Me, a Post-Partum Mess, Post C-Section

Abandoning my blog for nearly three months post-partum wasn’t part of my master plan. In fact, when answering e-mailed interview questions posed by Fran Howell, executive director of DES Action USA, in January, I responded to her question, “Will you continue to write after your son is born? How will you find the time???” with the following:

“Yes, I will continue to write after my son is born. It has become a daily ritual, a habit that I am dedicated to continuing. I’ve realized that, previously, my excuse that I didn’t have time to write was simply a manifestation of my fear of failing…”

I’ve barely written in three months, to the point where I couldn’t even complete a blog post, so I feel naïve and guilty. But rather than wallow in those feelings, as would previously have been my natural response, I need only to hold my newborn son—and every negative thought leaves me. I’ve never taken Valium, but that’s how I compare my reaction to having him: He alleviates all tension, all stress, making me Zen.

After going through two cycles of in vitro fertilization (IVF), losing his twin, suffering from placenta previa, and surviving multiple bleeds, four hospitalizations and bed rest, I gave birth to my completely healthy son at full term, 37½ weeks. I am so relieved and thankful that, when I saw my psychiatrist five weeks after he was born, she said at the end of the session, “Well, there’s no reason for you to be rushing back here.”

But I am so tired, due to having a newborn at the tail-end of age 41; being completely out of shape, having gained 67 pounds and been on bed rest since January 13; and having a C-section, which became infected, which, according to my team of high-risk doctors, “just happens sometimes.”

Being so exhausted makes me feel overwhelmed not because of my duties as mom, which I revel in, but because of the pile-ups around me. Literally pile-ups. I’ve started recording and watching the A&E television show Hoarders for inspiration, because I had to let things go, while enduring IVF, a high-risk pregnancy and then bed rest, and now sorting through the paperwork, the clothes, and the closets seems impossible. The individuals featured on Hoarders are worse off than I am—with some having long-dead animals crushed underneath the floor-to-ceiling clutter in their homes—which makes my clean, yet disorganized house seem more manageable.

Shortly after recovering from my C-section, my 5-year-old and I were watching Hoarders, when he announced, “Mama, my closet is a hoarder.” I had shoved every baby item given to me by friends into the closet in his bedroom, which he and my newborn share, to get them out of the way until I could sort through them and put them away.

Due to the wake-up call that my son thinks his closet is hoarding things, I have given up my loves—writing and jewelry making—in the short-term as I handle the necessities—being a mom and trying to get my home in order. I’ve gone through all the closets. I’ve sorted through my own and my four sons’ clothes, organizing those they’ve outgrown in bins labeled by sizes, for not-too-worn items will be passed from our 16-year-old to our 14-year-old to our 5-year-old to our newborn. I’ve reorganized most of the basement. I’ve given dozens of items to charity, even things I love but rarely use.

I’ve made great progress, yet today I felt incredibly paralyzed by how much I still have to address. But as things piled up in my home, I made a baby. And when he and I were at risk, I listened to my doctors and stayed put on the couch and/or in bed. I had my priorities straight, so he and I are healthy and happy.

Well, I’m still 26 pounds overweight and incredibly out of shape, but I’m on my way to healthy.

And I am so incredibly happy.

Tired But Happy Mama with the Reason She's Tired and Happy

I was first hospitalized on Wednesday, January 13, when I was 25 weeks into my pregnancy, because of pre-term bleeding resulting from placenta previa.  Dr. O, one of my doctors, released me on Sunday, January 17, 48 hours after my last bleeding episode, directing me to be on full bed rest at home, but to immediately contact my high-risk pregnancy practice if any of the following occurred: 

1. An increase in baseline frequency of contractions
2. Greater than 4 contractions per hour, not responsive to 1-2 hours of rest and hydration
3. New backache
4. Increased vaginal discharge
5. Leakage of fluid
6. Vaginal bleeding
7. Cramping
8. Pelvic pressure or feeling of fullness

I have been diligently on bed rest—and, since Friday, January 15, a non-bleeder.  But, this morning, at the tail-end of a visit from my friend Heidi and her son, I went to the bathroom and found “increased vaginal discharge,” #4 on the above list, and, based on its brown color and consistency, I thought part of my placenta had fallen out of me. 

