Asherman's Syndrome

Several people asked me what Asherman's Syndrome is, how it has effected me and what the fall out has been. Though this is a vulnerable story, I share it because Asherman's syndrome is so rare, which creates a feeling of isolation for those who do get it. Also, there is a need for greater awareness of women's health issues.

I had two healthy full term pregnancies before this one. My son is 5 and my daughter is 3.5. However, after each delivery, I had retained placenta. Unfortunately, both times it was undiscovered for weeks; both times I got uterine infections and had D&Cs. After my daughter, not all the retained product was removed during the first D&C and a second D&C was performed a week later. Months went by uneventfully but my cycles did not return. The doctors assured me this was normal since I was breastfeeding. But I felt them. Every 28 days I had excruciating pain, literally bringing me to my knees in tears. The writhing pain would last for about 2 days. My ob-gyns were unable to diagnose me. Once they thought I had a stomach bug. Then it was gas. Then it was constipation. Finally, after seeing several doctors and months of incredible pain, I had a hysterosalpingogram (HSG). I had Asherman's Syndrome, class IV. The condition is very hard to diagnose because it is not easily detectable by ultrasound.

Asherman's Syndrome is an acquired condition. It is characterized by adhesions (scar tissue) resulting from uterine trauma (ie. retained placenta, uterine infection, an overly aggressive D&C, a missed miscarriage or an elective abortion). In many cases the walls of the uterus grow together. It can be likened to a balloon left in a hot car and melted. This was true in my case and I had less than 5% of my uterine cavity left. Because it is a physical problem, your hormones still allow you to ovulate and the remaining endometrial lining still thickens and sheds (menstruation). However, my scarring prevented the lining from shedding through the cervix. Rather, it backwashed up my fallopian tube, into my abdomen and was reabsorbed into my body causing my monthly pain.

Asherman's is rare and must be treated by a very experienced physician to prevent worsening the condition. There are only a handful of specialists in the U.S. After several misdiagnoses and an unsatisfactory treatment plan at my local facility, I began commuting to Newton Wellesley Hospital's Center for Minimally Invasive Gynecological Surgery. I had two surgeries and several in-office procedures to irradicate my adhesions.

Though Asherman's often results in infertility, I had no problems getting pregnant after treatment. My third pregnancy failed during the second trimester and I was forced to have another D&C after which I hemorrhaged - all a complete nightmare. My fourth pregnancy I had a missed miscarriage and yet another D&C. The specialists were unable to tell me why my pregnancies failed. None of the data following my two miscarriages was conclusive, though I felt it was from my Asherman's.

John and I decided we were blessed to have two children and agreed to stop. I was stunned to find I was pregnant with Darren. So, are my current problems related to Asherman's? We don't know. This pregnancy I have been diagnosed with an incompetent cervix, which can be caused by repeated intrauterine procedures performed through the cervical entrance. However, no data proves or disproves that is true in my case. An incompetent cervix can also be caused hormonally. We simply don't know which is true for me.

Asherman's is difficult for many reasons. It simultaneously attacks you physically, sexually, emotionally and spiritually. It attacks your marriage. It attacks your family. It makes you wonder about life and death and God and community. It makes you ask existential questions. But, amazingly, my experience made me grow as a person; it has given me a broader and healthier perspective of the world around me.

Along the way, I learned the female body is incredibly amazing and even more complex than anyone realizes. The female body is strong and amazingly resilient. It is beautiful. Conception and birth are true miracles. I learned people have no control over life or death. I learned doctors don't have all the answers and that, in many ways, medicine is a soft science. I learned my doctors are doing the best they can to help my family and me, though they don't always get it right. Through these realizations, much of my anger and frustration has been alleviated. I have come to believe that doctors have my best interest in mind. I learned to extend a little more grace.

Asherman's has taught me to value relationships in a much deeper way than I ever have before. I have a stronger belief and commitment to community and friendship. I have a healthier view of marriage. I have a much stronger belief in a God and different idea of who that God is.

This is only one story of many, but I hope it helps in a small way. Please feel free to post questions or comments. And if you have Asherman's Syndrome or an incompetent cervix I hope this helps you to feel not so alone.