One Mom’s Miscarriage & The Medical Diagnosis You’ve Probably Never Heard Of

The advice “just relax—that’s when it’ll happen!” tended to have the opposite effect on me. I would feel my blood pressure rise as I tried to spit out anything to change the subject. Is being relaxed a good thing when you’re trying to get pregnant (or just in general)? Of course. But it turns out that wasn’t actually why I wasn’t getting pregnant. It was fleeting before many other feelings came crashing down, but my first thought when, half-drugged, I heard the diagnosis of Asherman’s Syndrome was  “I was right! They were wrong!”

I had gotten pregnant quickly with my daughter in 2013. When my husband and I learned on the very dramatic medical Match Day in 2015 that we’d be moving across the country a little over a year later, we agreed it was time to try  to get pregnant again to be closer to family for this baby’s birth.

I was pregnant before I had time to digest it all. With the odd way pregnancies are calculated, my pregnancy start date was actually Match Day and my due date on Christmas Day. It seemed perfect and, our families all agreed, meant to be. I wasn’t worried about the first ultrasound at around eight weeks because I felt pregnant. I even went by myself. That was a mistake–I was told I had a 50% chance of it being a viable pregnancy, but my gut told me otherwise.

The bleeding started days later. Over a week and a half period, the amount of bleeding and intensity of cramping took me by surprise. I thought surely I had miscarried completely, but an ultrasound revealed I still had “retained product” (a phrase that still makes me shiver).  A d&c was scheduled for the next day. I didn’t think twice about it. My body was worn out, and I was emotionally tired. I just needed it to end.

In the coming weeks, I started to grieve. As people with similar due dates announced their pregnancies, it stung. When others asked how far along I had been when I miscarried, I struggled to even know the answer- 8 weeks when I started? A day shy of 10 weeks when I had the d&c? Does it matter? Even still, I stayed fairly positive and we decided to try again right away. I was hopeful from my history of getting pregnant easily and held fast to the belief that our next child would be here only because the miscarriage had happened.

I didn’t even realize I’d had a period until a routine follow-up. I mentioned seeing slight spotting a few weeks after the procedure and my OB explained that was likely my period. Nothing to be alarmed at—the first period after a d&c is notorious for being uncharacteristically light or heavy.

My following period was only a little more noticeable but also more painful. I started to worry. When the next one was still very light and even more painful, I realized something might actually be wrong (and not just in my head).

If you have googled enough symptoms, you have been self-diagnosed with a number of rare conditions that seem as ludicrous by morning as they do scary by night. As a type-A personality married to a doctor and who worked in the medical field, I know just enough to be dangerous. Less than two months after the d&c and after an embarrassing amount of time spent reading online, I diagnosed myself with Asherman’s syndrome.

Things didn’t get better. My periods stayed scant and increased in pain. It started to affect my everyday activities. My OB reiterated that it was rare but listened to my concerns. Blood work revealed my hormones were normal. This is one big reason that diagnosing Asherman’s is so difficult—even ultrasounds can appear normal.

Finally, in October I had what’s called a saline ultrasound or (Saline infusion sonohysterography/SIS to be technical). We all expected it to ease my worries. When my doctor couldn’t get my uterine cavity to distend with saline, I was referred to a reproductive endocrinologist. An x-ray dye test (hysterosalpingogram/HSG) in early December gave me the diagnosis I had suspected months before.

Asherman’s is the formation of scar tissue in your uterus, often after a d&c or other uterine procedure, and it blocks (or mostly blocks in my case) the outflow of blood—very much explaining the pain. The intrauterine adhesions can make it difficult to get pregnant and very risky if you do get pregnant untreated.

The first step in treatment is surgery to remove the adhesions (about 30% of my uterine cavity). Many doctors also place a balloon in your uterus for about a week in hopes it’ll prevent the scar tissue from forming again (common). Estrogen therapy is also commonly used to regrow your lining after the surgery.

Christmas (my due date) was hard not only for marking our loss but also because I’d assumed I’d be pregnant by then. I rang in 2016 anxious about my upcoming surgery but grateful to finally have an answer and a plan. Days later, I traveled to Boston to see an Asherman’s expert for surgery (Dr. Keith Isaacson at Newton-Wellesley Hospital) and left feeling hopeful.

I try not to scare women who’ve had or may have a d&c. It can be unavoidable, and if you do have one, odds are in your favor that all goes as planned. Looking back, my OB and I even agreed we had made the right decision at the time. Still, it’s important to remember that the fine print is there for a reason because there are risks with any surgical procedure—something I did not consider because it seemed so routine. I think my biggest takeaway is that we all know our bodies best. Speak up to your doctor if you think something is wrong, push for tests. Just because something is considered rare doesn’t mean you can’t have it. 

For more information about Asherman’s, visit ashermans.org.

Stay tuned next week, I’ll be posting this brave Mama’s birth story that was made possible by this diagnosis and procedure.

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