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granulomatous mastitis User Group
Overwhelmed for far too long
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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Overwhelmed for far too long

This is a first for me, forums. Sorry for the life story to follow. In 93 I had stopped breast feeding and ended up with mastitis and surgery in left breast. Encountered a post surgical infection tested as strep. in the 12 years following surgery I had 28 procedures to "get the infected tissue out" never ending masses infected with nasty goo smelly nastiness. The site would rupture any where from a few tablespoons to 1/2 cup of gross. All the while nothing changed it or made it better. 2005 it just stopped. OVERJOYED!!!!. 2011 I fell hitting my right breast on the corner of a box. 3 weeks later in docs office... 1 year 3 months later 4 more surgeries and weekly visits to wound clinic all to no avail, another new doc says I have this granulomatous mastitis I look it up and find you all. @ months back the left breast starts filling and ruptures after 7 years of healed. I dont know what to do or where to go for best info. 3 docs want to cut off the breasts and say they cant say that this wont continue in the surgery site. I guess at this point I am just so overwhelmed. What tests to confirm diagnosis? How closely tied to auto immune diseases is this. (I have a slew of them). If I did this wrong or didn't follow protocol please let me know. I am in Northern Ca and willing to travel if anyone knows of docs who work with this.
4 Comments
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I have always been told by any doctors that I have seen that taking the breast won't really help in the long run.  
If you read through the posts you will find women here who have had it return regardless of breast removal.  
If you read through the posts I am sure you will find a lot of helpful information. (different drugs, slay, diet changes)   Maybe even a doctor in your region who knows this illness.  
I am in Ontario, Canada and have some doctors at a hospital in Toronto who are my caregivers.  I am currently waiting for some test results before I can try some other drugs besides the steroids.   Prednisone will help but has awful side effects.  Have you tried Prednisone?
I found that it is important to arm yourself with as much information as you can before you see a doctor.  Lots of them don't know this illness and also become quite overwhelmed by it.  My GP really appreciates this forum and the info I bring to him from here.  Even though he is not my caregiver for this condition anymore, he is my first point of contact for things I need to deal with it when it does flare up.  
Good luck to you! Keep letting us know how it is going.  .
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Avatar_f_tn
Thank you for the response. I have SLE + a multitude of other autoimmune diseases and have taken prednisone for the SLE for years. It helps the antibiotic work by slowing down my immune system. I know that sounds strange, however, it works for me. I did read up on removal and I have decided in no way shape or form will I do this. I have not found any info on the numbers, how many have these ( I found 3 variants of this disease) breast diseases? afflictions? I am still reeling that I have dealt with this in one breast since 93 and now the other over a year and no one in that time ever gave it a name. They just kept cutting away. I am ever so tired, ever so emotionally drained. I am grateful to have found this site and thank you again for the time to respond to me.
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Avatar_f_tn
Thank you for the response. I have SLE + a multitude of other autoimmune diseases and have taken prednisone for the SLE for years. It helps the antibiotic work by slowing down my immune system. I know that sounds strange, however, it works for me. I did read up on removal and I have decided in no way shape or form will I do this. I have not found any info on the numbers, how many have these ( I found 3 variants of this disease) breast diseases? afflictions? I am still reeling that I have dealt with this in one breast since 93 and now the other over a year and no one in that time ever gave it a name. They just kept cutting away. I am ever so tired, ever so emotionally drained. I am grateful to have found this site and thank you again for the time to respond to me.
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Avatar_f_tn
Hi Onecynth-  I am in Northern California too.  I see Dr. Laura Esserman, a breast surgeon at UCSF and Dr. Andrew Gross, A Rheumatologist also at UCSF.  I feel like I am getting excellent care, even thought the disease is rare and there is not a lot know about it.  At this point, most of the treatment is coming from Dr. Gross.  Dr. Esserman was the one who diagnosed it and sent me to Dr. Gross.  I still see her occasionally though too.
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