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granulomatous mastitis Community
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Avatar universal

Support and suggestions needed, please

First, I cannot tell you how relieved I am to find information about this horrible disease. Here is only some of my history:
* (2) painful lumps appeared in December 2014
* Nipple discharge- white/yellow started in beginning of February 2015
* Mamo & ultrasound- end of February 2015
* (2) biopsies completed on lumps-both benign end Feb.
* Within (2) weeks 1 biopsy location became infected, surgeon opened it to drain it and started antibiotics.
* By 3 weeks, 3/4 of my breast was swollen, rock hard and three times the size of my other one.
* I continued antibiotics, 5 different ones, for 7 weeks total because they thought it was just a bad infection.
* May 12- surgeon took 4 more biopsies and cultured them-still benign. Reopened incision area and placed a drainage tube in.
* May 20- surgeon discussed the possibility of my having Granulomatous Mastitis. Started me on steroids.
* May 24- incision area opened & was draining a creamy, looking substance. ER & surgeon said its not infected.
* May 25- surgeon recommend staying on steroids and is referring me to a specialist Stateside. Discussed that I may need a Mastectomy.

Currently, one incision is still open and draining and in a different location is getting ready to "pop" any day now. How many have had success with a Mastectomy? I HATE these steroids and I've already been in so much pain that I do not want to go on the Met...(sp?) pills.

I hope everyone gets better soon. We need to advocate for our health!

1 Responses
Avatar universal

FYI - we have a private Facebook group for people who have GM.  
Search on Facebook for "Granulomatous lobular mastitis" to find the group and submit a request to join.
You must join this user group in order to participate in this discussion.
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