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Don’t fight Pelvic lipomatosis alone.
Find your community on the free RareGuru App.Pelvic lipomatosis is a rare disease of unknown cause, characterized by overgrowth of mature, non-cancerous fat cells in the pelvic region. The symptoms of pelvic lipomatosis are related to the compression of the urinary system (urinary frequency, dysuria, nocturia, and hematuria), lower intestinal tract (constipation, tenesmus, rectal bleeding, and ribbon-like stools with mucus), and vascular system (edema of lower extremities). Pelvic lipomatosis has been linked to chronic lower urinary tract infections, obesity, and endocrine dysfunction. Treatment usually seeks to alleviate symptoms, especially kidney obstruction and end stage renal disease. While most cases are not progressive, upper-tract urinary surgery may be needed for those with severe symptoms and/or evidence of urinary obstruction with deterioration of the kidney function.
Source: GARD Last updated on 05-01-20
To date, weight-loss has not been shown to be effective in managing pelvic lipomatosis. Treatment options for pelvic lipomatosis may include watchful waiting or surgery. Unfortunately, less invasive treatments such as antibiotics, steroids, and radiation therapy are not helpful.
Currently there are no well established treatment guidelines for pelvic lipomatosis. It can likewise be difficult to find doctors who have clinical experience with this rare condition. The following organization has a medical advisory board, physician locator services, and patient networks which may help you find doctors who are experienced in treating pelvic lipomatosis. While the group does not offer information on pelvic lipomatosis currently, they do advocate for all people with rare fat disorders.
Fat Disorders Research Society
2305 Robincrest Ln
Glenview, IL 60025
E-mail: http://www.fatdisorders.org/contact-fdrs/
Website: http://www.fatdisorders.org
Last updated on 05-01-20
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