Health

Women With These Uterus Problems Often Don't Find Out Until They Get Pregnant

It can take miscarriages or preterm labor for people to learn there's even an issue with the organ.
Pregnant woman getting an ultrasound
 Suprijono Suharjoto/Stocky

My partner and I had been dating for ten months when I found out I was pregnant. We felt a mixture of fear and excitement about the prospect of having a baby. During the first ultrasound at the OB/GYN’s office, the doctor told me I was eight weeks along, but when he sighed, I knew something was wrong.

“I’m not seeing a heartbeat,” he said. I had miscarried.

After I got dressed, my partner and I had a long conversation with the doctor. He explained that, according to the ultrasound, it looked as if I had a misshapen uterus. His recommendation was to see a reproductive endocrinologist—a doctor who specializes in infertility.

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Two months later, I visited a reproductive endocrinologist who confirmed that I had a septate uterus. Although the outer wall of my uterus was shaped like the typical upside-down pear, I had a fibrous band of tissue (a septum) halfway down the middle, instead of a spacious interior where a baby could grow. The doctor said it was possible that the septum led to my miscarriage.

How could a septum cause a miscarriage? A newly fertilized egg needs to implant in the lining of the uterus to grow. However, if an embryo embeds itself on the membrane dividing the womb, it may not receive enough blood flow to develop properly.

A septate uterus is one of several possible congenital anomalies of the organ, meaning they happen during fetal development and are present at birth. It’s not known how many women have uterine anomalies because there’s no standard screening process to detect them, according to Scott Sullivan, an OB/GYN and director of the maternal-fetal medicine division at the Medical University of South Carolina. “The estimates [for uterine anomalies] I've seen have ranged anywhere from one in a thousand to one in two hundred,” Sullivan tells me.

There are often no symptoms so people don’t usually find out they have an atypically shaped uterus until after they’ve had multiple miscarriages, gone into preterm labor, or when they get an imaging procedure like an ultrasound.

And septums in particular can lead to recurrent pregnancy losses, Sullivan says.

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To understand how a septum might grow inside a uterus, you’d need to know how the organ forms during fetal development. The uterus starts as two small tubes called Müllerian ducts, and there’s a right tube and a left tube. As the fetus grows, the two tubes merge together. If the uterus is fully formed, the central part of it known as the corpus should be hollow and pear-shaped. In addition, there should be one cervix below the uterus that opens into the vagina. Sometimes, this fusion is disrupted, and that’s when uterine anomalies happen. “It does not appear to be [caused by] genetics,” Sullivan says. “We say it’s bad luck, which is another way of saying we don't know.”

A septate uterus is one of five different types of congenital uterine anomalies. It happens when the fusion of the Müllerian ducts is interrupted halfway through, making the interior of the uterus almost heart-shaped. An arcuate uterus is when the fusion of the Müllerian ducts is almost complete, but there’s a slight indentation at the top of the uterus—it’s like a mild septate uterus.

When a Müllerian duct on one side doesn’t fully develop or never develops, resulting in only one fallopian tube, it’s called a unicornuate uterus. A bicornuate uterus occurs when the ducts are partially fused together, forming a heart-shaped exterior and a dip at the top. Lastly, a didelphys uterus is when the Müllerian ducts don’t start the fusion process, leading to a double uterus, possibly with two cervixes. Worth noting: Doctors generally don’t recommend IUDs for birth control for anyone with an anomaly that distorts the uterine cavity.

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The most common types of uterine anomalies are septate uterus and bicornuate uterus, according to the Columbia University Irving Medical Center. And Sullivan says that, out of the five types of uterine anomalies, arcuate uteruses are least likely to cause complications in pregnancy. (Sullivan points out that there’s a “cousin” of these uterine anomalies called Mayer-Rokitansky-Küster-Hauser syndrome, or MRKH, which he describes as “the failure of the upper vagina and uterus to develop at all.”)

Judi Santana, a 37-year-old events marketing manager from New York, thought she had a bicornuate uterus from an ultrasound done when she was younger. She didn’t find out she actually had a didelphys uterus with two cervixes until she was pregnant with her first child.

With her first child, she went into labor at 20 weeks and was put on bed rest to prevent delivering her baby. Santana ended up delivering at 26 weeks after her placenta detached from the wall of her uterus. Her daughter was in the newborn intensive care unit (NICU) for ten weeks, and is now a healthy 12-year-old who dances competitively. Santana now gets two Pap smears (one for each cervix), instead of one.

She’s since had two more children. “Before we got pregnant with my second…I was like, ‘I'm not doing it,’” she tells me. “But somewhere right after [Santana’s first child] turned four, something clicked in me and I was like, ‘alright, I'm ready to try this again.’” Santana managed to carry her second child until 34 weeks, and her third until 36 weeks.

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Early labor isn’t uncommon when women with uterine anomalies like Santana try to have children. According to one study, only around 45 percent of pregnancies in a unicornuate or didelphys uterus deliver at term (39 weeks or more of gestation), and only about 40 percent of pregnancies in a bicornuate or septate uterus deliver at term.

Sullivan tells me to think of carrying a baby in a unicornuate or bicornuate uterus as like being pregnant with twins in terms of the space limitations. “[The uterus is] really pulled,” he says. “It's challenged…to grow and to accommodate [the fetus].”

Erika Thompson, from Colorado, didn’t learn about her uterine anomaly until years after her second child was born. Her first child was born on his due date, but her second was 11 weeks early. “The doctors had no idea why she came early,” she tells me.

Three years later, only when Thompson had an ultrasound to rule out cysts, did she find out she had a bicornuate uterus, which likely explains why she gave birth to her second child pre-term.

There are procedures that can correct these anomalies, though some are more invasive than others. Sullivan says a bicornuate uterus is the most difficult to surgically correct. “You can take a bicornuate uterus and try to make one uterus out of it, it’s called a metroplasty. It is a complex surgery and not everyone is a candidate because…not everyone has two equal halves and is amenable to surgery.” It can be done through an abdominal incision or with laparoscopy (a procedure involving several smaller incisions and a camera).

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According to Sullivan, a septate uterus is usually corrected with a minimally invasive procedure with no incisions that typically has a shorter recovery time. Shortly after my first miscarriage, I had a hysteroscopic metroplasty, a procedure to resect or remove the extra tissue down the center of my uterus, with the goal of making the interior pear-shaped, so that a baby had more room to grow. It involved inserting a small flexible tube (a resectoscope) through the cervix and into the womb; the tube had a camera and an instrument known as a Collings Knife used to burn the unnecessary tissue.

My uterus has some remaining tissue down the middle, it’s just not as conspicuous. There’s still a possibility that a fertilized egg could land on that tissue, and result in a miscarriage. I’ve since had two children, and though I miscarried between my first born and second, it’s unclear whether it was caused by the remaining bit of septum.

After that procedure, whenever I got pregnant, my OB/GYN would direct me to the lab for bloodwork to make sure my HCG levels (human chorionic gonadotropin) were doubling as expected, which suggests that the fetus was developing normally and didn’t embed on the septum tissue. This caused a lot of anxiety in the early stages of pregnancy, and now that I’m not planning on having any more children, I’m relieved that chapter of my life is officially closed.

Sullivan is optimistic for women with uterine anomalies who want to have successful pregnancies. Twenty years ago, doctors were only able to confirm the diagnosis with invasive tests or a hysteroscopy or a pelvic laparoscopy, which uses incisions. Now 3D ultrasounds allow a quick and safe way for doctors to diagnose them. “It gives me hope that, for the next generation, will be picking these up earlier and easier than we did in the past.”

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