I have been recently diagnosed with idiopathic granulomatous mastitis, however I have been suffering from the symptoms for almost one year now. Back in March 2015, I had one site that was diagnosed as mastitis and it resolved after a few weeks of oral antibiotics. My breast specialist ordered a mammogram, ultrasound and biopsy to rule out inflammatory breast cancer. She said everything came back negative and we would just wait and see how I do. Well 6 months later I developed another site of infection, (again with very unpleasant symptoms) in the same breast, slightly different location. After a few weeks of oral antibiotics I was sent to an infectious disease doctor because I was not improving. He felt it presented more like cellulitis of the breast rather than mastitis - he started me on IV antibiotics. At that point I had lost the ability to function in my own life. I had to stop working, I can't use my left arm very much, and any activity I do usually causes pain in the mass in my breast. After 3 weeks I had improved quite a bit. I had an MRI done to rule out any abscess with fluid - nothing showed up. So I was switched to oral antibiotics - but a few days later I relapsed. I was put back on the IV treatment and sent back to the breast specialist. She ordered another MRI, this time with contrast, and said this is likely Idiopathic Granulomatous Mastitis. She has seen it maybe 2/3 times in her career. The MRI also showed that I may be developing the same thing on my right breast - but it isn't clear and it would just be at the very early stages - so she just wants to wait and see what happens. And, in the meantime surgically removed the mass on my left breast.
I would like to find a doctor that has treated this disorder more often ... who can take a look at my scans and weigh in on the likelihood of this reoccurring. Possibly present me with some other treatment options. This illness has completely disrupted my life and has greatly affected my husband and my two young children. I can't participate in my daily life anymore and am in constant pain. I am terrified at the possibility of going through this again.
Any input would be much appreciated! I am willing to travel to get proper treatment. Thank you.