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granulomatous mastitis User Group
Has anyone in this forum actually recovered?
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
229 members
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Has anyone in this forum actually recovered?

How incredible to find this forum.  I think I'm learning more from the discussions than from the myriad of specialists I've visited (as wonderful as they have been).  Mostly it's a revelation to hear other people with similar experiences...thank you!  Having GM or the symptoms of GM can be kind of crazy making.

HISTORY (whine list)
I've had symptoms of GM for a year with 7-8  painful lumps in my left breast, several biopsies, several drainages. They seem to grow, erupt, then fade and another grows, erupts and fades and on and on.  My sleep is disrupted from the pain, etc., etc.  and I have extreme fatigue.  I've seen a surgeon, infectious disease specialist and rheumatologist without any concrete diagnosis.  And I'm just now beginning to see a naturopath.

A few people wrote about experiencing fatigue, and I'm wondering if everyone with GM has fatigue or only some.  Suppose it depends on the underlying cause of your GM?  Specialists focus on the science fiction drama unfolding in my left breast and don't seem as interested in the less obvious symptoms.  

I'm also curious how you manage to continue working?  I took a couple months off and am now at half time and dream of having my energy filled life back.

I wish you all the best.  And thanks again for everyone posting their histories and thoughts, it sure beats reading Medical Journals.
17 Comments
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Hi! and welcome to the forum!
Well after 1 month without abscesses, I have 3 now! I have had GM since July 2012.
So, not recovered!
Take care
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Avatar_f_tn
Hi!

I had GM for 14 months. I have recovered and have been free of abscesses for 7 months. The recovery is very slow and you need to be patient with your body.

I worked through my entire GM experience. I did take a few days off when I had surgery and a couple of days of sick time because I was leaking through my gauge or if I had an in office procedure that was too painful to return to work. A few times an executive from my office would send me home because I was in so much pain. Otherwise, I kept going.

My fatigue was mostly related to the steroids I was on. I was wiped out.

I was fortune to work for a company that supported me through this experience. I was placed on short-term disability and intermittent FMLA so my job was protected (living in Minnesota, USA).

I would say what helped me recover was my diet - eating berries, drinking pomegranate concentrate and aloe vera juice with grape juice. I also stayed positive. The greatest help I found was from the wound care team, nurse and doctor. All were heavily involved in my treatment.

Stay strong :)
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Avatar_f_tn
Hi, and thanks for your note.  Sounds exactly how mine has progressed, kind of unpredictable.  I had a month or so without and then a few show up again.  thanks again, and good luck.
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Hi,
Sooo great to hear you've been free of abscesses.  I've read that GM can sometimes run a course of about 14 months.  

Thanks for summarizing your experience,I find it reassuring and helpful to hear what other people have gone through....makes me feel like this will end one day!  I haven't been on steroids, not sure where the fatigue comes from.

And thanks for the reminder to be patient and for your positive attitude!  I'm just now starting a big change with my diet also and beginning to feel the effects.  I'm eating mostly vegan and avoiding nightshade foods such as tomatoes, potatoes and eggplant.  Apparently these foods are to be avoided if you have any kind of inflammatory condition.  Maybe I'll try your pomegranate, aloe vera drink.

Thanks again,  
and take care
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Avatar_f_tn
Yes, I cured myself after my doctors could not cure me with prednisone or methotrexate (2010) (granted, we did not give the methotrexate enough time to work).  My disease was aggressive.  My breast looked like it came out of a zombie movie and I was in so much pain.  I used poultices made with calcium bentonite clay around the clock for basically a year (2011).  I was proud to be off drugs and in control of the healing process.  I consider myself to be on "maintenance" now.  I wear the clay every other night.
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Avatar_f_tn
As far as I can see on here my IGM seems to be different from everyone elses. Mine first presented back in 2009 and went away on its own before I was diagnosed without any treatment. Then in 2011 it started again while I was living in Belgium. Luckily I was diagnosed quickly and was put on high dose steroids. It went away within 3 weeks without any leakage. My breast has gone back to normal. Although I will always expect it to re occur it has left me confused because I do not fall into the normal pattern of this disease.  
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5265722_tn?1365820884
I'm still dealing with my disease 7 months later sighs.  My incisional wound is finally smaller after 4 months and every other two weeks a new abcess (abscess) comes out, I've had this new one for about two weeks now and it does hurt and the outside of my breast where the abcess (abscess) is at is a little red.  I suppose in December they want me to go on methotrexate I'm pretty nervous about that.  
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1822062_tn?1317283366
Hi there,
Here is my story and recovery :-)

