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granulomatous mastitis User Group
Recently Diagnosed with GM: VERY SCARED: PLZ HELP ALL
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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Recently Diagnosed with GM: VERY SCARED: PLZ HELP ALL

Hello All,

Little about me.. I’m 32 year old with one 4 year old girl. Yesterday I got diagnosed with this scary disease GM. After 7 weeks of suffering which no doctor has been able to figure out. I took 4 types of antibiotics also took 4 days of IV antibiotics still did not helped me. I have moved recently from US to Sydney for family and work. I went to the Sydney Cancer Center as my GP referred me to the Breast Surgeon/Oncologist and he got my Biopsy and Memmo done which confirmed me that I have GM.  My doc has suggested me to wait for some time and get the drainage done if I get pus and then put me on steroids and if it will not go then go for Mastectomy. I’m really scared as Doc said this is a chronic disease which take long time and can come back.

All please help me as where should I start from. Is anyone from Sydney or Australia in this forum suffering from GM and if yes then please share your doc details that have been successful in treating you.

What sought of Steroids you all have been taking and what are the side effects of it.

Should I go back to US if there is the best doctor who has treated anyone completely?

All advices are welcome as I’m totally lost coz no one knows about this disease and I’m so glad to find this forum.

Thanks all.
-Vinni
9 Comments
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Aloha Vinni!  I'm so sorry that you also have to deal with this disease!  But please, do not be scared.  Read through all the old posts on this forum, educate yourself and be your own advocate and just be determined to beat this disease. The posts date back to 2009 from what I remember.  If you read the old posts you can learn what other women have experienced and you can decide for yourself how you want to handle your situation or treatment.  I personally decided to go with healing Naturally and I will give you more info about that after I answer a couple of your questions.

Regarding steroids, there is a bit of info on this forum about women who have done a year or so of steroid treatment.  Steroids will reduce thanxie inflammation in your breast, but some women say that it returns when they stop the steroids.  Other women have taken methotrexate as well.  I personally chose not to go with these treatments as of yet.  About 3-4 weeks into my disease, I ended up getting Erythema Nodosum on my 2 legs (around my knees) and was prescribed Prednisone to treat this.  It helped treat my E.N. right away and I noticed it also decreased the inflammation in my breast significantly (not all the way).  I didn't realize it until later, but when I started to taper off Prednisone (you can not just stop taking it, you have to taper off it slowly) I began to have bad bouts of anxiety.  I would get anxiety (tightness in my throat, hard time breathing well) and I didn't know why I had it, and it would last for a whole day, half a day, or several hours.  At times it came at night and caused me not to sleep.  I had constipation, nights I couldn't sleep, days where I felt fatigue.  Now I have a mysterious cough that I think could be related to the steroids, and slight pains in my head too.  If you read back on the forum, another member mentioned reading a book called COPING WITH PREDNISONE and if you choose to take this route, I would suggest reading it.  I did not read it, but it probably would have helped me deal with the side effects because most times I did not realize that what I was experiencing was a side effect.  Some women experience weight gain, etc.  I suggest researching the use of prednisone just to educate yourself.

My next suggestion is that you please go back and read the posts on this forum.  So many doctors have never seen this disease, many don't know how to succcessfully treat the disease or just do not understand the symptoms of the disease.  I am so thankful for this forum, as I have read through it, and it has helped me to cope with the disease because now I know that I am not crazy and alone and it also helped me to decide how I want to treat the disease (Naturally with natural medicines). I promise you will learn alot from reading the posts here.  And reading back will likely answer alot of questions you may have. It is interesting because on this forum, it's like we are teaching each other and learning from each other and we are our best doctors because we know our bodies.

