I Developed Asherman Syndrome After a Miscarriage—It Threatened My Fertility and Might Have Been Preventable
Mara didn't have a name yet when I learned she died.
It was September 2020, and I wailed as I stared at her body on the ultrasound monitor. My husband, Thomas, watched by video from the parking lot because he was not allowed inside the hospital due to the pandemic. "I was just stuck there," he recalls. "I felt helpless."
We named her a few days later as we wandered around a lakeside trail, sipping wine from disposable coffee cups and grieving a baby whose heartbeat we never heard. The name "Mara" captured our suffering. In Arabic, it means "joy." But in Hebrew, "Mara" means "bitter."
Until then, everything seemed easy. I was 38 years old and got pregnant in July after trying for just four months. I was feeling great, exercising daily, and craving fruits.
We told our parents the news at seven weeks. My mom and dad shrieked after we gifted them an egg with a slip of paper inside that read, "We're EGG-specting!" At the time, my sister was also pregnant with her first child. My parents could hardly contain their excitement, knowing they would soon have two grandchildren after waiting for so many years.
My sister's daughter was born the first Friday in September, and I was thrilled to become "Aunt Sarah." I was already daydreaming about how our children would be close enough in age to play together. But the joy I felt imagining our kids growing up side-by-side would be short-lived.
I went in for an ultrasound the following Friday. It coincided with the anniversary of the September 11 attacks, and images of the Twin Towers collapsing kept replaying over and over on a nearby television in the waiting room.
A nurse finally called me back, and I stared at the ultrasound screen while she guided a wand across my belly. I sensed something was wrong by her silence. Finally, I got the courage to ask if she saw any red flags.
"I don't hear a heartbeat," she said. Her words took my breath away, and I sobbed as she went to fetch a doctor.
The bitter part of our story didn't end there. And while our loss was no one's fault, what happened next was probably preventable.
A routine surgical procedure
I didn't question it when my doctor scheduled me for a dilation and curettage (D&C) to remove Mara's remains. This routine and common surgery has been used for more than a century to remove fetal tissue after a miscarriage—as well as to remove retained placenta after a birth. During a D&C, the contents of the uterus are emptied with a suction device, or a combination of suction and scraping with a sharp, spoon-shaped tool called a curette.
Having a D&C after a miscarriage feels like a consequential event. It is the medical equivalent of a burial. Many people who have one allow the hospital to discard the remains, but we needed a path to healing, so we asked my doctor to preserve them so we could cremate her and plant her ashes along with a tree.
Everyone at the hospital treated the surgery as routine. Even the generic consent forms, with only vague warnings of the risks of a D&C, implied that what I was about to go through was ordinary.
While I waited for the surgery, the nurses encouraged me to try to get pregnant again, and they told stories about the "rainbow babies" they had following their own miscarriages. My doctor added that the ease with which I conceived Mara boded well for my fertility.
Two weeks later, after a quick pelvic exam to make sure I was fully recovered from the surgery, another ob-gyn in the practice said I could start trying for a baby after my period came back—a time frame that nearly every article online claims can take between two to six weeks.
But my period never returned.
My missed periods offered clues
Each month, I felt signs my period was coming. I was bloated, and I had cramps that were more intense than I had ever felt before. But I never saw anything more than a few drops of blood. I didn't need a tampon, or even a pantiliner. It was as if my period was trapped inside my body.
I took to Google for answers. Over and over, there was only one explanation for my missing period: a disorder called Asherman syndrome.
Asherman syndrome is characterized by scarring, or "adhesions," inside the uterus or on the cervix, and it's often caused by trauma during surgery. Many cases of Asherman syndrome arise after a D&C, I learned. Common symptoms include scant or missing periods, known as amenorrhea, and cyclical menstrual cramping that can at times feel more intense due to trapped menstrual blood. Many people who develop Asherman's cannot conceive, and those who do often miscarry.
Diagnosis and treatment of Asherman syndrome often require multiple surgeries with a procedure called a hysteroscopy, in which a thin lighted tube helps visualize the uterus. Meanwhile, the doctor snips away the adhesions with a small instrument, such as microscissors.
The odds of getting pregnant for people with Asherman syndrome depend on the severity of the scarring. Even after treatment, many people face higher pregnancy complication risks, and some have trouble rebuilding a healthy endometrial lining, which is vital to becoming and staying pregnant.
Most online resources, including the National Organization for Rare Disorders, state that Asherman's is "rare." Still, I wondered why no one had warned me about the potential complication from my D&C.
Finding a doctor who listened to me
In December 2020, after three months passed without a period, I contacted the doctor who performed my D&C. Her office did not see my problem as urgent, and I could not secure an appointment for several weeks. When she finally saw me and I told her I feared I had Asherman syndrome, she seemed unconcerned. She downplayed my symptoms, saying she doubted I had Asherman syndrome because a vaginal ultrasound to examine my uterine lining showed I was technically menstruating and therefore still ovulating. She even suggested that stress could be the culprit.
