp enough to slide in, so just go slow.  I know it doesn’t seem like it will work, but it will.”

He did it, then collapsed on the couch, overwhelmed by the task.

Yesterday, he did the same, exclaiming, “That needle is incredible.  It doesn’t look like it would even go into your body.”

“You see how dedicated I am,” I responded.

I am so dedicated to this pregnancy, to trying to help Baby B successfully implant, to attempting to save Baby A no matter what, that here I sit, with my six-day-sore right thigh, plus my two sore sides of my “tush,” as my son calls it.  

But, the sore thigh was completely unnecessary, so anyone who has to do intermuscular injections, don’t be a self-injecting hero.  Simply ask for help upfront.  And, if you live in Chicago, I’m happy to be your girl…

Today, it is rainy for the third straight day, so I felt justified to stay in the house with my 4-year-old son.  We got a new, cheaper cable system yesterday, so we spent all day today in either bed or on our couches, watching the kids’ movies The Iron Giant and Zathura, then taking a nap.  Well, I took a two-hour nap, and he “rested” beside me until he couldn’t take the boredom anymore. 

After he announced that he had to get up, because he “absolutely, positively was not tired,” I said I needed to sleep longer.  He said he’d go to play, then sweetly shut the bedroom door behind him to make the room dark again.

In Zathura, one of the main little-boy characters gets to wish on a shooting star—twice. 

About 20 minutes ago, my son came in to still-sleeping me, and he asked, “Ma, do you know what I wished on a shooting star?”

“What?”

“That you would wake up—every day.”

Oh, the guilt…

My son’s sweet response was, “Mama, what’s up with the ‘beautifulness’ today?”    

He made me feel like a supermodel.

After the party, he was exhausted because he’d jumped around in an inflatable castle for almost two hours, and I was exhausted because I’m 41 and pregnant, so we napped side by side.  As a very “big boy” these days, he rarely naps, so I cherished the rare opportunity to snuggle next to him as we slept.  I’ve always said that holding a newborn is like Valium to me.  I’ve never taken Valium, but it’s supposed to have very relaxing effects.  And, even though my son is now 45 pounds, cuddling with him still calms me.

Last night, after my son and I had showered and put on our pajamas, I got a call from my next-door neighbor Anna Marie that she had a Dairy Queen Blizzard in her freezer, waiting for me.  I had a sore throat, because I’m beyond run down, and, although I’ve been complaining about my pre-pregnancy weight gain, I’m now eating for two—or maybe three.  So I called over, and her husband Dan answered, “Dairy Queen!” then announced that he’d be right over.  So not only did my sweet friends surprise me with my favorite flavor—vanilla ice cream with Reese’s Peanut Butter cups—but also gave me door-to-door service.  I am spoiled, spoiled, spoiled.

Well, as anyone reading my posts knows, I’ve been a complete freak show , but yesterday’s combination of my sweet, snuggly son, my thoughtful friends and the super-delicious Dairy Queen Blizzard put me in the most peaceful, Zen mood for the first time in days … months … well, a very long time. 

And, even though I have my ultrasound this morning, in which I’ll find out if I’m carrying one or two baby boys, in which I’ll find out if one or both of them have implanted where they’re supposed to, I slept peacefully for four hours, from 9 p.m. until 1 a.m. 

And, although I’m a lifelong insomniac who is now up in the wee hours (it’s now 1:47 a.m.), I am still feeling positive, as if everything that the ultrasound will reveal will be “what is meant to be.” 

Forgive me for the cliché: I’m not at my creative best at 2 a.m.

I’ve been having sharp stomach pains since my embryo transfer, and last week I started to worry that I have an ectopic pregnancy, so not only will I not have a child, but also will lose a fallopian tube.  Then I started thinking rationally, when talking with a very rational friend who is a good influence on me, that having done in vitro fertilization (IVF), in which two embryos were transferred directly into my uterus, an ectopic pregnancy might be impossible.  After all, no sperm had traveled up my tubes to fertilize the egg in my ovaries, no embryos had needed to travel down my tubes to implant in my uterus.  All of this took place in a petri dish of some sort.  But, then I did an Internet search, and I learned that in 2-5% of IVF pregnancies, the embryo does implant in a tube, rather than in the uterus.  Some embryos do travel out of the wombs in which they were carefully placed, to the completely inhospitable fallopian tubes, where they can’t survive—and can also kill their mothers.

I have tried to will myself to be calm until Wednesday morning, when I have a 7:30 a.m. ultrasound appointment, and all will be revealed—whether I’m pregnant with one or two sons, whether one or both of them were too antsy to stay in my uterus and took off on adventures into my tube(s) instead.  But, I can’t do it.  Instead, I can’t sleep; I am sick to my stomach; I have canker sores in my mouth.  I’m already taking Prozac, and I still can’t calm down.  So then I worry that my body is such a nightmarish home for these embryos that they’ll try to eject, so they can have some peace.

