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granulomatous mastitis User Group
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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
255 members
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pictures

Is there a way to upload pictures here? or is there a site where I can see what kind of damage GM does?
5 Comments
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Avatar_f_tn
Hi Pepsi -

if you search the Internet you will find some fairly graphic examples of the extensive changes GM can cause to a breast, and the surrounding tissues.

I personally would rather not have a graphic representation on this site as this support group's membership is varied, certainly not everyone here will have the same outcome, and many could find the pictures disheartening and upsetting, especially depending on their knowledge and diagnosis status.

The goal of this support group is also to provide comfort and encouragement to women who are facing a pretty terrifying road as it is - a serious disease, extremely rare, with no known cause or accepted treatment protocol, with extreme symptoms, often extensive breast changes (however this can be reversed as the breast heals), and bilateral mastectomy as a regular outcome.  Pictures can be had elsewhere.  I don't see their role here.

And frankly, I personally found and do find the pictures extremely upsetting, and was much more comfortable with my own breast and observing the changes first hand, with medical support and guidance.

I would very much not like a picture gallery to be created here.

That said, it is a democracy and if any members would like to message photos, etc.,, on a private basis...particularly if they have pictures showing encouraging before and afters that would be great.

Jo
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Avatar_f_tn
I just thought I would ask since I didn't feel better about my own wounds until I saw a picture of another woman's wound. I felt less alone and it gave me comfort in knowing that how mine was looking was normal for GM.
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Avatar_f_tn
I apologize pepsi, I reread my post and think it came off as much harsher than I intended.

I also think I may have personalized too much - this is everyone's forum and we all have different needs.

When I first had the diagnosis, in 2007, there was nothing out there but some really scholarly articles, most very dated, some articles leaning toward this being an infectious disease of women of lower socio-economic status, and more prevalent in the third world.  And then there were some really horrendous photos and I was TRAUMATIZED by the whole experience.

But you had a completely different experience and found comfort...

So, again sorry for probably being overbearing in my response.

Jo
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Hi pepsi75,

I totally understand your curiosity.  I kinda felt the same way.  I wanted to see how other womens breasts were and how they were dealing with it too.  Mine seem like they are getting so ugly and I wondered if other women were experiencing it too.  I wanted to make sure I was "normal" in all of this.

There was one women on here who posted a few pictures and I have decided to start taking my own pictures just to chronicle my own journey.  I haven't shared them with anyone yet, but figure some day there will be the right time and place.  

Just know that you are not alone in wanted to see what other women's breasts are looking like.  Mine have scars from where draining holes have healed and dark bruising like scars.  They have a few concave areas and some hard areas and one of them now invovles my areola which is lovely.

Hang in there.
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Avatar_f_tn
I, like fibro have been taking pictures (pretty daily) of my GM ongoings... partially for my own sake, partially for my doctors. I think it helps (personally) to have pictures; especially showing before and after flare ups and sharing them with your doctor. My doctor and I review ALL the pictures I have taken since my last appointment at every appointment. She also, of course, has her own pictures that are taken at my visits.

As for wanting to see other pictures... I agree with Jo... I think maybe making some password protected album somewhere and linking it to the forum might be a good idea (??) that way, everyone knows where it is and can glimpse if interested...
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