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granulomatous mastitis Community
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Avatar universal

Hi!-new member here-question about GM

Hi ladies, I'm glad I found this group and other ladies that can relate to this rare condition.  I am a new mom with a 10 month old baby and I'm currently breastfeeding.  My GM story began in January when I noticed a lump on my right breast at about 10 o'clock.  I thought it was a clogged duct since I had previously gotten one and was able to massage it away.  However, this one in particular would not go away after a few days, but I thought I would just let it be since it must be related to breastfeeding and didn't really hurt. (I must also mention that right around this time I also got mastitis at about 7 o'clock on same breast.  I didn't go to the doctor because I hate taking medication, and I was not running a fever, my breast was just red.  The mastitis eventually went away after about 1.5 weeks).  I had a checkup coming up with my OB, and since the lump wouldn't go away I decided to mention it to her and she recommended I get an ultrasound done, but she too thought it was a clogged duct.  I finally got an ultrasound appointment in March and the technician called the doctor after about 30 mins of taking lots of ultrasounds pics.  The doctor recommended I get a mammogram same day which I'd never had before (I'm 29).  After various painful mammograms, the doctor still wasn't too certain if it was a malign lump, so she had me do a biopsy same day.  Results came back a week later and they said I had granulomatous mastitis.   I googled it right away, and as most of you know, there's barely any info out there on it, much the less, a cure!  So here are my questions: 1) I noticed that the lump got worse after the fine needle biopsy (I don't have any puss to drain, it's just a hard mass), anyone else feel the same way?  2) Were any of you breastfeeding when this disease appeared on your breast/got diagnosed? 3) If so, did GM get better or worse after you weaned? and 4) How many of you are completely cured and if so, what did you do/take to get cured?  Sorry for all the questions, but I just have so many that I want answered and no one (professionals) seem to know!  Thanks for reading and replying!
4 Responses
Avatar universal
Welcome!  I'm glad you found this group, it's so helpful to read other women's experiences, especially when doctors don't know how to treat this disease.

To answer your questions.. I never did a fine needle aspiration. I only had incision and drainages done.  But every single time I had my abscesses drained I noticed it made it worse!  Or if I saw my surgeon he would pinch the abscess to fell if it had fluid (jerk! That hurt so bad), within 1-2 days I had to get it drained.  Trauma to the abscess or the breast makes it worse or creates more abscesses.  After I realized that (through this forum) I let them open on their own. Eventually didn't get new abscesses.

I wasn't breast feeding.  I did breastfeed my 2 kids, but when I got GM, it had been 3.5 years after I stopped breast feeding.

I'm not sure if I'm cured per say.  All my abscesses have closed and healed, I have scars now.  I had GMfor 9 months and I have been abscess free for 9 months. My GM breast is smaller. The lumps are gone.  The breast does feel lumpy in some areas, but doctors say it's probably scar tissue.  Plus, because it's smaller I think you feel more.  I noticed on the forum many women saying they healed naturally or they just let it run it's course, so I decided to do the same.  I saw a naturopath doctor, she changed my diet (Paleo diet), put me on turmeric (curcumin), I did acupuncture (there are specific points for breast abscesses), I used doterra oils (frankincense -topically and orally), and I had an overall positive attitude.  Everyday I imagined myself happy and abscess free, I believe in the law if attraction.  I think everything helped me heal!

Naturopath doctors, acupuncturists, Indian doctors... It seems like they understand better how body works.  And ice learned that if you're body is in a healthy state, it can heal itself.  It's a pretty amazing machine.

You should take the time to read through old posts, it's really helpful. I hope you are able to find healing!
Avatar universal
Hi Kuulei04,
Thanks so much for sharing your experience and what's worked to bring healing to you. So the 10oclok abscess burst open two nights ago while I slept. I woke up the following morning to what I thought was a really sweaty armpit, sorry TMI!  Turned out it was the abscess. I'd read that it could happen, but had no idea it would happen to me since I wasn't in that much excruciating pain. I quickly googled what to do with a burst abscess and most medial forums recommend seeing a doctor or going to the ER right away, but I opted not to because over the course of this abscess journey I've noticed that going to the doctors only makes the abscess worse with them touching, poking and pressing on it.  The opening is probably only the size of small button and I've been cleaning it like every 2 hours, putting a mixture of turmeric and vitamin E and then covering it with a breastfeeding pad. I really hope that it heals quickly and that I was able to get all the puss out and most importantly, that it doesn't come back! How long after your burst did it take for it to heal/close up? Did the bruise like color ever go away? Mine is the diameter of a golf ball and it's bruise like in color (purple and red). Thanks again for your input!  I've been reading all the postings and they're are of so much help! Thank God that others can relate to me. Like you, I have faith in God that one day I'll be completely healed of this. All the best to you!
Avatar universal
I agree, poking, draining, cutting them does make it worse!  I had my first incision done, 1 week later a new abscess, 1 week later another abscess.  

When my abscesses opened on their own, I would massage the area to get out as much of the fluid as I could (just like you did) and I also used breast pads daily to allow them to drain.  I changed the pads 2-3 times a day depending how much fluid was coming out.  My abscesses would take forever to close... 1 month, sometimes 2 months!! Even the tiniest opening would leak the smallest amount of fluid for long periods of time. I never wanted to rush into them closing because I wanted to be sure everything came out that needed to or I think It would just abscess again.

The purple area eventually fades and gets smaller and you're left with just scars.  I downloaded an app on my phone that allowed me to keep photos in a password protected app and I took photos every week of my breast.  When you look at it everyday you don't realize how it changes.  Then I used a collage app to make side by side comparisons.  This helped me stay positive, seeing the improvements.  I also tried to add text to the photos to keep them dated. I had about  3-4 different areas where abscesses formed.  

Also I got a biopsy at about 4 months in to confirm I had GM (My mom figured if out before my doctors did) and the biopsy site and 2 smaller holes next to it abscessed.  Just more proof that trauma to the breast causes these abscesses.

Hope this helps!! Take care, talk to you again soon
Avatar universal
Hi Kuulie, one more question. How do you know if the abscess is healing? As you know, my abscess ruptured las Saturday but since then the wound looks the same. It is no longer draining puss and it doesn't hurst unless the breast pad dries up on it and I pull it to clean it. It does sometimes leak a clear fluid but doesn't look like it has puss. And the breast pad does sometimes have a slight blood stain on it (TMI, sorry!) I'm just afraid that it's not healing correctly and it may get worse. I stopped using hydrogen peroxide because I've read that it delays the healing process and instead opted for saline water which I use every 3 hours or so. Thanks again for your comments.
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