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granulomatous mastitis User Group
Save the Tatas
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
254 members
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Save the Tatas

Ok ladies, if you read my last post, you'll understand why I am an emotional mess.  I won't even pretend that I'm being rational; I know I'm not.  

You're the only ones that know how much this is killing me.

And this morning, I was driving to work, and I saw a bumper sticker that said "Save the Tatas."  I damn near went bananas.

Yes, I am thankful I don't have breast cancer. Yes, thank God I won't die from GM.  But my experiences with GM were nothing short of hell on earth.  There was not one moment of those years that was good or fun.  And now, here I am, at 30 years of age, preparing for a double mastectomy in two weeks.  Dealing with those emotions and fears.  

What about my tatas?  Are they not worth saving?  Are our experiences with GM not worth hearing because it's not cancer?  All I got when I was sick was "Thank God it's not cancer!"  Yeah, thank God. But now, as I move toward the most difficult thing I've had to face in this whole ordeal, not having cancer does NOT make it  any easier.  

I know this is so irrational and crybaby-ish.  But I just had to get it out. And maybe you ladies understand what I mean.  Maybe you don't.  I don't know. I'm just a mess right now....
7 Comments
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1548207_tn?1303457780
I completely understand your feelings of what about our Tatas. I hear all the time about at least its not cancer and thank God its not but it doesn't mean our experience is any less traumatic. I told a friend of mine that yes I'm glad its not but honestly at least with cancer there are definitive treatments and insurance helps more. I maxed out my insurance in january for the year and am all out of pocket til November but if it was cancer I could get help like Medicaid to offset it but instead I am drowning in climbing medical debt. As a single mom that works full time I now debate Going to the doc for fear of the bill from another draining or test. You are not alone in this
I have only dealt with  this for about 7 months and can't imagine dealing with another 2 years of this. I just had an abscess cut open to drain Wed. Which is painful and means no swimming til it heals. My 3 year old can't figure out why mommy's booboo doesn't heal and it's frustrating to have to hug carefully or only snuggle on one side so he doesn't hurt me. I try to be positive but we all have those days so never feel alone! I pray this mastectomy works for you and you have no further issues with GM. Try to keep your head and hope its the end of this chapter in your life. Sending ((((hugs ))))
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Avatar_f_tn
I think you are perfectly rational right now and the feelings and thoughts you are expressing seem perfectly valid to me.  Same thoughts I have had, do have.  And given everything it would be unusual if your weren't emotional right now.  Try to be kinder to yourself please...it is others with the ignorance that need to change, not you.

Breast cancer can range from a simple noninvasive lump that is excised and does not require radiation or chemo to heal, to much more involved cases.

Frankly GM often presents or progresses like late state untreated breast cancer.  NOT NICE.  And it causes other distressing symptoms systemically.  Most cancer patients have excisions or mastecomies so that their tissue does not ever behave like GM.  The doctors and patients with GM know how serious this is and frankly, when I first had GM (also in 2007) (and yes, a long, painful, terrifying road it has been), and was consumed by pain, and overwhelming fear, I don't think anyone other than my doctors understood.

Learning to be okay with the ignorance of others I encounter in my life as I deal with this disease, is a big part of the process for me.  I HATE THE BREAST CANCER COMMENT - HATE IT - these are both awful diseases.  AWFUL.   PAIN/EXPERIENCES SHOULD NOT BE COMPARED. Period.  

This disease is hellish.  I think of what some of the women on this forum have endured and it makes me angry.

My life has been completely turned around.  Nothing is the same, and neither am I.  I now spend my time dealing with legal and insurance issues, having gone from a successful professional for 25 years to a disability pension.  My work let me go the same week I was having a spinal biopsy which I had informed them of.  After I had struggled for three years to maintain my job and income, and keep working throughout the intense pain - I often walked the halls bent over due to my spinal and breast inflammation...but according to them 'they didn't know I was sick'.  

Personally, I don't expect understanding from anyone outside of this forum.  It is enough that you know, and we know, who you are and what you have gone through Noelle. We can be your witnesses - everybody needs a witness I think.

I recently went to a breast cancer event where you learn to tell your story to others...and although I felt some shared experience, I also felt the odd woman out as I told my story to the women.  We don't fit anywhere.  So that is fine, we know have our forum and we will build it and the knowledge required to properly fight this crap disease.

