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Arteriovenous malformation (AVM) in the uterus by Cath Fisher

I am interested in locating any other women who may have an AVM in the uterus. I have this condition, which was diagnosed in 1992, after a series of massive hemorrhages. This condition is considered life threatening, and is very rare. My husband and I were in the process of migrating to Canada, and I hemorrhaged and collapsed at the airport, the day we arrived. I was initially diagnosed by a doctor in Vancouver, although I did not receive any treatment there, as I had not met the residency requirement for health coverage, and I was not insured. At the time of diagnosis, I was told I would die unless I underwent a hysterectomy. I immediately returned to Australia, where the diagnosis was confirmed. I was treated, in the Royal Women's Hospital of Melbourne. At the time of treatment, I was told I was one of only about 5 cases seen in the previous 5 years. Diagnosis was made by angiography and at the same time, I underwent the first of 2 treatments, which involved embolizing (blocking) the arteies and veins. The radiologist who treated me said he had seen about 3 other women with this condition in the past 20 years. He said he had never heard of a woman who had been diagnosed & treated with an AVM having a successful pregnancy, however he was able to locate an article from a European medical journal which described such a pregnancy. My treatment was partially successful. Some of the arteries and veins which contriblted to teh AVM were destroyed, but the area was large an dit could not be completely obliterated without comprimising the blood supply to the uterus. I became pregnant in 1993 and had a healthy baby boy in July '94. I did not experience any complications associated with the birth, although it was expected that I would probably hemorrhage after the delivery of the placenta. I had another hemorrhage in May '95, which was monitored but not treated. I am now pregnant again, due in August. This pregnancy is also considered hi risk, as the AVM is still present. I did not imagine I would ever be able to have a child after the grim diagnosis and the lack of information about this condition. There is so little known about this condition and how it affects pregnancy, it is uncharted territory. I would love to hear from anyone who has this condition, or who has a friend or relative with an AVM in the uterus. Anyone who has this problem may also want to hear about my treatment and gain some hope from my healthy pregnancy and delivery. Cath Fisher cfisher@infoxchange.net.au

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Last updated Sunday, November 16, 1997 by Donna Dolezal Zelzer, djz@efn.org