I would like to hear from other members who have been diagnosed with idiopathic granulomatous mastitis or granulomatous mastitis.
I have been battling this disease since 2007. I would like to join or start a support group. Due to the rarity of this disease I have found it to be very isolating and I think it would be therapeutic to have a group where we can share and discuss challenges and successes. I am also hopeful that perhaps by sharing our backgrounds we might find some common threads - I do not believe anyone is currently researching this disease, I am frustrated by the lack of knowledge in the breast specialist and rheumatologist world about this disease.
Please message me if you have this disease and would like to join a support group.
Hi, I’m 29yrs old I have been diagnosed with Granulomatous Mastitis September 9, 2009. I’ve had 3 surgeries with in 6mths. It seems like I am in the hospital every 3mths. I have 2 agree that the lack of knowledge of this rare condition is very frustrating. I feel like a lab rat.
I have a new doctor now, who I hope can help find some kind of cure. It is very hard 2 stay positive when this is so painful. Thanks for hearing me out.
Hi. I am 39 year's old and I too was diagnosed with Granulomatous Mastitis in January of '2010. I have had many needle asperations and eventually ended up having to have surgery done in December of '2009. This is when they diagnosed me with having this disease. I am awaiting to see another doctor for a second opinioin. I just can't believe that there so little research on this disease. I am currently starting to suffer with tenderness again in my right breast after only healing completely in March from the surgery I had on both my breasts in December. There has to be help out there somewhere. I too would looove to see a support group for us women who suffer with this disease. I agree, it is very hard to stay positive when you are in sooo much agony.
My problem started in December 2010 after my 4 year old daughter accidentally hit me on my R breast with her elbow. She is a very petite four year old and didn't meant to cause me any harm. Prior to this incident, I fully breast fed my child for three years!! Yes three!! And ever since, my breasts have been very tender. If I would exercise and lift 5 pounds weighs the R breast will get extra tender for a good 2-3 days after. At the age of 28 and after my daughter accidentally hit me on the R breast about three days later I developed a big lump on my R breast. I was very scared. Made an appointment with my Dr. Didn't give me anything but he referred me ti a specialist, the specialist preformed an ultrasound and he gave me amoxicilin for 10 days. After the ten days the lump on my R breast was still the same. And was starting to hurt. In February 2011 and after a couple of ultrasounds I had a biopsy in two parts of my R breast. My breast was purple and redish after the biopsy which I understand it's normal. Thought the biopsy was going to give the answr to my problem but the Dr. Said that the biopsy didn't really tell him much that it just showed "a bunch of swoallen cells" then he requested a mammogram that he did not want to do at the beginning due to my age. In march 2011 I couldn't take the pain anymore it was a Friday night and I had had pain on my R breast all day at work. I went to the ER room they did a couple or a lot of test on me. They tested me for immflamatory breast cancer, I got xrays done, blood test, ultra sounds among other things and everything came out negative. My R breast was still red, hurting and visibly deformed. That saturday morning on march 2011 after another ultra sound an a different surgeon whom I'm so greatful with (though not at that time) did two cuts on my R breast to drained two abbeses. After a month of draining my R breast the same Dr. Who cut my breast decided to send me to Stanford because I still had a lump in my R breast. I was luckily send to Stanford clinics in Palo Alto, Ca. There I went from clinic to clinic had MRI, biopsy where they cut a side if my R breast, ultrasound and mammogram. Found out that it is granulonous mastitis and I'm now taking MTHX with folic acid. After reading your stories here and searching for clues as to why this happened to me one thing that my current Dr. Made clear is that the trauma I had in my r breast in Dec 2010 and me breastfeeding had nothing to do with me getting this disease. I feel a lot better then I use to be mentally and physically, I lost my job, I really hope that the worst its over so I can continue with my life and have at least another 2 children. Wish there was more information on this disease so that others like us can coupe a lot better. Because the lack of information and going through this dilemma it's very scary. If you have any questions or would Luke to k ow the name or number of my current Dr. I'm here to listen or post back to your comments. Thank you and I hope you all get better soon !!!!
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