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granulomatous mastitis User Group
Breast Mastitis
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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Breast Mastitis

Does anyone see an endocrinologists or other specialist?

About 15 years ago I was diagnosed with high levels of prolactin and see an endrocrinologist-i take a priscription (prescription) drug  called Dostnix/Cabergoline. Every so often i get breast mastitis, which hurts, they drian it by surgery because antibiotics dont seem to work and sometimes they do. Basically is there anyone who goes through what i go through? as i writing this i am going through it now, im a lil scared beacause i was int the hospital for six days-getting meds through ivy and i still have inflamed breast tissue-worst case, doc said to me if it doesnt get better we will remove your breast tissue and put implants-im thinking is this something i really want?
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I as well am on cabergoline for elevated prolactin level secondary to a microadenoma on my pituitary.  Almost 2 years ago I presented with what seemed like mastitis however did not respond to antibiotics, I spent a week in the hospital, had surgery, basically went through hell and back to finally get diagnosed with IGM.  I told my whole story in an earlier post.  I have heard several other women with IGM who also have elevated prolactin, coincedence??  who the heck knows.  Anyhow, read about the disease idiopathic granulomatous mastitis, see if it sounds familiar to what you're going through and than talk to your MD about it.  It is not an easy diagnosis to have but at least you would know and could try and deal with it and how it affects your  life.  I wish you all the best, keep us updated.  
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you should read other posts of women with this diagnosis for sure.  A biopsy and some other tests will help wit this.  You make have to take information on this disease to your doctor as many don't know much about it.  
It might save you having a mastectomy.  I know some women here have had them but I am still not convinced that a mastectomy will help with all of the other auto-immune disease related symptoms.  Goof luck!  There are lots of good resources available through this forum. Look for a doctor too who will listen.
Take care!
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thank you for the information, i will defiantly look into this and bring it up with my doctors.
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I have elevated prolactin levels too. I had a brain scan,which found a cyst on my pineal gland, but nothing on my pituitary gland.
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