Mara didn't have a name yet when I learned she died.
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."
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.
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 miscarriageâ€”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 backâ€”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.
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
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 ishonest 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."
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.
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 ishonest.
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.
Putting my grief into action
After reviewing ACOG's guidelines, I felt so concerned about what I consideredâ€” based on my own experience and the medical research from Asherman expertsâ€”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."
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 symptomsâ€”like my doctor did to me.
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.
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 offâ€¦ 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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