I didn’t come up with this scenario on my own.  I know a woman who had placenta previa, who lost half—yes, half—of her placenta in the same way, resulting in her doctors telling her that her son would be brain-damaged due to the reduced nutrients and oxygen he was receiving from the remaining half.  He turned out just fine; in fact, he’s brilliant, rather than brain-damaged.  But, because of her story, and because of the type of vaginal discharge I discovered, I put two-and-two together and thought the same was possibly happening to me. 

Regardless, “increased vaginal discharge” is “increased vaginal discharge,” so I called my practice, one of the nurses talked to the doctor on call, and I was told to go to labor-and-delivery for monitoring.

I called my friend Heidi, because I’d promised I’d touch base after hearing from the doctor, and she offered to drive me to the hospital.

I packed up my belongings in case I was in for yet-another multi-day hospital stay. 

I packed up my nearly 5-year-old son’s belongings in case he had to spend the night with friends.

I called my son’s preschool teacher to prepare her for his arrival, because he knew I was returning to the hospital and briefly cried, asking how many days I would be gone this time. 

I called my friend Yana and made the arrangements for her to take my son after school and overnight, if I wasn’t released in time. 

And, Heidi and I were off.  

I’d assumed she would just drop me off at the hospital, but she said she was going to stay with me, that our friend Kristy was watching her two kids to free her up.  I warned her, “You might be in for more than you can handle,” but she said she’d be fine.

I checked in at labor-and-delivery, and, as the nurse in my practice had promised, the staff was waiting for me.  Katie, my nurse from my last visit, was my nurse once again.  She brought us up into a room, handed me a hospital gown and a one-foot-high elastic band to wear around my waist, and, after I changed, found my son’s heartbeat with the fetal monitors, which she placed underneath the elastic band, so they’d stay in place.

Heidi was sitting in a chair across from my bed, as Katie said that the doctor would conduct a vaginal examination with a speculum to see if she saw any blood or cervical dilation. 

I looked at Heidi and said, “I don’t think you’re going to want to be sitting there.”  She laughed, agreeing, and moved to the chair next to my bed.

Dr. H, the doctor in my practice who was on call, was in the middle of a C-section, so another labor-and-delivery doctor came in to do my exam. 

Sitting next to me, rather than across from me, Heidi would no longer have the same, unobstructed, well-lit view of my nether region as the doctor, but I still had to be naked from the waist down, providing quite the show.

Heidi reassured me, promising to focus on her iPhone®, so she wouldn’t see anything, which I appreciated, saying, “I have gotten to the point where I don’t care who examines me, but I don’t want my friends to see my vagina.”

The doctor, whose name I can’t remember, said she saw no blood, and my cervix still looks closed.  I’d brought my “increased vaginal discharge” with me in a small plastic baggie, so the doctor could examine it too.  She said it looked like mucus and that it was so discolored—brown instead of clearish—because it has soaked up the leftover blood in my uterus.

She said I was right to call, but that everything is fine, so, after checking with Dr. H, who was finishing up that C-section, she released me back to my life of full bed rest at home.

I was only away from home for an hour and a half. 

When I walked in my door, with Heidi following me with my mini suitcase and briefcase, because I’m not allowed to lift anything, I hugged her tight.  I can’t express how much I appreciate her staying with me. 

After she left, I called my son’s teacher and asked her to tell him that I was fine and already at home.  I called my friend Yana to tell her that she didn’t need to watch my son after all.  I called Fran Howell, executive director of DES Action USA, who’d left a message for me while I was at the hospital. 

And, then I couldn’t keep my eyes open.  I was so emotionally and physically drained from those two hours of fear that I dozed on and off for three hours, while my son, when he got home from school, watched TV next to me.

I am so relieved that my baby and I are fine, considering I am only 27 weeks into this pregnancy.  I am so relieved to be back home.  But, it’s going to take me a few days to recover from this…

It’s hard to ask my husband to run up to 7-Eleven to grab a gallon of milk, even though he’s happy to do it.

