563?1263745088
granulomatous mastitis User Group
I guess it's time
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
258 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

I guess it's time

I've been reading this forum on and off since March when the possibility of GM was mentioned by one of the many doctors I've seen. My name is Noelle, I'm 25 years old. I'm a single mom to my 4 year old daughter (who I breast fed until she was 15 months old). I'm currently finishing my last quarter of prerequisites before I apply to nursing school- I've been working my butt off for the last two years so that my GPA is competitive enough to get in.

My medical history is a lot like many of yours. In March of 2011 I presented with a lump on my right breast at about 11 o'clock (if you were facing me). After a round of antibiotics and my lump growing, they sent me for an ultrasound where they were able to measure the mass- 3.5x3cm). After the ultrasound, I was referred to a breast specialist. The breast specialist sent me to get aspirated to culture; during an ultrasound in preparation for the aspiration, it was discovered that my lump was absolutely solid with no fluid to aspirate. At this point, I was utterly exhausted, frustrated that no one had any answers, and sick and tired of being shipped here and there for this test or that procedure. Due to the lack of fluid, I was scheduled for an ultrasound guided core biopsy. The biopsy went fine- painless and relatively quick. I even had my mom make a video of it on my phone so I could watch it later :) As we were wrapping up, I was asking the radiologist what his impression was, and he said he'd never seen a case of it himself (in the 30 years he's been practicing medicine), but he's seen it in books and reports: granulomatous mastitis.
The biopsy confirmed his suspicion, and my breast specialist essentially told me to go home, take ibuprofen for pain, and it'll go away on its own. As a future member of the medical community, I was saddened. I am not a wuss- I can handle a pretty great amount of pain. I can and will push past it and my life will keep going.. but that was all the advice/knowledge they wanted to throw at me?!
Needless to say, I set out to find some answers, and I found you all. Because of you, I found Dr. Laya who I went to see a couple of times in June.

So here's where I need support/a slap in the head:
I hate medicine. I really do. Every time I take medication, I get those bad side effects that are supposed to be "really rare." This is TMI, but every single time I take antibiotics, I get a yeast infection, have pretty gnarly GI issues, and can barely function from the fatigue/exhaustion. Every time I take pain relievers (vicodin, percocet, etc.) I don't poop for (what feels like) an eternity. I can't even take birth control pills or use any hormonal birth control because they throw my whole mind and body completely out of whack. I can't even begin to imagine what kind of nightmare I'd be living in if I tried steroids.

After the first round of antibiotics in March, I haven't taken anything. Dr Laya recommended 4 months of antibiotics, but there is just no possible way that I can do that while keeping my life on track (school, work, taking care of my daughter). I went to see a different breast specialist and even after telling her the whole story and how resistant I am to taking medication, she just wrote me a script for Augmentin and sent me on my way.. I haven't taken them and don't plan to.

Counting the initial lump in March, I've had 4 pretty big abscesses that have all burst on their own. Before they burst, they look like blisters (ranging in size from the first one - 1x1in., to my current abscess - 1.5x2in.). After they burst, they heal really well, and in a normal amount of time.

I guess my question is this:
Is it just really, really dumb for me to not take any meds?
And for those of you who have knowledge of (or have gone down) the surgery route: who performed your surgery? Did you get a referral from a breast specialist, or did you find someone on your own?

Surgery is just about the only option I feel like I have left. I'll be down for the count for a while, but at least I'll still be able to live my life..
I'm sorry to have just word-vomited everything this way. I've been wanting to write for a while, but haven't felt desperate enough until tonight. I'm on the verge of an abscess burst and I just want to cry. I'm sorry you all have to go through it too, but I do find comfort in the fact that I'm not alone.
Related Discussions
10 Comments
Blank
1102211_tn?1296985558
You aren't alone honey - not many of us but you have our support if you need it. X
Blank
Avatar_f_tn
Thanks Sky. I appreciate it :)
Blank
1548207_tn?1303457780
I think if u are comfortable without the meds then do it I know there were a couple of women here that do a more holistic way with an anti inflammatory diet and vitamins and the clay and it works well for them. I try to eat healthy and do vitamins but I chose meds and compared to the severity of my GM symptoms the side effects were and are manageable I did a steroid methotrexate combo and now just methotrexate.  Its your call though. I'm a single mom of a 4 year old too and its tough and overwhelming at times so I'm here if u ever need to talk just message me. *Nicole
Blank
1515564_tn?1309322463
Hi Noelleanalise,

I just wanted to tell you that you are NOT alone!!!!!! You can read more about my story in other posts here (old posts, because I haven't posted for a while). But for now, what I want to share with you is that I feel the same way about the medications. After I went through 7 rounds of antibiotics initially, which made me feel more horrible than ever, I opted to not take any more medications at all. I refused any further biopsies, refused surgery, and decided that the best thing for me was just to try to get healthier overall, and wait it out. There has been at least 1 small study (and maybe others) that have shown that granulomatous mastitis often goes away on its own if left untreated. The study I know about gave an average of 14.5 months. So I decided to wait and see what happened.

