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How I Was Diagnosed With Asherman's Syndrome

My Period Didn't Return After Childbirth, Thanks to a Rare Disease I Didn't Know I Had

When I first got my period at the age of 12, I thought I was pretty cool. Finally a woman! Maybe I'll get boobs! But the luster wore off quickly, and by the time I was in my mid-teens, I was ready to be done with periods forever. I had heavy periods with bad cramping and would spend a full week out of every month in total misery. When I got pregnant with my daughter, I was excited for many reasons, not the least one being that I would have at least nine months period-free. I had heard from other moms that your period usually comes back when you start to wean from breastfeeding, so when my daughter was fully weened around, I expected my good old friend Aunt Flo to return. To be honest, I wasn't really paying attention to the calendar. I was struggling with postpartum depression and anxiety, and then I started having some really weird and painful symptoms about 10 months postpartum.

They all seemed gastrointestinal — and were very disruptive to my daily life. My primary care doctor was concerned about these symptoms and ran a bunch of tests, but for the most part, everything came back normal. A breath test showed an overabundance of "bad bacteria" in my stomach, so I adjusted my diet and waited for the symptoms to subside. They didn't. My doctor referred me to a GI specialist, who I was sure could solve my problems. He ordered another series of tests, including an MRI and a colonoscopy. All this time, I still wasn't getting my period, but at this point I was chalking it up to my body being in distress physically and emotionally.

The gastroenterologist ultimately diagnosed me with mild irritable bowel syndrome (IBS), which is typically a diagnosis of elimination, or "We can't find anything else wrong, so this is what we're calling your problem." I was frustrated and demoralized. But there were next steps to take. The MRI he ordered showed some large cysts on my ovaries, so he recommended I see my OB/GYN. I was in the market for a new OB, because I felt really failed by the one who delivered my daughter. I had a long road to conceiving, a complicated pregnancy, and a traumatic delivery. All told, I had two miscarriages, four D and C procedures, and a balloon placed in my uterus to prevent hemorrhaging after a missed diagnosis of placenta accreta (when the placenta grows too deeply into the uterine wall). After all of that, I had to beg my OB to see me before my six-week postpartum checkup, and even though I felt terrible and uncomfortable at that appointment, she discharged me from her care.

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All that is to say that when I heard about the cysts on my ovaries, I needed to find a new OB/GYN right away. I did some research and found a placenta accreta specialist in my area. I made an appointment, and when I went to see her, her first question was when my period returned. I had just celebrated my daughter's first birthday. I was slowly climbing out of the depths of postpartum depression. I sat in her office and realized, "Oh wow, actually, it hasn't returned!" She tried putting me on birth control to force my cycle to normalize, but it didn't work. She ran a hormone blood panel, but everything came back normal. She ordered an ultrasound and said to me, "I think you have Asherman's syndrome."

I will confess right now that I am a WebMD addict. Part of my anxiety cycle is to research symptoms until I've convinced myself I have a rare disease, so that when it turns out to be nothing, I feel like I've dodged a bullet. I'm working on it in therapy, but at that time, WebMD was still my BFF and I was so mad at her for not telling me about this possibility. The National Organization For Rare Disorders defines Asherman's syndrome as "an uncommon, acquired, gynecological disorder characterized by changes in the menstrual cycle. Patients experience reduced menstrual flow, increased cramping and abdominal pain, eventual cessation of menstrual cycles (amenorrhea), and, in many instances, infertility." It is a result of scraping the uterine wall during a D and C procedure (reminder — I had 4), uterine infections, and other factors. It causes the lining of the uterus to develop scarring and adhesions, and many times the walls of the uterus stick to each other.

This suspicion from my doctor was a lot to process, but I didn't have long to dwell on it. My ultrasound confirmed the diagnosis, and I was referred to a specialist. Many of the symptoms that ended up leading to my IBS diagnosis, like abdominal cramping and bloating, were actually because of Asherman's syndrome. My doctor was very clear — this was serious, and meant it would be difficult to get pregnant and stay pregnant in the future. At first, I was numb. Then I was angry. I had already been through so much! Why did I have to go through even more? Why didn't another doctor, especially the OB that delivered my daughter, warn me about this? Then, I felt really, really sad. My husband and I dreamed of a big family, and that dream was looking less and less likely. I tried to stay positive, and when I met with the Asherman's specialist, I felt ready to take on this challenge.

The first meeting was actually kind of funny. The doctor was so blunt, but in the best way, and basically confirmed that this was a dire situation. But then he popped out of his chair and said, "Alright should we try to cure this bad boy?" My husband and I were like, "Uhhhhh," as the doctor brought us straight into the procedure room. What came next would be one of the wildest medical experiences of my life. "About 25 percent of people can't handle this procedure awake, so tell me if it starts to be too much," he said as he prepped the room. I laughed nervously and put my feet in the stirrups. First, he filled my uterus with a warm, sterile saline solution. Then, he inserted a camera with a light to take a look around. And I could see the whole thing on the big TV screen in front of my face. I think if I had known what was about to happen, I would have been one of the 25 percent, but I was in such shock that I just kept going.

As he moved around my uterus, it was easy to see the problem. I had a lot of scarring — white tissue that had no blood flow to it. My uterine wall was stuck to itself toward the top left of my uterus and was blocking the fallopian tube. Then, the craziest part of all happened. The doctor grabbed a pair of scissors, inserted them next to the camera, and started snipping away. I think my husband almost passed out. After about 20 minutes, we were done, and the doctor was happy to report that he got rid of most of the scar tissue. He said the prognosis was OK; I would have to come back in a few months, after a treatment of hormones, to see how things looked. Those few months were a long, hard waiting game. Would the scarring come back? Would I ever be able to have kids?

Fast-forward to my next procedure. My doctor was happy that the hormone treatment had worked as intended, and when he went back into my uterus, none of the scar tissue had returned. He reported that the five to 10 percent of scar tissue left was permanent, but he did not feel like it would prevent me from having children. My husband and I both cried happy tears. This was the best of the worst situation.

Shortly after the second procedure, my period returned, and to date, I've had a normal cycle for months. It remains to be seen whether or not I will have fertility issues, but after all I have been through, I'm ready to take on the challenge — whatever it is.

Image Source: Getty / Tuan Tran
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