I want both of these boys, both of my sons, which might seem irrational, considering that I’m 41, my husband is 43 ½, and we already have three sons, my stepsons, ages 15 and 13, and our son, age 4 1/2.  I didn’t start the IVF process wanting two more children, just one.  But, now that they’re both inside of me, now that my Human Chorionic Gonadotropin (HCG) pregnancy hormone levels have been so high that they both may have implanted, I am attached to both.  I’m thinking that the first two or three years of their lives will be brutal for me, but then they’ll always have each other to play with, to love, and my son and stepsons will have not just one, but two, younger brothers to adore them. 

I think about the holidays of the future, and how full they will be with twins added to our family.  Now, we have my stepsons every other Thanksgiving, so every other year, our family of three celebrates.  And, for the Christmas holidays, my favorite holidays, we have my stepsons only until 8 p.m. on Christmas Eve, when they have to be returned to their mother’s, so Christmas morning, I futilely try to spread out the small number of presents from Santa, presents just for our 4 ½-year-old, so it doesn’t look so bare under the tree.

I think about how much love will be in our home, how much joy, and, yes, how much chaos.  But, I grew up with four younger brothers, so it will be chaos that I am used to.

Then I worry about my sweet husband, who was content with our three children.  I think about how, because he was so terrified of multiples, I originally promised him that we would transfer only one embryo in the first IVF cycle, only one in the second IVF cycle, then two for our third and final attempt.  But, our chances of having a child were so low with only one embryo put in, only 10-15%. 

Plus, the side effects of the IVF medications were much worse than I’d expected, so, after my first, unsuccessful cycle, I questioned whether I could even go through the process three times. 

So, after our baby-girl embryo didn’t implant in our first cycle, even though she was strong and healthy, even though my too-small T-shaped uterus is now a slightly larger arcuate one, even though my uterine lining was the thickest it has ever been, I decided that it was idiotic to have transferred only one embryo.  No one with more than one viable embryo transfers just one, because it decreases the odds of success by half, to a failure rate of 85-90%.  And, I know couple after couple who transferred two embryos, which resulted in the birth of one child each time.

So I talked to my husband, and we agreed that we’d change our original plan and transfer two embryos, if we had two, during our second cycle, which meant that we’d have a 20-30% chance of having one child—still a 70-80% chance of failure.  Considering how difficult it is for me to have successful implantation, with seven intrauterine inseminations six years ago, when I was 35, and one unsuccessful  IVF cycle in May/June, already under my belt, it seemed the reasonable decision.  But, it was our reasonable decision in our attempt to have one more child.  So, if we have twins, which will put my husband under more financial pressure, he may never be able to reconcile the joy that our twin boys will bring with the financial stress they will add to our lives.  He will love them, he will be a wonderful father to them, but he, who already works 13 hours a day, will suffer considerable anxiety as a result of providing for them.

So, I need to become a best-selling author ASAP.  Now, how can I can get in touch with Oprah?

I had my blood drawn for my pregnancy test at 8:45 a.m. this morning, and the nurse told me that I will get a call with the results by 1 p.m.  I already know I’m pregnant because (1) I didn’t get my period on Saturday, as I should have, if this in vitro fertilization (IVF) cycle didn’t work; (2) I didn’t get my period yesterday either—or yet today; (3) starting Thursday night I noticed the bright-blue veins splayed across my chest and breasts (and, while I’ve been ignoring my breast swelling and tenderness because both could be due to my three-times-daily Endometrin® progesterone suppositories, the prominent veins are not a side effect of progesterone); (4) I am exhausted; and (5) I am a hormonal mess who just got into an argument with my mother-in-law, who responded that I’m being “sensitive and thin-skinned.”  And, I probably am.

It’s now 12:11 p.m., and I don’t know how I’m going to be able to wait another up to 49 minutes to get the call.  And, it’s because knowing that I’m pregnant means little to me, because I’ve lost so many babies due to implantation problems.  So, I am desperate to know my level of Human Chorionic Gonadotropin (HCG), the pregnancy hormone, so I will have an idea if this pregnancy seems viable.

The Best Buy Geek Squad technician just showed up, and walking him through our computer problems just killed 16 minutes, so now it’s 12:27 p.m.

I asked the nurse this morning if the IVF coordinator, the one who will call me, will be able to tell if I’m carrying just one baby boy or twins.  She said that, depending on my HCG level, they may “suspect” that two embryos are growing inside of me, but it won’t be until my ultrasound next week that they can know definitively—after they’ve seen one or two gestational sacs.

I’ll post again after I know my pregnancy test results—and have the opportunity to share them with my sweet husband, who said that he can’t wait for them until he gets home from work, that I have to call him to tell him by phone.

12:37 p.m.  Torture, torture, torture…