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granulomatous mastitis User Group
Got my GM diagnosis today...
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
246 members
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Got my GM diagnosis today...

My saga started last year.  Early last year, I was about 6 months pregnant and started feeling pain and then a hard lump in my left breast.  Doctor's suspected mastitis of some sort, but ultrasound was inconclusive.  Thankfully the biopsy came negative.  Antibiotics didn't provide any relief, and after some time I gave up on them, and learned to live with the discomfort/pain.  After delivery, I started to breast feed, and I didn't even notice when the lump went away.

Fast forward to about a few weeks ago.  I started feeling pain in my right breast, and noticed a very small lump.  Within a week or so the pain magnified, and lump grew into the size of an egg.  I got put on antibiotics, and the ultrasound was once again inconclusive.  The doctor tried aspirating and nothing came out.  Finally they did a biopsy, and we got the results today.  They said it was GM, and there is no known treatment (and according to the doctor, the literature on steroids was inconclusive at best).  Doctor thinks that this is what likely happened with the left breast and well, and it will likely go away on its own.  In the mean time she suggested pain management with NSAIDs.

So while my post is mostly whining, I do have a reference that it got better (left breast) by leaving it alone.  The pain was getting slightly better after starting the Antibiotics and pain meds, but it's back after aspiration and biopsy, so poking it definitely makes it worse.  I plan to let it be for some time, and will post an update on how things change.

8 Comments
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Welcome! oh yes! GM is  "untouchable", you touch it and it get worse and of course Biopsy doesn't help at all!
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5265722_tn?1402527432
I've been dealing with this disease for 5 months now I have a hard mass and just noticed a hard small lump on my breast two days ago... Is that an abscess? My skin is turning a little red I wonder if its puss building up :( my incisional wound is still healing after two months sighs this is so frustrating.
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Hi! stills red? or it drained? because as for what you are saying it seems an abscess to me!  Take care!
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Hi! stills red? or it drained? because as for what you are saying it seems an abscess to me!  Take care!
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Hey Brendy, it sounds like you are getting new lumps.  I think this is normal.  I just got 2 new lumps too.  The bottom one was red, but the redness disappeared and now it's just hard.  

With abscesses we know the skin turns red, then purple, then fills with pus.  I'm wondering if the turmeric I'm drinking is fighting it off.  Try it out for a few days and see if it does anything to your lumps or appearance.  I warm up water (about 30 seconds), stir in 1/2 tsp turmeric and drink it in large gulps. It's not the greatest taste but it may be working for me.  I also take turmeric in capsules but it wasn't until I drank the turmeric powder that the red coloring of my lower lump went away.  

I also have a new lump under my areola.  I can't wait for this all to go away!!! When it does, I'm gonna throw a party!
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5265722_tn?1402527432
You and me both! I just recently bough pomegranate do you have any idea how that goes? I thought I read somewhere that it helps too.
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I drank some pomegranate juice in the beginning, but it was store bought.  And what I learned with buying it from the store is that it has to be pasteurized in order for it to have "shelf life".  And when you pasteurize juice, you lose all or most of the nutrients.  I'm assuming capsules or actual pommegranates would be best.  

I honestly believe my healthy diet and turmeric is curing me.  I pretty much have no pain anymore and I can tell that my breast has gotten smaller, mass is a little softer and the red areas are healing.  I bought a password protected album app for my iPhone and every week I take pictures of my breast.  I made a side by side collage of when I started taking pics and my most recent one and I can really tell the difference.  It's hard to tell by looking at it, when you look at your breast everyday it just seems like it looks the same.  I started taking pics so I could remember how my breast looked before it changed.  But seeing the improvement has helped me to be optimistic and realize that what I'm doing, without the drugs, is actually working.  I did take a 12 day steroid burst in May because I panicked and was afraid of it getting worse. It helped a little but some of the mass came back after I got off.  My breast mass continues to shrink without the steroids, so I'm happy with that.  I also recently started acupuncture and I'm hoping it will just add to my healing process.  I enjoy it.  It's gives me time to relax and stop all the worrying, plus it gets things moving inside my body, I can feel it, so I know it's doing something for me.  Hang in there, you're doing great and we will all be healed soon!  
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Hi All,

About 2 weeks ago, I was feeling really bad, and started to run a fever.  My primary gave me an antibiotic shot, and said that I should see the breast specialist again.  The breast surgeon said that there is an abscess forming on top of the original mass (she called it a secondary infection).  She put a nick in there and pus came out.  She put a wick in there and asked me to come back in a week.  For the whole week it drained pus every day, and we changed the bandage every day.  After a week, she took the wick off, but also said that there's another smaller secondary infection site.  Also, the pus that she had taken from last week did not grow any bacteria in it.  All this while I continued the antibiotics (Septra) and anti-inflammatory/NSAIDs.

This past Friday night/Saturday, my ankles begin to hurt really bad and were extremely swollen and painful.  On Monday, the Primary said that it is due to tendinitis in the achilles, which is made worse by poorer constitution due to the body trying to fight off the infection.  Additionally, she also drained some more pus from the second secondary infection site.  She also ordered a TB test (Quantiferon Gold Assay) just to eliminate that as a possibility, and sent the pus to the lab for culture.

I have another appointment with the surgeon tomorrow.  The first secondary infection site, which had the wick, still oozes pus every day.  While the primary suggested to get it flushed, and to get multiple wicks put in, I am nervous because I don;t want to irritate/poke/prod the original mass in fear of things getting much worse.

I am not sure what to do next.  If it was just the mass, i was content with living with it and managing the discomfort until it went away.  However, the abscess/secondary infections have been tough, along with the almost daily mild fevers.
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