It’s hard to ask my nearly 5-year-old son to shove all of the clothes down the laundry chute because I’m not supposed to do anything but lounge around, except when I take my once-daily shower and use the bathroom.

It’s hard to have my husband take my son to his doctor’s appointment and his weekend birthday parties.

It’s hard to have my friend take my son to his weekly soccer class.

Because while I am so thankful for all of the help I’m receiving, I would like to live my own life, to run my own errands, to participate in my son’s activities.

Now, I experience life vicariously.  I sit here at home all day, every day, and I miss what my life, though hectic, used to be like.

I remember friends who, when they were brand-new moms, revealed to me how they felt so isolated all day at home with their newborns, how they were so desperate for any conversation, they would pounce the moment their husbands walked through their front doors at night.

Now that’s me.

When my son comes home, I ask him:

“How was soccer?”

“How was your playdate?”

“What did you eat for lunch?”

“How was school today?”

“What did you work on at school?”

“Did you play outside on the playground?”

“What were you doing when your teacher said you were goofing around?”

I ask until, exasperated, he’ll ask me, “Do I still have to talk?”

Having heard my son’s recitation of his day, I let my husband get off easy, with a simple, “How was your day?” or “How did your conference call go?”

When I’m home alone, I am staying amazingly busy.  I refuse to watch television.  I don’t expend any physical energy, so, not tired, I don’t nap.  I’m sorting through paperwork, throwing nonessentials away and filing the rest.  I’ve written the book that will be the fundraiser for my son’s preschool class.  I’ve revised and updated the book proposal for my memoir.  I’ve responded to requests for interviews for DES Action USA’s newsletter and a feature story on infertility.

I’m trying to view my time on bed rest as an opportunity to accomplish certain goals, rather than a burden.  But, I still miss basic freedom.  I still miss participating fully in life with my family.

But, who wouldn’t?

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.

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.

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.

I launched this website on Monday, July 13, and, the following week, I searched the Internet to see if my site popped up when I input varying search terms, related to my content.  The first I typed in was “T-shaped uterus.”  While scrolling down page after page, I didn’t find my site; however, I did come across the website of DES Action USA, a nonprofit organization that provides support, information and advocacy for individuals affected by exposure to the synthetic estrogen drug diethylstilbestrol (DES).  The website is www.desaction.org.

Under the tab DES Daughters, defined as “women whose mothers were given DES while pregnant with them,” the following risks are listed:  clear cell adenocarcinoma—cancer—of the vagina and cervix; breast cancer; structural changes of the reproductive tract, including the vagina, cervix, uterus, fallopian tubes and ovaries; having a T-shaped uterus, which increases the likelihood of incompetent cervix, which can result in pregnancy loss and pre-term delivery; infertility; ectopic pregnancy; preeclampsia; endometriosis; uterine fibroids; paraovarian cysts; and early menopause.

When I was 20, I saw a new gynecologist who took one look at my private parts, then asked if my mother had any trouble getting pregnant.  I said no, that I was conceived three months after my parents were married.  She said that my vagina was “different from everyone else’s” and that it could be a result of my mother having taken medication while she was pregnant with me.  I discounted it, because my mother hadn’t had trouble conceiving and because the doctor never mentioned any other risks that I should be aware of.  And, I had the self-esteem of a garden slug at the time, so I lacked the confidence to advocate for myself, to ask questions.  I didn’t even have the nerve to ask her what was wrong with my vagina, what about it was “different from everyone else’s.”  I waited a whole year, paranoid, wondering in what way or ways my vagina was freakish, until my next annual exam, where I finally asked specifically what was wrong.  She explained that I have an extra flap of skin, but not to worry about it.  She said that just like people have different shaped noses, all of which serve their function, my misshapen vagina, while “different,” was fully operational.

Fifteen years later, after not successfully conceiving during four IUIs, my doctor performed the HSG that showed my T-shaped uterus, one-third normal size, because, as she explained, it never developed fully while I was in utero.  When I researched the T-shaped uterus and its ramifications online, I found a website that said that .01% of women have uterine abnormalities, and there are seven different kinds, one of which is the T-shaped variety.  And, my doctor told me that I had the only kind that “can’t be fixed.”

