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Genetic and Rare Diseases Information Center (GARD)

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Intravenous leiomyomatosis

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How might intravenous leiomyomatosis be treated?

The mainstay of treatment for IVL is surgery to remove the tumor and its spread throughout the body. The use of anti-estrogen therapy, such as tamoxifen, has also been suggested. Surgery requires the complete removal of the tumor, since incomplete removal may result in a recurrence and hence further surgery or even death. Many affected individuals undergo a hysterectomy; bilateral oophorectomy is also suggested because these tumors are estrogen dependent. Part of a tumor left inside the pelvic veins at the time of hysterectomy can extend towards the right side of the heart, leading to obstruction and other adverse events later in life. The median time between hysterectomy to the diagnosis of IVL with cardiac involvement is 4 years. Once there is cardiac involvement, a patient may require open-heart surgery to remove the IVL from the affected areas.[1][2]
Last updated: 11/1/2013

  1. Wu CK et al.. Intravenous leiomyomatosis with intracardiac extension. Internal Medicine. 2009; 48:997-1001. Accessed 11/1/2013.
  2. Liu B, Liu C, Guan H, Li Y, Song X, Shen K, Miao Q. leiomyomatosis with inferior vena cava and heart extension. J Vasc Surg. 2009; 50(4):897-902. Accessed 11/1/2013.

Clinical Trials & Research for this Disease

  • lists trials that are studying or have studied Intravenous leiomyomatosis. Click on the link to go to to read descriptions of these studies.