I suspected she was wrong. Perhaps she knew it, too, because she referred me to a fertility doctor who ran tests to rule out other possible diagnoses. After ultrasound technicians discovered they couldn't pass a catheter through my cervix during one test, I followed my suspicions.
I searched for Asherman specialists and found James Robinson, MD, a gynecologic surgeon at MedStar Health in my home city of Washington, DC. He diagnosed me in just one telemedicine session and scheduled me for my first of three hysteroscopies, based on my symptoms: I had no period since my D&C, I had cramping every month, and I was not able to conceive. For the first time, I felt like someone was listening to me.
Asherman's was not so rare after all
"Your story I hear every single week," Dr. Robinson told me in an interview a few months later, noting that most of his patients arrive like I had: frustrated that no one warned them of scarring risks from uterine surgery.
I joined an online support group for women with Asherman syndrome, where I saw my own story reflected in their experiences. Like me, their doctors didn't believe they had Asherman syndrome, and they had to hunt for specialists who would take them seriously. I started to suspect that Asherman syndrome was not so rare.
"After almost a year of pain and amenorrhea, my ob-gyn still insisted I could not have Asherman syndrome," Marisa Ruiz of California, whom I met online, tells me now. "By the time I finally saw an Asherman specialist and was diagnosed, my uterus was 70% scarred shut."
Charles March, MD, formerly with HRC Fertility in Pasadena, California, who had treated more than 3,000 patients with Asherman syndrome before retiring last year, has long sought to make the case that Asherman syndrome is not rare. He points to multiple studies, which have shown that the incidence of developing adhesions can be in the range of 13% to 46%.
One systematic review concluded that one in five women who had a miscarriage developed intrauterine adhesions and found that the D&C procedure was a risk factor for developing scarring. The risk for adhesions is even greater for those who've had multiple D&Cs, as well as for those who have retained placenta or experienced a later-term pregnancy loss.
"Doctors don't know, and they aren't taught in medical school or a residency very much about the condition," Dr. March tells Health, adding, "I think the whole culture has to change."
Asherman's also may be becoming more common because scarring risks increase with age, according to Australia-based gynecologist and Asherman specialist Thierry Vancaillie, MD. "The incidence of Asherman's has increased, and that is mainly due to the fact that in the modern world, pregnancy is delayed and most women are of an older age," he tells Health.
In a study he led that was published in 2020, Dr. Vancaillie urged doctors to consider Asherman's as a possible diagnosis "in any woman with a history of miscarriage or postpartum curettage who then fails to conceive again."
What I wish I had known before my procedure
Through my own research and talking to experts and other women with Asherman's, I discovered a few things I wish I had known before I consented to a D&C.
For starters, the D&C is considered a "blind" procedure, meaning it is performed by feel, without any tools to help doctors see what they are doing. This persists even though modern devices such as ultrasound and hysteroscope are available to help doctors visualize the uterus both during and after surgery, to make sure they are removing all of the pregnancy tissue while avoiding any damage to the uterine lining.
A "blind" D&C increases the risk that pregnancy tissue can be missed, according to Dr. Vancaillie, and having retained fetal products or placenta is "the number one risk factor for developing scar tissue." Checking that the uterine cavity is empty should be done, he says, adding that uterine imaging should be a "minimum" standard.
The type of instrument used in a D&C also matters. A D&C performed with a vacuum-like machine that creates suction, for instance, is less traumatic to the uterine lining than a sharp curette, according to multiple experts, including the International Federation of Gynecology and Obstetrics. "There are very few indications for a sharp curettage," says Dr. Robinson.
The best option after a miscarriage is to try using medication to empty the uterus because it is the least risky, Dr. Robinson says. If that is not possible, he recommends the hysteroscopic removal of pregnancy tissue because it allows for "direct visualization" and lets the doctor empty the uterus with precision, without scraping or suctioning the entire lining. If operative hysteroscopy is not possible, then Dr. Robinson suggests the next-best option would be a suction curettage.
Discovering what happened during my D&C
I was dumbfounded to learn that a D&C could even be performed blindly. It seemed like common sense that performing any surgery by feel is a bad idea. I wondered whether this happened to me, so I requested my medical file and saw for the first time a description of my surgery.
There, I read how my baby's remains had been removed, both with suction and by being scraped out of me with a sharp curette, until I was empty inside. There was no mention of a hysteroscopy, let alone basic ultrasound.
I became curious about what kind of guidance ob-gyns were getting about best practice standards for a D&C, so I contacted the American College of Obstetricians and Gynecologists (ACOG). ACOG is the largest medical organization in the US for ob-gyns, with more than 60,000 members. The group is responsible for issuing practice guidelines that, while not mandatory, are influential in establishing standards of care.
