granulomatous mastitis Community
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1663162 tn?1302923616

I must have IGM!!

God led me to this website!
I have exactly the same symptoms as most people with IGM disease. My son is now 2 years old. I breastfed him for 4 months. During my pregnancy, I developed a lump in my left breast and had biopsy. The wound never healed and had constant leakage of thick milkish fluid coming out. I carried this large leaking wound until I had my baby and stopped nursing after 4 months. Things did not improve! Second day having the baby, I had a fever and my right breast developed mastitis. The lump was so engorged and painful that it soon bursted open on it's on and became a large ulcer. Before it bursted open, I did see a breast surgeon to have it aspirated for releasing of engorged pain. However, the inflammation would return fast in a week. I had many many visits just to have the aspiration done. Than, I guess too Many needle insertions triggered it to burst open on it's own.  Still, my lactationist encouraged me to continue breastfeeding. It was too painful with wounds on my both side. (large ulcer and biopsy insertion in the R )
So, I only managed to breastfeed 4 months. After I wean off, My wounds slowly healed.

My son is know 2 years old
3 weeks Ago, I felt a grape size Lump in my leafy breast. It wasn't painful. I quickly ignored. But it grew quickly and suggested feelings of engorgement. Next week, I had family visiting me from out of the country. I met my 5 months old nephew. I thought my engorgement may be caused by the baby staying with us.  But, when they left, the pain didn't go way. It grew so big that I had a almost bursting abscess around my nipple.  My husband who is a family doctor, used a needle to pierce open. I squeezed out about 4 ounces of thick yellow greenish milky fluid. Still, I can not manage to get all. I still ace pain and inflammation in the other ares of my left breast.....

So painful and hopeless, I asked my older son (4 yes) to join me in prayer. I prayed that his dad can find the cure for me. Well, after the prayer, I couldn't sleep and began to do more searching on my iPad.....and I found  Granulomatous mastitis, this term.   I began reading into this....lots of medical reports on site.....mAtched my store.....

Here I am to greet you all and just letting you to know that I'm in pain too......

3 weeks ago, I felt a grape size lump in my left breast.  
6 Responses
1627204 tn?1302012537
Welcome to the forum. It is a wonderful place to be informed. What you describe does indeed sound like IGM. However, it is also very dangerous to play Lone Ranger. I would suggest you go in and have a Breast Specialist, have her take some of the fluid from your abcess and test it to confirm the diagnosis. Beyond that, take all the information you can, and you can take charge of your own care. Drugs or no drugs, new diets, mastectomy or not...  these are all decisions you get to make. The one thing you don't want to do is to assume it is IGM, and find out later it is cancer. Also, one of our other members recently posted that when she had her mastectomy, they found four different types of pre-cancerous cells in her removed tissue. So having IGM does not mean that cancer does not develope along side of it. Find a Doctor that is willing to work with you on a treatment plan you can both be happy with. The rest of us will be here to hear your issues, compare notes, and encourage you on this journey.
Avatar universal
Hi Tiffany,

Really sorry to hear that you are having such pain and distress.

You really do need to see a breast specialist and have them test you for GM.  It sounds like you had it, you healed and it had now recurred, which can happen.  Unfortunately, as you probably know at this point, there is a real lack of knowledge in the medical community about this disease, and treatment challenges.

We all have had the abcesses and so you are not alone...yes it is awful. I think the draining is very important in managing this disease.  Please let us know that you are seeing a breast specialist or surgeon and what they have to say.  I think it is important that you get a definitive diagnosis and some proper treatment for your pain and antibiotic to ensure you do not get a secondary infection from the draining you have just done.

Best wishes, Jo
1663162 tn?1302923616
Dear Jo and Pandora,
Just this second as I'm reading both of your replies, big tear drops kept rolling down...thank you for being here for me.  I was so distressed with this rare disease that I haven't been myself for the last few weeks.  And, thinking back the other times with abscess and hard lumps in 2009 was just terrifying.
I have 2 young boys, 2 and 4.  But, I can't even get too close to them...afraid they may bump into my painful breast.....I feel so distanced from everyone....this disease makes me so physically unloving......no more cuddly hugs or sweet embrassing at story times....

Yes, I will have an ultrasound on Monday and visit my breast surgeon on wedesday?

Btw, what type of tests did you take to confirm it's IGM?

Again, thank you...and big hugs to you both through cyber space.....
Avatar universal
Hi Tiffany:

You are not alone in any of your feelings.  This disease is very terrifying to be diagnosed with...and then what...you find out no one really knows anything and so what the &^E$**** is in your breast?  And of course the symptoms are devastating and present with the same symptoms as non-treated end-stage breast cancer in many.  You have a right to grieve.  But there is also hope, and as cliche as it sounds, could be worse.

There is something ugly about this disease, and I believe it is the 'draining' - ok highly unsexy from what we as women treat as a symbol of feminity and fertility, devastating to have your breast turned in to this inflamed, holy mess....but for most it goes away.  I understand your feelings I think though.  I would not hold my friends babies because I felt somehow tainted and I stopped dating...really a blow to me as a woman.

But this is the stuff we all have to deal with, no way out, also the stuff women with breast cancer go through.  And losing a breast...things come in to focus fairly clearly for most I think.

GM can be identified under biopsy.  The pathologist knows what to look for.  Although it is a 'disease of exclusion', there are certain granuloma and other cell patterns that indicate GM.  Generally this is done through extracting tissue with a core biopsy.  I have had a few, pretty routine, however can be very painful due to having extreme inflammation in the breast already with GM,

My advice is to take a breath, make sure you are seeing good doctors, and it sounds like you are, and just take it from there.  Stress doesn't help much and I don't think it helps this disease.

There is life after GM - good quality, you just need to get through.

Processing that you have this bizarre condition is the toughest I think, and things get easier from there.

Take care, Jo
1548207 tn?1303454180
Oh I hurt for you because I understand how you feel about your kids. My son is 3 and I too have begun to feel distant due to the lack of affection caused by my GM because a big hug can hurt these days. I know with cuddling I have him sit or snuggled on my other side but with2 kids that's more difficult I am sure. Just stay strong and try to find other ways to show affection like kisses and maybe a special simple handshake (we do hi 5. Lo 5 pound). Say how much u love them. This group is so helpful and supportive. Keep your head up I know its easier said than done but kid's are a great inspiration to be strong. Sending ((((hugs))))
1663162 tn?1302923616
Thank you Red!
Yes, I began telling my boys how much I love them. My 4 years old understands.  But, my 2 years old still insist I hold and hug him...so I still do despite the pain.  
This is terrible disease. I feel so bothered both emotional and physical. Now, I'm in the process of waiting for the open insertion to drain all the yucky stuff out and hope for the inflammation to go down. My doc is estimating for a week of time in rinsing with salin and packing with strip gauze. Not fun! Very painful!
Anyway, I feel my inflammation may  have caused by my nephew who was only 5 months old baby staying with us 10 days.  It is possible that this baby triggered my prolactin level and caused me to have a mastitis.....but it's all guessing.... Still, I think I'm not that fond of babies anymore, every time I hear baby crying, i would want to runaway!

Nice meeting you here.  Thank younger your warm welcome and hug!
Hugs, tiffany    
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