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…

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.

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.