So, in the mean time...I have done a lot of things to manage my GM. I had success with the clay when I had abscesses. I also had a lot of success with moderate exercise and stress reduction techniques - even just taking time for deep breathing, etc. (I am sure stress reduction is not an easy thing when you are a single mom to a 4-year-old, and are in school, but it is worth it if you can find the time).

Also, the thing that has been the biggest help to me recently is that I started a new diet. It is called the Paleo diet. Basically, what you eat is only lean meat, veggies, fruit, some nuts, and some eggs. BUT, the awesome thing is that you eat as much as you want of those foods. I lost 20 pounds in the first month of the diet, which was awesome, but I didn't do it for the weight loss...I did it because I have been ill for so long, and I was hoping that this drastic change to my diet would help...and it has. One of the main ideas behind the Paleo diet is that grains (gluten), corn, dairy (casein), and even beans and legumes are responsible for autoimmune disease, inflammation etc. In this diet, you don't eat any of those things. In case you were wondering, I am not the kind of person who has ever succeeded at a diet in my life. I love junk food. I just felt like I needed to give this a shot to see if it could help. The outcome is that my GM has imrpoved in a huge way, my acne has gone away, I have lost a total of 25 pounds now, and I feel so much better. My husband has done it with me, and he has lost about the same amount of weight, and was able to get off of his blood pressure medication. Anyway, it is definitely worth looking into, for sure. If you have questions about it or are interested, I'd be glad to help.

All of this (the GM) started 21 months ago for me (wow - I didn't realize it had been that long until I added it up to type here!). The first 10 months were absolutely HORRIBLE. I was so sick. I had abscesses, I had hard lumps, I had so much pain, and I was so so so sick. My last abscess burst open in January of this year. And then, slowly, over the course of this year, as I have worked on doing more and more healthy things for myself, I have been slowly healing. I still don't feel 100%. I don't know if I ever will. There is something that is not right with my body, my health, my immune system...something. But I am doing so much better now than I was a year ago.

So...the thing that I have said often on this forum is that in my opinion, doing "nothing" is a really great option. I had to have breast surgery for a different problem, and I would never want to have breast surgery again. Other women feel differently, but that is what my experience was. And I agree with you about the medications...so many side effects. My thought process was that in order to decide to take medications, I needed to weigh the potential side effects against how bad my GM was, in order to decide if the possible benefits out-weighed the risks...and for me, the answer was no. A lot of the medications that are prescribed for IGM have some very frightening side effects...and for me it wasn't worth it.

Anyway, whatever choice you make, just make sure that you are comfortable with it, that you are confident about it, and that you don't let anyone, even your doctor, talk you into doing something you don't want to do. It sounds like you have been strong so far : )

If there is anything I can do, I'd be glad to help.

Jennifer
Blank
1822062_tn?1317283366
Hi dear,

First of all let me say, thank you, for saying the things that has been playing like a broken record in my head. I hate meds too, and people around me keep scolding me for it.

Before my bout with GM i have had hyperthyroid (Grave's Disease) for more than 4years. I had to take so many tablets, and because of my dislike for meds I've been on and off medications for the entire 4years plus. Whenever I was pregnant I would take my meds religiously because I didnt want to jeopardise my kids' health (although there are also possible side effects of the drugs themselves). But when i feel like its been too long and no changes I would stop by myself.

As with GM I have been on steroid for about 4months,and I hate the side effects. My face,my belly and my feet swell up like nobody's business. I have trouble sleeping, and my thyroid prob juz got worse, I have tremors and irregular heartbeats.And its not doing anythg to the lump at all. Except that it doesnt hurt. But the routine Im on now means I have to be on steroid for 3 weeks then stop for a week. Whenever I stop, in fact whenever i was a couple hours late for the drug, the lump starts to hurt. Its like im already dependent on it. and I hate it.

Just yesterday at my appointment I was so ready to hear the doctor say "Alright this is not working, let's try something else" but to my disappointment they actually increased my dosage and want to give it yet another month.

