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granulomatous mastitis User Group
26 years old, reoccuring mastitis
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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26 years old, reoccuring mastitis

Hi All,

I am starting to research mastitiss more now...I am 26 years old, have never had a child, not a smoker, no history of cancer and I am just getting over my 5th mastitis since June 2010.  This infection is completely debilitating (as you all know) and I need answers. All the doctors I go to continue to simply treat the infection when it occurs and they are not helping figure out why this continues to happen to me. I have had lumps found in my breast that specialists believe are dense tissue. I've had two ultrasounds done (one just to see the "lumps" and one when my mastitis was in full form this weekend) as well as two biopsies. I should know more about the biopy results this week but am reaching out to the MedHelp community for some suggestions as well.  I think the mastitis have something to do with my hormones and menstrual cycle... Had my first infection the first month I received the Depoprovera shot (birth control) June 2010, my second infection that July 2010,  the third that following January. I went off the shot this past July 2012 thinking that it may be responsible for the mastitiss and got my fourth mastitis in Sepember of 2012.  I went on new birth control in October 2012 and just got my 5th mastitis this past Friday, January 11, 2013.  All of my mastitis happen during the first week of the month- typically around the time I was supposed to get my period. You do not get your period on the depo shot so it was hard to tell if that was really "my time of month".  

Has anyone experienced anything similar?
Has anyone gone to any other sort of specialist other than breast surgeons/women's health?

I beg of you, I need help! I know you all know how awful these infections are...completly debilitating.  

I am in the Boston area if anyone can recommend a doctor or facility.

Thanks!
Anna
5 Comments
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This all new to me as well. I'm just starting to research this myself, but from what I've read on here and from my experience, is that GM can officially be diagnosed by the biopsy but the Dr needs to be testing for it. I too had a biopsy but it was small and they were looking for inflammatory breast cancer. I am scheduled for a "deeper" biopsy to officially test for GM or a tumor. I'm also pregnant which complicates things. My Dr informed me that treatment would be steroids  but after the pregnancy. I've read on here that some women are seeing rheumatologists,  because I think these infections could be an autoimmune system disease. However, many women on here also have other medical conditions not sure if that is why they are seeing those specialists.
The specialist I have read about is Dr. Mary Laya out of the university of Seattle in Washington.    I READ that she is handling 12 cases.  

Since I can't take any medication, I've changed my diet and started juicing
lots of veggies and some fruit, eat little to no meat and dairy, grains, and water.
I'm starting to heal, but pus is still coming out of a drain they put into my breast. When I drink my juices I get a burning and itching on my breast and like to think it's fighting the infections. I also went to an acupuncturist and was given some Chinese herbs.
How long did each infection last? I'm curious cause this is my first. Good luck to you!!






  


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Hi There,

My first biopsy in July of 2010 they were looking for inflammatory breast cancer and found nothing. They found lumps in both my breasts in June of 2012 so I had an ultrasound done, again, to look for cancerous masses and they think it is just dense breast tissue. I had my second biopsy and ultrasound done last Friday when my 5th mastitis flarred.  This was a plan that I had set up with my doctor so we could see if the infection was stemming from the lumps that were found. I went in for the biopsy about 3 hours into my infection and it ends up that the doctor did not get any of the infection out- pathology didnt find anything. She didnt know if she got any out or not since the infection was so new at that point. In the future, I am going to wait until day 2 for the biopsy to assure that it is "infected enough" to get some fluid out. IUghh.

My infections last 4-6 days each time but I feel them coming on within minutes. I literally will be up and going, feeling great, and in a snap I start to feel physically sick. Fevers, breast pain, etc.  I am immobile for the first 3 days and need someone to help me function. I get awful leg pains and my sister ends up massaging my legs nearly all night so i can sleep.  I get high fevers, I get semi-delusional and start seeing things... its bad.  I am not pregnant and never have been which makes my situation weird. Many pregnant woment get mastitis but not women like me.

I will look into the rheumatologist- thank you for that suggestion. Ive thought about acupunture- did that help at all?

My breast surgeon recently referred me to an Infection Disease Specialist here in Boston and I have that appointment next week.  Ive also switched breast surgeons and will now be going to see a woman at Bringham and Women's in Boston next week as well.  I will ask both doctors about the testing for GM... is it just a regular biopsy with different pathology tests? From what i've read I am not sure if I have GM because with the right medication, my infection goes away in about a week. Sounds like women with GM are never able to get rid of the mastitis AT ALL, is that correct?

I hope you heal fast- I know how uncomfortable mastitis are...and without medication, I cant even imagine!

Anna
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Hi, I only have a second to right but there is a doctor at the Avon Breast Health Center at Mass General who has treated patients with IGM, if you call the center and ask who the doctor is they will know.  Hope this helps and good luck to you.
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Hi, I only have a second to right but there is a doctor at the Avon Breast Health Center at Mass General who has treated patients with IGM, if you call the center and ask who the doctor is they will know.  Hope this helps and good luck to you.
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hello there, if u have tried every thing go for natural way i did that too like ayurvedic medicine do u have ever heard abt it ? if know thene lemme know good look
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