I was diagnosed in 2011, it was just a lump at first. Then after a series of biopsies and months on steroid, it got worse, with lots of agonizing pain, oozing wounds and sleepless night. When i switched from steroids to antibiotics it got better but the lump wasnt going anywhere.

Then, i decided to stop everything to try and have another baby. I figured, i might be losing my breasts, so i want to have another chance at breastfeeding before that. I sailed through the pregnancy without a peep from my GM. I manage to 100% breastfeed my baby, even with the affected breast, even though it wasnt easy at 1st. Now 11 months on, i think my lump has disappear! Im still praying and keeping am eye on it, though
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Avatar_f_tn
Hi,
Great to hear your success with the bentonite clay, I'm definitely going to try it although one year around-the-clock use of clay sounds like a lot of work.  I tried cabbage poultices that seemed to help as well, but I found preparing the poultices every day (and washing the stinky towels) a bit of a grind on top of the fatigue I experience.

I also wonder about the underlying cause for this disease and whether applying external poultices helps but may not cure?  I don't know, just some thoughts.

Thanks for your post, and I will definitely try the clay.


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Hi
I saw a rheumatologist recently who also recommended methotrexate and I'm nervous about it as well.  I don't really like the idea of feeling worse than I already feel, and apparently it can feel like a bad flu.

I've been holding off on the medications so far but still have the disease full force.  I tried fasting this summer for 8 days with absolutely incredible results, but my symptoms returned when I went off the fast.  I'm considering the TrueNorth Health Center in California that specializes in medically supervised fasts.  I've had symptoms for over a year, and suppose I'm gettin'' desperate. ha.  :)
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Wow, interesting.  What a relief to not have symptoms. Hope it continues for you. :)
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I've been "GM Free" in my initial infected breast for close to 3 years (this was done with a surgery and being very closely monitored/drains/etc after). Unfortunately I now have GM in the other breast. My "story" is one here, sorry I've been absent for a long time!
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for how long you had GM in your initial infected breast?
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I had GM in my initial infected breast (the right) for a little under 2 years (from approx date of diagnosis to date of partial mastectomy) - I should add, that the "recovery" from my "final" surgery on that breast was a VERY long process, that took several months to properly heal, nonetheless without flare up. Since then (my partial mastectomy was done in 11/2010), I've gone without incident in that breast!
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4628530_tn?1369112686
Hi! I've been abscess free since July. I'm not convinced I'm completely healed but it did taper off towards the end and the last abscess was literally a few drops. My rheumatologist put me on hydroxychloriquine (brand name, Plaquenil). It is an anti-malaria drug. It is less harsh than steroids or methotrexate. We are not sure if the medication began to work or if was just the regulation of my hormones. I was diagnosed while pregnant last fall, and delivered at the end of April. The large lump I had (size of about 3 fingers, is now about the size of a penny. I have no more pain. I get occasional pricks from a huge scar healing on my areola where they put in a penrose drain for a month and a half, but that's really it. My breast is somewhat smaller and deformed from where the tissue underneath looks like it's been eaten away. I'm hoping this is the end of it. Good luck to you!
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Avatar_f_tn
I'm so happy to hear you are healing, that's so awesome!  Please continue to share your progress even after you are 100%

I have 2 questions, did you have abscess in just one spot or did you have several in different spots of the affected breast?

Did any doctor suggest a mammogram to check for any breast cancer
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Just a note: During diagnosis, I definitely had a mammogram, ultrasound, and needle biopsy, I also had a lumpectomy - all prior to being diagnosed - and to screen for cancer.

Since then. I have routine ultrasounds, even after GM "resolved" in my initial breast. Any time I get a flare up, if it's not in a spot that has previously had GM, it's ALWAYS ultra sounded and unless it looks different than a cyst or abscess, it is NOT biopsied...
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