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granulomatous mastitis User Group
Diagnosed yesterday with GM
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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Diagnosed yesterday with GM

Hi everyone, my name is Lizzie.  I am a 31 yr old, married, mom of 2.  In Oct 2012 I found a large mass in my rt breast.  My breast surgeon was unsure of what was going on so on Dec 17th I had surgery.  There were several masses with very think pus involved.  She cleaned it all out and put me on extensive antibiotics.  The results came back as Staph.  Over the holidays I did large amounts of antibiotics, had a hospital stay and still the pain and masses were there.  In January I had a picc line put in and did a month of IV antibiotics.  Still no resolve.  In March I had another surgery and more antibiotics.  The masses went down a little but very slightly.  When more masses formed beginning of April the diagnosis of infection was seeming less and less likely to be correct.  I had yet another u/s done and the findings were inconclusive.  So I had an MRI, still inconclusive.  Then this past Thursday I had a biopsy done.  They told me yesterday that I have GM.  I'm kinda thinking that this was what it always was since the cultures never grew anything in all of the many tests I've done.  I'm so tired of feeling awful and being poked and cut in my  breast.  I can't hug my kids on my right side, my husband can't touch my breast.  I am feeling so done with this.  From the looks of the steriod treatment isn't a great one.  Having been dealing with this for nearly a year, I am gonna talk to the drs about a double mastectomy. I have found a dr in my area that has experience in this cause I don't think my current one does.  I just feel like I can't spend the next few months/years of my small childrens life feeling awful.  I don't want to miss it cause I am sick and if a mastectomy could help I am all for it.  I am also high risk for breast cancer as well.  So might as well get this time bombs taken off!  Thanks for reading.  
3 Comments
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Avatar_f_tn
Hi! and welcome!
I have been dealing with GM since July 2012 (almost 1year now) and my mind goes from mastectomy to Not ready for mastectomy.
I went to a Plastic Surgeon on Monday, he studied the GM and he said that there is NO WAY to perform a mastectomy; as if they do, it means no nipple, no skin left and that I am too young to do it (I am 36). He said that GM is "Untouchable" meaning that if you touch it get worse.
I did prisoner, it did work, but I didn't want to continue with it. I don't want to take Methotrexate, so here I am doing healthy diet and doing bee venom therapy. So far so good, pain is not that horrible and at some point I am not having abscesses as often as I used to.
Hope we can help you!
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Avatar_f_tn
is not prisoner (lol) is prednisone...
Take care!
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Avatar_f_tn
I like how you say it's untouchable.  If you touch it, it gets worse.  I COULDN'T AGREE MORE! I stopped getting my abscesses cut and drained.  I don't see doctors as often anymore, I have nearly no pain most of the time and I feel like its finally getting better now that I leave it alone.  I took a very short dose of prednisone to calm it down after my biopsy.  It helped calm it down and I feel like its finally starting to improve.  Best wishes to you Lizzie and you as we'll Veronica
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