Jenny's Success Story

I gave birth to my first child in summer 2000. For several weeks afterwards I kept bleeding heavily and feeling like I was coming down with the flu. I called the doctor three times in the first three weeks but each time she told me that if I wasn't running a fever or bleeding enough to fill a pad an hour, I didn't need to worry. She never asked me to come to the office for an exam. After the first three weeks I stopped calling her because she was so emphatic about me not needing to call.

At five weeks postpartum I began hemorrhaging and went to the emergency room, where they discovered I still had a large piece of placenta in my uterus, and they did a D&C to remove it. The doctor said she was surprised because the day my baby was born she had sent the placenta to the pathology lab and the lab results said it was the whole placenta, but apparently the lab results were wrong. Later I read that it is still possible to have retained placenta even if a pathology report says the placenta was complete. I wish my doctor had asked me to come for an exam when I kept calling her those first three weeks.

The amount of retained placenta was so large that I still looked several months pregnant at five weeks postpartum, and strangers were still asking me when my baby was due. After the D&C when I saw how much flatter my stomach was, I realized my distended abdomen had been another warning sign.

After the D&C I never got my period. At first I thought it was because I was breastfeeding. But several months after I stopped breastfeeding my period still hadn't arrived, so I consulted my doctor (I had found a new doctor after the hemorrhaging episode). He said I might need hormones to start my period again, but he said it was also possible I might have Asherman's Syndrome, which meant scarring in the uterus. He said Asherman's was rare but not getting a period after a D&C was a possible symptom of it. He said we would try the hormones first. So he prescribed birth control pills to see if my period would start. It didn't. Then he did an ultrasound and said it looked like my entire uterus was stuck together, flat like a pancake. He said it looked like a severe case of Asherman's Syndrome, but he would need to do a hysteroscopy and laparoscopy to diagnose it for certain, because ultrasound was not a reliable means of diagnosis. He told me he had only treated 3 cases of Asherman's Syndrome in his career, and said he would refer me to the local university hospital if I preferred.

I decided to go to the university hospital because they had a little more experience with Asherman's there. When the doctor at the university hospital did the surgery, she found that my uterus was 100 percent obliterated by scar tissue, but she managed to open it up. But when she did a follow-up hysteroscopy two months later, scar tissue had returned in 30 percent of my uterus. She removed the new scar tissue, but at the next follow-up hysteroscopy, scar tissue had returned again, this time in 50 percent of my uterus. She said she didn't think my case was curable, and she wrote on my chart in big letters, "RECOMMEND SURROGACY OR ADOPTION."

My regular OB/GYN told me to seek a second opinion. I looked on the internet and found this website and found out about a doctor in my city who had a lot of experience treating Asherman's, much more than the doctors at the university hospital. He said he thought he might be able to help me. The week of my first surgery with him, he also was treating 3 other women for Asherman's; that was reassuring. And in fact, he was able to cure my Asherman's in only three months. Two months after that he did a follow-up exam to make sure the scarring had not returned. Then he said it was safe to try to get pregnant.

After 6 months of trying, I got pregnant. My baby was born 6 weeks early but she was fine. Unfortunately my placenta did not deliver; I had placenta accreta (the placenta had grown into the wall of the uterus) and I had to have an emergency hysterectomy. My doctor was prepared for this because we had read in a study that there is an increased risk of placenta accreta after severe Asherman's.

I consider my story a success story because I have my two daughters. My advice to anyone with a severe case of Asherman's Syndrome is to find a doctor who has a lot of experience treating it, wait to get pregnant until all the scar tissue is removed (because getting pregnant with scar tissue still present is risky), and when you do get pregnant, find a doctor who is aware of the risks in a post-Asherman's pregnancy, preferably a doctor who specializes in high-risk pregnancies.

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