So, not only did I have the extraordinarily rare T-shaped uterus, but also the double whammy of abnormal vagina and underdeveloped uterus.  (Because my son stretched out my uterus during his nine months in it, my uterus is no longer T-shaped, but now arcuate.  In short, it’s still small and abnormally shaped, but now less so.)

The DES Action website information made me pretty confident that I am a DES Daughter, but what was most upsetting to me was the revelation that DES exposure can affect the third generation, as in my four-year-old son and my future son(s), if this IVF cycle is successful.  (I had two boy embryos transferred into my uterus last Thursday, August 6.)  Eager to gather as much information as I could, I immediately mailed an order form and check to DES Action for the book DES Voices: From Anger to Action.

A few days later, DES Action’s Executive Director Fran Howell e-mailed me, offering to put together a packet of information, if I would let her know of any specific DES interests and needs.

I responded, “I believe I was exposed to DES because I have a T-shaped uterus and abnormally shaped vagina.  My mother has no memory of taking anything during her pregnancy, and I’ll be 41 tomorrow, so medical records likely don’t exist anymore.  But, I have a 4-year-old son and am going through IVF trying to have another child, and the information on your site is the first I’ve ever seen of DES exposure affecting grandchildren.  So, anything you can send about DES infertility, cancers and DES grandchild issues would be great. Thanks much.”

She replied, “First, it is highly unlikely you’d be able to get your mother’s medical records. I am not kidding when I tell you how many ‘fires and floods’ afflicted medical offices when DES Daughters requested records.  There is no real marker for DES exposure.  A T-shaped uterus is the closest there is. That abnormal shape does not appear in nature and was not documented as occurring before DES was given to pregnant women. Not all DES Daughters have it, but those who do are considered to be DES Daughters. (Dose and timing of exposure affect what problems were caused by the drug).”

I received Fran’s packet of information a few days later and was disturbed by a newsletter article about the link between Clomid® and uterine cancer.  I took Clomid during two of my IUI cycles. 

I reacted to an article titled, “DES Daughters at Increased Breast Cancer Risk after Age 40,” by scheduling a mammogram two days prior to my embryo transfer, knowing that, if I’m pregnant, I can’t be exposed to radiation for nine months. (I got my mammogram results yesterday, and they were normal, thank God.)

I received the book, DES Voices, the day of my IVF embryo transfer, a day I was supposed to rest, and I’d finished it by 4 a.m. the following morning.  In the past few days, I’ve also read three other books about DES and the results of exposure to it.   The most recent, just released, is what i thought i knew, a fantastic memoir by Alice Eve Cohen.

What I’ve learned is that U.S. companies didn’t adequately study the synthetic estrogen DES, which was created in 1938, and the research that was done showed cancer and reproductive abnormalities in mice and other animals.  Yet hundreds of companies distributed DES under hundreds of different brand names until it was “contraindicated for use in pregnant patients” in the United States in 1972.  It was used elsewhere even in the 1980s. 

DES was considered a wonder drug, even though no research backed up those claims.  It was given to women who had prior miscarriages.  It was given to women with no pregnancy problems, so that they would have “big, healthy babies.”  It was put into prenatal vitamins, making women unaware they were taking DES at all. 

It didn’t prevent miscarriage.  It provided no benefits to pregnant women or their offspring whatsoever.  What it did do is increase the breast cancer risk of the women who took it by 30%.  It passed through the placenta into these mothers’ sons and daughters, forever changing the development of their bodies, creating numerous abnormalities that have resulted in shame, infertility, cancer, and death. 

I am a DES Daughter.  And, I will do everything I can to protect myself; my mother; the two of my four brothers who may have been exposed; my nephew and nieces who might be DES grandchildren; my son, a DES grandson; and my future son(s), if I am pregnant now.  (My pregnancy test is next Monday, August 17.)

To learn more about DES, you can click on the links for DES Action USA, The DES Cancer Network, and the Centers for Disease Prevention and Control’s DES Update, all of which are listed on the right side of this Home Page, under DES Links.

NOTE:  This post was reviewed for accuracy by Fran Howell, Executive Director of DES Action USA.  My sincere thanks to Fran.