ACOG sent me a copy of its guidelines on the management of early pregnancy loss. To my surprise, I discovered they are, at times, out of step with what some of the world's leading Asherman syndrome experts are recommending.
ACOG's guidelines do promote suction curettage over sharp curettage. But rather than urging doctors to largely avoid sharp curettage due to scarring risks, they state that suction is "superior" to sharp curettage alone and that sharp curettage "does not provide any additional benefit" when used in combination with suction in a first trimester loss.
The guidelines are also silent on the risks of a blind D&C. They do not address ultrasound-guided surgery, let alone superior alternatives such as operative hysteroscopy, despite evidence it could reduce scarring risks because it allows a doctor to visualize the uterus while being more precise in removing retained pregnancy tissue.
ACOG also claims that developing adhesions from a D&C is "rare," even though research suggests otherwise.
In response to my concerns with ACOG's guidelines, Christopher Zahn, MD, head of the ACOG practice committee, provided a statement to Health. In his statement, he acknowledged that the impact of Asherman syndrome on patients is "significant," but said evidence "does not support the routine use of ultrasound to guide the evacuation of the uterus," noting that it could "delay" care. An ACOG spokesperson added that while experts may have their own recommendations about the use of ultrasound during a D&C, ACOG is an evidence-based clinical organization that must "make its recommendations based on the available peer-reviewed published scientific literature, reflecting the entire body of evidence."
Putting my grief into action
After reviewing ACOG's guidelines, I felt so concerned about what I considered—based on my own experience and the medical research from Asherman experts—to be their shortcomings that I banded together with some women I met online and wrote a petition urging ACOG to update its standard of care for a D&C.
In it, we asked ACOG to "make the ultrasound-guided D&C the standard of care, in cases where a hysteroscopic resection or miscarriage management with medication is not available or appropriate," and stop referring to Asherman syndrome as "rare."
The petition, which I sent to ACOG this past June, garnered 128 signatures from patients with Asherman syndrome from around the globe. An ACOG spokesperson said later that same month its practice committee would review it.
It also sparked the interest of a group of women in Australia and New Zealand I met online who, like me, suffered from Asherman syndrome. Using the petition as inspiration, they sent a similar request in September to the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, asking for the organization to help improve how Asherman syndrome is diagnosed, treated, and managed.
While Asherman syndrome is not always avoidable, there are things I think doctors can do to minimize risks. They should use less risky surgical tools, anticipate possible scarring, and follow up after surgery to detect it. Above all, doctors should not brush people off when they report possible symptoms—like my doctor did to me.
Dr. March told me the myth that Asherman's is rare continues not only because of a lack of education about the condition among doctors, but also because patients who develop it often fail to report the negative outcome to their ob-gyns.
Inspired by his words, the next day, I wrote a letter to the doctor who performed my D&C to let her know about my diagnosis from Dr. Robinson. "The intrauterine and cervical adhesions I developed from the D&C have been traumatic for me to endure and it has cost me seven-plus months of delays in my journey to become a mother, when time is not on my side," I wrote in that letter.
I also provided her with a link to an article that Dr. Robinson wrote to help educate doctors more about Asherman syndrome, and I urged her read it.
In her response, she said she would read Dr. Robinson's article, and she wished me luck on my "journey to a happy and healthy pregnancy," but she did not acknowledge the trauma I endured. That was the last time we communicated.
The grief that grips you after a miscarriage is a powerful force. In my case, I allowed it to take over, and I consented to the D&C without asking basic questions about the procedure or my own doctor's experience performing it. As hard as it may seem in that moment of pain, I now urge women in my online support groups to make sure they do their research first before agreeing to the surgery.
"All patients should be inquiring of their surgeons: 'Do you do this frequently?'" Dr. Robinson says. "If you start asking questions about the risk of adhesions and you start being blown off… you should probably seek a second opinion."
My journey continues
It took me more than six months to get treated for Asherman syndrome, robbing me of time I could have spent trying to conceive as my 40th birthday approaches.
On the seven-month anniversary of my D&C, I returned to the hospital again. This time, I was there to undo the damage. I drifted off to sleep, terrified of what Dr. Robinson might discover, yet hopeful he could remove the scarring that had prolonged the pain of losing Mara.
When I awoke, I felt like I had just downed 10 margaritas, but my mind could only think of one thing: "How bad is it?" I asked my husband.
He told me the news: The scarring was minimal. The majority of the scarring was in my cervix, and my lining was not damaged. Dr. Robinson felt confident in my prognosis. Compared to many people with Asherman syndrome, I was lucky. I covered my face, and I cried.
My journey to becoming a mother is not over, and it won't be easy. But now that I am armed with more knowledge, and my scarring has been cleared, at least it feels a little bit less bitter.
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