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granulomatous mastitis User Group
Tips that have worked for me and what I've learned
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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Tips that have worked for me and what I've learned

So I've been dealing with this for about 8 months now. Diagnosed when I was in my first trimester of pregnancy. I now have a healthy 2 month old. I am currently under no treatment and have had some improvement.However, I will be seeing a rheumatologist today (Can't wait!). I go through days at a time of no open abscesses and little pain. A hard lump still exists and my right breast is noticeably smaller almost as if the tissue has been eaten away and I have many scars. I'm hoping these tips can help women new to the forum.

INITIAL DIAGNOSIS/TREATMENT:
I was given 3 types of antibiotics because the dr. believed it was mastitis that rarely occurs in pregnant women due to the milk ducts preparing to produce milk. I didn't have a fever, so it was not an infection. As my skin reddened, the dr. believed it could be inflammatory breast cancer. I was given a mammogram and a biopsy which came back negative. The inflammation finally led to the first abscess opening by itself which made me faint in the shower because the pus was unbelievable. It was then lanced and packed for 3 days. I went back and had a penrose drain put in instead because I couldn't handle the packing. It leaked pus for about a month and a half. After several ultrasounds, the doctor (breast specialist/surgeon), diagnosed it as GM. I believe GM has to be specifically tested for when the biopsy sample is done. My dr. diagnosed it through the ultrasounds and symptoms because he didn't want to puncture the skin again and risk piercing my milk ducts causing a fistula. I wouldn't recommend getting the penrose drain, it was the worst pain in my life, but it did help drain all the little connected pus pockets.

TIP: Ask Dr. to specifically test for GM if you are on here and unsure of what you have and you will be getting a biopsy.
TIP: Do not let breast surgeon repeatedly lance abscesses. Your body will continue to produce pus anyhow.

WOUND CARE: I allow the abscesses to come open on their own. When the irritation is bad, I go topless for a few hours to let it air out. I gently squeeze some of the pus out before the skin seals. I don't press too hard or massage, because I'm afraid it will just open tracks to other areas. Showering helps the skin close up. I don't use gauze or tape, but TELFA. It's like the stuff in the middle of a band aid but bigger. It has a little plastic covering so that it doesn't stick to the wound.

BRAS: I try to avoid them, but wear thin, sports bra-like ones I found at Charlotte Russe. I tried regular sports bras, but the elastic at the bottom hurts. The downside on the ones I use is that they aren't cotton so it doesn't allow my breast to breathe. But they're okay for short time use and have a little padding.

NATURAL ALTERNATIVES: I tried acupuncture which seemed to help with the pain. I was given some Chinese herbals, which I just started. I started juicing and noticed a great improvement. I stick to an anti-inflammatory diet as best as possible. Basically, lots of fish, veggies, fruit, and chicken. No nightshade vegetables,dairy, sugar, grains, processed foods, alcohol or anything that contains processed oils. I haven't been able to give up coffee, and notice some itching and pain as soon as I attempt a second cup. I take a multivitamin and fish oil. I also use Barlean's flax oil in my smoothies. To avoid fish oil contamination (high mercury), look up www.ifosprogram.com for tested and posted fish oil samples submitted by manufacturers. It will tell you the brands, lot #'s, and expiration dates of "good" batches. I also read about "Curamin" by Terry Naturally, that is supposed to be great for inflammation. Haven't tried it yet because I want to see how the Chinese herbals work. Beneficial herbs/foods: tumeric, oregano, garlic, green tea, nuts/seeds, walnuts, blueberries, ginger, fish (Pacific), grapeseed, bioflavanoids, and boswellian.

RESEARCH I'VE DONE:
I went to the library and checked out the books, "The Inflammation Syndrome" by Jack Challem, "The Anti-Inflammation Zone" by Dr. Barry Sears, "Eating Well For Optimum Health" by Andrew Weil, as well as some others. These books don't talk about GM in particular and more about joint and gut inflammation, but thought it could be useful. It is believed that inflammation begins when there is an imbalance of the oils we eat. It used to be that we would eat 2:1 ratio of omega-6 to omega-3 fats. Our modern diet is now at about 20:1. Heart disease, diabetes, and cancer are initiated by silent inflammation, which comes from the overproduction of the pro-inflammatory eicosanoids. Overall, it is essential to eat more Omega-3 oils (fish, flaxseed, hemp oils, herring, mackerel, purslane, salmon, sardines, soybeans, walnuts and soybean oil) and to eat less Omega 6 sources (corn oil, cottonseed oil, grapeseed oil, meat, peanut oil, poultry, safflower oil, sesame oil, soybean oil, and sunflower) Soybean oil is both. I've learned that inflammation is basically due to pro-inflammatory hormones(prostaglandins, ctyokines, and histamines). Because this started when I was pregnant, I wonder what role my hormones played and whether this will heal once my hormones regulate. (Stopped breastfeeding and will not take any contraceptives to allow my hormones to normalize.) Read somewhere that it is believed contraceptive use could be the cause of GM. Also read that casein (found in milk) is a cause of inflammation. About 2-3 months before this started, I was drinking casein powder shakes to help build muscle. Wonder if this was a cause as well.

Please check out some of these books to get the full information. I tried to sum it up as best as possible but don't want to give misleading information. Some things I learned were contradictory from one text to another.
  
2 Comments
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This is all great information! I think it's awesome that you took the time out to share all this information.  

Did you ask your doctor to test for GM or did they know to test for it?

I'm just starting acupuncture, but I'm curious about your herbs that you were given... Is it something you take by mouth or a powder to be mixed?

Thanks again for sharing!  I hope you are doing well!!!!!
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The drs. didn't know what it was. My husband is military, so I was going to the Navy hospital. I saw several "specialists", but finally the radiologist suggested GM after seeing the ultrasound. The breast surgeon and radiologist collaborated on this. They went back to look at the lab results and noticed that they didn't specifically test for GM. The surgeon was hesitant to do another biopsy because he didn't want to pierce a milk duct and cause a possible fistula when my milk came down. They concluded GM because no fever, no reaction to antibiotics, and on the ultrasound you could see the movement of fluid (pus) in several connected areas throughout my breast.

      The herbs I was given are pills called, Dan Zhi by Great Nature Classics. I need to research each herb because I think it is mostly for wound healing rather than autoimmune issues.
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