But now I want to keep reading your thread and really consider if it is best to do nothing at all. Thanks again to u, and everyone here for giving me options. Wish you the best!
Blank
Avatar_f_tn
Can you tell us more about the Paleo Diet.  Were there any online resources that you found particularly helpful in following this diet?
Thanks for sharing.
Blank
1515564_tn?1309322463
I would be glad to share some info about the Paleo Diet with all of you! I normally wouldn't recommend a diet, but this one has helped me so much that I think it is worth it for anyone who is willing to give it a shot.

I think the best information that is available about this diet is from a man named Loren Cordain. His "version" of Paleo seems to be a little healthier than some of the other versions. There are few different versions of this diet, which can be a little confusing in the beginning; most are very similar, but with a few tweaks, like some allow a little dairy (most do not), some allow a little more fatty meat, etc. But Loren Cordain follows the healthiest set of guidelines. (In my opinion).

His website is http://thepaleodiet.com/
The FAQ section of this website is helpful, but his books have a lot better information that his website.
His books are excellent. The primary one is just called The Paleo Diet, and he also has a cookbook that is very good. If you can afford them, it is worth the money (or you could try to find them at the library).

There are a couple of other websites that would be good to check out:

http://www.marksdailyapple.com
http://robbwolf.com/

There is more info on both of these sites than on Dr. Cordain's site.

And the best site I have found for recipes is:

http://everydaypaleo.com/

Most of these websites talk about healing autoimmune disease by adopting a Paleo lifestyle. I realize that we don't know exactly what causes IGM, but there are thoughts that it is/could be autoimmune in nature.

While I wouldn't say that I am "healed," (and don't know if I ever will be) since I still don't feel completely healthy, I am very confident that this diet has helped me immensely.

My best advice about trying this diet:

1. In the beginning, if you have been eating a lot of sugar, carbs, gluten, etc., this will be a challenge. The first week was the hardest. I had horrible cravings, and it was a shock to do something so different from what I was used to. It gets better if you can stick it out, though!

2. Focus on what you CAN eat - which is lots of amazing, healthy, nutrient-rich food - instead of what you cannot eat. You can eat as much as you want on this diet, as long as you eat the right stuff.

3. Some of the Paleo "experts" recommend eating strict Paleo for 30 days in the beginning. Some of them do not. Those who do recommend it say that this is especially important in fighting autoimmune disease, that it serves as a detox from all the stuff you were eating before, and that it lays the foundation for your diet. I did the 30 days of "perfect" eating (following a few false starts : ) ) I think that if you can do it, it's worth going for the 30 days. You will get the best results that way, plus once you have all of the bad stuff out of your system, it will be easier to see if that was part of what was making you sick.

I wish you luck if you decide to try this. If you have any questions I will try to help. It would be fun to share recipes too. : )

Jennifer
Blank
Avatar_f_tn
Hi hon,

I just finished reading your post and I can say I feel you on the pain. I would try and take the meds, they do help with your journey. I had surgery in July (to remove a abscess). When I was diagnosed with GM, I was on Active Duty. the Army docs gave me a bunch antibiotics (including Augmentin), but also gave me some other meds to help combat the side effects. Flucanzole(didn't spell that right, but its to help w/yeast infection) you can also eat a lot of yorgut; the active cultures help combat yeast infection (regulate your system).
Blank
Avatar_f_tn
Thanks for answering my questions.  
I am doing my research and getting ready to do this.  **deep breath**.  
It is a bit of a daunting diet but i can see the value in detoxing.  I can also see the relationship between food and autoimmune disease so I will be going into this with a positive belief that i will find some relief.  (My mother the hippie always said that medicine and lifestyle choices for health were mostly in our heads anyways)
I am going to check out your resources and think I will try the 30 full start.
Question re dairy....I take calcium to help combat one of the numerous negative side effects of prednisone.  What;s your opinion.  would this interfere?  It is not dairy but actually just the nutrient straight up.  thoughts?  
Blank
1515564_tn?1309322463
I think that taking calcium would be fine. I have taken a multi-vitamin and also a fish oil supplement (supposed to help with inflammation) the entire time. Also, part of the idea with this diet is that your body will be able to absorb nutrients from your food better - so that will be an added bonus. I hope it works really well for you. Please let me know how you are doing.
Blank
Recent Activity
Avatar_f_tn
Blank
JustineIGM commented on Granulomatous Mastiti...
Dec 12
Avatar_f_tn
Blank
ayiyi joined this group
Welcome them!
Dec 08
Avatar_f_tn
Blank
Annaamiri joined this group
Welcome them!
Dec 04
MedHelp Health Answers