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granulomatous mastitis User Group
granulomatous mastitis please help
About This Group:

This group is intended as a meeting place and forum for those who have been diagnosed with granulomatous mastitis ('GM') or idiopathic granulomatous mastitis ('IGM'). I think one of the greatest challenges with this disease is its rarity and the associated lack of understanding in the medical community. But we can share here - and hopefully make the healing process a little easier for each other.

Founded by JoJo45 on January 17, 2010
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granulomatous mastitis please help

Hi I'm 25 and I have Idiopathic granulomatous mastitis it Started in sepetember of 2012 with a hard lump 10 cm by 8 cm and I have never had children. Was on 6 different types of antibiotics even shots in my but every day nothing worked they thought it then could be periductal mastits did 8 biopsies and came back neg so they did surgery removing to abcess (abscess) and removing to ducts on my nipple. Sent to tissue out to get tested and came back with Idiopathic granulomatous mastitis Dr says he took out the main part of the abcess (abscess) but left some tissue in he didn't want to remove all the tissue hoping my body would heal the rest ( didn't know it was Idiopathic granulomatous mastitis) now my surgery wounds wont heal and are completely open and formed ulcers around to cut marks Dr say everything looks fine but I don't think wounds that don't heal are fine and don't know if leaving the rest of the tissue in is a good idea I need some advice please help

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I'm so sorry you had to go through that.  I think in the 3 months I've had this disease one thing I've learnt is to really listen to my body and not be afraid to get 2nd opinions.  I did that recently and the Dr actually told me that my current Dr is giving the right advice and treatment course, but then also told me more information on what I can expect (getting abcesses etc).  Just getting any further information feels comforting (which is hard to find with this illness as its such an unknown).

Get a second opinion - you won't be hurting the Dr's feelings - their used to it.
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