How My DES Exposure Has Affected Me So Far, Part 2: Infertility and High-Risk Pregnancy

In my post “How My DES Exposure Has Affected Me So Far, Part 1,” I outlined how my exposure, in utero, to the synthetic estrogen drug diethylstilbestrol (DES) created my abnormally shaped vagina, which has an extra ridge of skin, and also shortened my menstrual cycle to 20 days, rather than the normal 28, which results in too-thin uterine lining, making embryo implantation difficult.  Today, I’ll discuss how my T-shaped uterus, a direct result of DES exposure, has affected my fertility.

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

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

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

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

Normal Uterus vs My T-shaped Uterus

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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