Here is a little about me and my decisions.  I am almost 31 yrs old, have 2 kids (4 & 6 yrs. old).  I got this disease on December 24, 2012 (Christmas Eve) and have been dealing with it since and I was only diagnosed with GM officially TODAY!  (Hooray, finally a diagnoses!!)  I have had 5 incision and drainages to drain the pus but I learned today from my doctor (whom has seen this before) that it's probably best to do an ultra-sound guided needle aspiration to drain any fluid.  Normally a radiologist doctor will do this, but your GP or surgeon will refer you to them.  Unfortunately my surgeon has been doing I&Ds with my pus, because that's what they do and that's how surgeons typically treat.  But the radiologist said today that our bodies take longer to heal with I&Ds. I read that symptoms have returned after getting off the steroid and methotrexate treatments and immediately decided that I do not want to put such toxins in my body and would like to try to heal with more natural medicines.  So I started to follow an Anti-Inflammatory diet and staying away from foods that cause inflammation (you can google to read which foods to avoid).  I also started juicing, borrowing my mother in law's juicer.  I juice only once a day, cause it can be costly.  You have to put quite a bit of juice to make enough for one drink.  And most of all, another member on the forum, her name is Paree, emailed me and said that her Ayurvedic doctor suggested she take 1/2 teaspoon Turmeric powder with 1/2 glass warm water or milk.  She does this along with a ginger powder/castor oil mixture as well.  When her symptoms of GM returned in August, she started this and is now cured of GM and has no mass in her breast.  If you research turmeric you will learn that it naturally fights inflammation (just what we need!).  So I have decided to do this turmeric treatment as well!  For the first 3 I recently decided to purchase turmeric capsules.  If you go with this route, be sure to buy the capsules with 95% curcumin (the active ingredient in turmeric) and Piperine or Black pepper (for easier digesting of the GI tract).  I'm hoping the capsules will be as effective as the powder itself.  I also started drinking hot Green Tea (fights inflammation) and eating lots of fruits and vegetables (organic when possible). I decided that food is medicine and so many people have cured themselves of diseases and just by eating better or juicing.  I suggest you do your own reasearch if you are going to go with this method and consulting a doctor and/or a naturopath to help you create a good treatment plan.  And decide for yourself what will work for you.  Now that I have been diagnosed, I am considering seeing a naturopath doctor to help me with a plan.

If you have any questions, just ask us!  Or your doctor.  But also, if you can take the time to read the past posts on this forum, it will likely answer alot of your questions.  I wish you all the best and happy healing!  Stay positive, think positive and you will heal!  Keep us informed on this forum and let us know how things are going and ask questions when you need to.  I hope this has helped you!
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Hi, I cannot thank you enough for taking so much time and writing for me. I know that you are in pain too and it is very difficult to cope with this situation. I have been also struggling this since 2 months and not able to cure it. As suggested by you I have read almost all the post and got some knowledge about GM. Just like you I also want to treat it naturally but just not sure how long it will take and will I be able to take the suffering. I'm going to meet my doc again this Thursday and will be going to one more doc in Sydney who has treated GM patient from this forum. I wanna know what they will say about my situation. After reading lots of post I have also started on anti inflammatory diet but I'm not sure if it's helping me or not yet coz I'm on painkillers all-the time. My daily like is getting so much effected by this pain. I'm working women and having a Manager job is making more difficult as I have so many responsibilities. Then i have a small daughter and I cannot spend quality time. I'm so fatigued and tired so much. I have flu like feeling all the time. I'm consulting few docs I will keep you and all posted how I go.  You also keep letting me know which natural remedies are you applying and how are they effecting your GM. Hope we all can heal soon. thanks gaian.
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Avatar_f_tn
I took steriods for 20 weeks. This reduced the inflammation and the pain for me. I still would have flare ups, but for the most part this helped me. Once I was done with the steriods, a few more flare ups happened, but I healed up. Overall my GM experience lasted 14 months. The first 5 months were by far the most painful and the peak of the illness. The healing was long...very long. A new abcess (abscess) would appear, and over time would become smaller.

My doctor was learning this with me...do not apply heat, that makes it worse. Eat foods that reduce inflammation. Rest when you can.
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I'm on the same boat as you, is yours very inflamed and red? I just had an incisional biopsy last week and officially I was diagnosed with GM after three months.  Pain has only gotten worse and well I'm still healing from my incision I was just wondering if anyone else that has GM has red around their breast?
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Avatar_f_tn
hi! my breast was red and I had an inverted nipple as well...my breast also was deformed..then abscesses started to appear and with TIME and loads of PATIENCE got a lot better.
I was emotionally destroyed for the firsts 6 months...in July will be 1 year with this disease...until I learned (by hard) that you need to be strong and very very very patience with GM.
Veronica
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Hi and welcome! I am currently pregnant and have had no choice but to ride this out and try only natural things. My inflammation started in November, was given 3 types of antibiotics, a mammogram, a biopsy and had a penrose drain put in for about a month and a half (because packing the abcesses was more than I could handle). I saw an acupuncturist and that helped somewhat. He prescribed some loose herbs and some chinese herbal pills, "Dan Zhi" by Great Nature Classics, which I have yet to try because I would rather wait until the baby is born. However, I looked up the combination of each herb and I can't wait to try.