Don't let the %$&^%&^%!! get you down.

I am hoping and praying that you are on the road to healing for good.

Jo






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Avatar_f_tn
Hello! I totally agree with what you are saying. I have only dealing with this mess since early this year. This is a frightening thing. All I can say is thank God this isn't cancer! On the other hand this is an unpleasant experience. I am just so tired of being sick, tired of being tired.

I feel like other people just don't grasp the severity of this situation and look at me like I am just being a cry baby. This has been difficult to deal with. I have missed so much time from work because I have been sick. Also from having doctor appointments.

This really got to me when I couldn't get up to feed my daughter. I felt so sick that I couldn't get up. The next thing I know she is sleeping next to me and then I remembered she was hungry. I feel horrible about that night, fortunately there was a bag of cookies on the table, which is what she ended up having for dinner.

I totally get what you mean and I don't blame you for feeling the way you do. I hope you get better!
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1627204_tn?1302016137
Thinking of you and praying for you this week. I know this is a really hard step. But I have hopes that you will experience relief and healing as well. It has been a long time in coming. It is hard to go in such an "un-known" direction. However, the "known" has been impossible. You are a I brave woman. I hope I can be as brave once I have seen my treatment thru.
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Avatar_f_tn
My god everything I've just read from all of you I've been shouting in my head since aug' 10- when my pain got ungodly and didn't let go- it stopped being here or there and became chronic debilitating pain that noone understood. Noone_ - the reasons why I cried when it got bad, or grabbed my breast in public bc I thought I was going to explode, or had pain attacks that brought me to my knees.....I got scared to drive in case I had a pain attack bc it left me weak and shaking....couldn't do anything related to too much movement or jiggle of my breast bc I couldn't stand to feel it- and all I got was thank god its not cancer- well I hate to cuss but that **** is for the birds! Lemme tell you- most cancers go undetected bc there is no pain involved, and cancer patients can't relate unless they had a mastectomy. The ignorance and lack of knowledge on something that hurts so d*mn bad is criminal. I cried myself to sleep for months on heating pads and taking any pill I could get my hands on. Thank god I managed to not get addicted from anything I took. And all I could get were sympathetic looks and thank god its not cancer?! Well u know- I'd almost have rather had cancer bc it would have spared some of the anguish of the last 2 yrs- and maybe I would still have my dd's or pierced nipples .......For the first time since this started I finally have found a group that truly understands.
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Avatar_f_tn
Yes, we do understand here.

Unfortunately.

The fact that women are being treated the way we are, for the most part, by the medical system is not acceptable.

People are not being treated properly for the pain, nevermind the horrific physical symptoms and mental anguish.  As you say, inflammatory breast cancer is one of the few breast cancers that hurt (and so often presents as GM), and is one of the deadliest.  Most cancers are not painful at all - a good way I was always told to distinguish a cyst from a more troublesome lump - did it hurt?

Being treated like someone with with a low pain threshold, or the type of person who somehow wants to inflate the experience they are going through for attention or gain is just so INSULTING, when actually you are going through one of the most frustrating, traumatic diagnosis paths anyone can - you have this disease, but we don't know what it is really, or how to treat it really, and it may devastate your breasts and cause other systemic disease which will then be dismissed because they don't understand the process.  Your pain will be incredibly high at times, but we won't treat it properly because we can't substantiate it....

the anger is justified however it does not lead to healing or understanding so I have tried to lose mine...an ongoing battle

Jo

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Avatar_f_tn
On all you said- my thoughts exactly. I have an extremely high pain tolerance and when it brought me to my knees, its like nothing I'd ever felt. I can't tell u how many times I got turned away from medical facilities bc they didn't want to treat it or I couldn't cover it financially and they wouldn't treat me, hospitals included.
Not knowing anyone else that has had this or suffered thru this, there for a long point it drove me crazy bc everyone thought I was crazy or melodramatic. It made me retort to some people or a cpl men -' imagine if one of your balls got hard and swollen and there was nothing they could give you for any of it to help/ treat/ or pain manage? And when it flares up it feels like stabbing knives and burning pokers and the feel of fabric rubbing against makes you want to scream? What would u do then?'.................. Well you know- I've done good, I'm over the anger I spent that out already.....I have rage left at ineptness, and slight resentment sometimes. But really the only thing that makes me angry at this point- and this is truth now " is thank god u didn't have cancer".
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