I started juicing and changed my diet and that seemed to really help. The abcesses would come open again, but not as intense. Daily, I would let my breast "air out." I would lay on my side and let it drain onto a gauze because I wanted to get as much pus out before it would seal up. I would lightly press or massage to get it out. Be careful about this though because all the pus pockets are connected in some areas and you don't want to aggravate other areas. Juicing is sometimes time consuming and frustrating.

This is my routine:
Once I buy my veggies, I immediately soak them in the sink with a little white vinegar and salt. I rinse and dry.
I then prep them into big freezer bags by recipe. I cut and peel, leaving them as whole as possible. (The belief is that they contain more "life energy" if you peel and cut right before juicing.)
I prepare about a good 3-4 days worth of bags.
In the morning, I juice a large bag to last me for the rest of the day. (about 2 large or 3 smaller glasses for the day). I do this because I hate washing all the juicer parts, so I just do it once a day instead of 3.
As I'm juicing, I fill the sink with hot soapy water, so that when I'm done, I simply swish the parts around and rinse. (The filter basket will need scrubbing).

I also changed my diet by eating less red meat, less dairy like cheese, milk, and butter. No coffee or sugary drinks. Lots of water and green tea (not bottled). I add a little honey to my morning hot green tea.

all of these things have helped, but I have honestly regressed recently because I crave so much junk! It's hard when you're pregnant :/

Oh, and my mantra is psalm 147.3: Heal my brokenheart and bind my  wounds

Gotta go pick up my son from preschool. Hope this helps and don't get discouraged :)
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I've only been with it for three months, in the past week after my incisional biopsy it began to become red and well today I had what they called a blister, supposedly caused by the incision that I'm still healing from. Has this happened to anyone? I really freaked out this morning seeing a bubble of dark red that I thought was just blood, I immediately went to the doctors, they just gave me gauze and tape to keep changing it because it is draining. I'm wondering if blister types are referred to as an abscess??? I still have so many questions.  Last night I also started an anti-inflammatory diet, today was good, although I must say I miss coffee very much but I know it's not good for my body.  What do you do Veronica to help with the redness of the breast?  I really am glad I found this support group because I really thought I was alone in this, I have been quite depressed about this but I'm seeing all of these women and yourself dealing with this that it makes me have hope that perhaps one day I'll be okay again.
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Avatar_f_tn
  Brendy, you will see that with time, your breast is going to change, shape and color.
By July 2012, when my GM started, as I mentioned before the upper part of my breast was red had a big mass and my nipple was inverted; 3 months after antibiotics and no changes I started taking Prednisone 20mg a day..within 2 weeks the first abscess drained from that area, it was a huge abscess by the way..what looked like an extra nipple as another girl of this forum mentioned.
I took prednisone for about 2 months (20 mg a day) everything was wonderful my breast was looking so good!..until I decided no t to take more prednisone and start the tapering..oh God! my breast was red again, and with each abscess I had, a red and very hot skin appeared until it drained and with time I just have the scar (purple color) left..
When I decided stop taking prednisone, I started with shots of Bee Venom..I know it may sound funny, but helped me a lot with the joint pains as well..I am also doing cold clothes...Aloe plant directly in to my skin (that helps a lot)..but I think that the most important thing is to have patience..patience with the disease, with the way your breast looks..with the kind of bras your body allows you to wear (I call them granny bras..are so horrible they give you the "pointing to the people look" but so comfortable!)..patience with everything Brendy.
It's not nice to look at your self in the mirror and see what is going on with your body.
anyways..I do suggest you to go with Aloe Vera plants..do you have that around? is it easy to find there? you just get one leave slide - you peel just one side of it and massage your breast..with the rest you put it in the fridge and next day or at night you do the same.
Right now, my breast has (hold on let me count them)...5 scars..one tinny abscess and some areas where I can tell some more abscesses will appear..but somehow looks like is giving me an abscess free period by now.
I had blood blisters, in the biopsy scar, it turned blue-ish ,  then another abscess drained from that scar and the blister disappeared...I think it drained with the abscess "pus".
Just remember that this is a recap of almost 1 year with GM..this is why I say that patience is the key.
Take care!
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Avatar_m_tn
I'm one of the survivor.  I have fully recovered from GM  1yr ago. I had been suffering for 2yrs. Remember do not do anything about just wait for 2yrs and it will recover itself.  No medication needed. Surgery will make it worst. It's caused by hormones so nothing dr can do. Now I left with the scars.  Looking for treatment to get off of this ugly scars
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