563?1263745088
granulomatous mastitis User Group
Inverted nipple with IGM? Clinical trials?
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
229 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Inverted nipple with IGM? Clinical trials?

Did anyone discover their disease due to an inverted nipple? I noticed that my nipple was inverted in August 2008. I had my first surgery when I was living in Spain in June 2009 and later in February 2010. I had masses in my right and left breasts. The mass in the right breast was removed. The left mass was not. Since then, I have only had problems in my left breast. I have had surgery in North Carolina (April 2012) and in Peru without anesthesia (August 2012). I work in international development FYI so I'm forced to move around a lot and work in developing countries. I've had drainage tubes put in twice and now I realize I have a new subareolar abscess. I have never had a proper diagnosis aside from the North Carolina surgeon telling me that I have mastitis and being very vague and dismissive. I'm sure I have IGM. I have no health insurance and the bills are piling up. At this point I'm trying to get into a clinical trial. My symptoms are identical to inflammatory breast cancer down to the inverted nipple. But perhaps others have experienced this? I just want to know if anyone is going to pursue contact with doctors who have conducted studies and written scholarly reports. I really want to participate in a clinical trial. I feel as though I have no other option. I can't get insurance because of the preexisting condition. I have thousands of dollars of debt and I'm in pain. I feel like there are no answers out there and I'm horrified by what I've read about steroid treatments. This is my first post. Sorry if it's all over the place.
8 Comments
Blank
Avatar_f_tn
I think most people have said they have said that their nipples invert when they have a flare up.  It is one of the ways that IGM mimics inflammatory breast cancer.  When you saw a breast surgeon, did they culture what they removed?  If so, they should have been able to diagnose you then with IGM of Breast TB.  I am seeing both a breast surgeon and a rheumotologist.  The breast surgeon/oncologist was key in figuring out the diagnosis.  Now, that we know I have IGM, the rheumotologist is really the one managing my care.   I would try to find one that specializes in auto immune diseases.  They are good because they treat other diseases that seem to use the same drugs for treatment (methotrexate and prednosone).  He knows a lot about how to manage those drugs and the side effects, etc. You might want to take the lab reports from the surgeon you saw to a Rheumotologist.  

(If you are looking for a cheap option, there are women here who swear by the Bentonite Clay.  I have tried it and it does relieve some of the pain.  It is $10 at Whole Foods Market.)  
Blank
Avatar_f_tn
My nipples became inverted after my surgeries. As of yet I have not found anyone who can reverse this. I am set to see a trauma plastic surgeon in 6 months to discuss this. I will let all know what if anything he may know about this ugly state of our breasts.

Also, I would love to know of any studies out there and would to join. Any info would be greatly appreciated.

I might add that working with your social service orgs in your area "may" be able to help you find medical service with a lesser fee. Different states and county's offer different services, its worth looking into.

Cyn  
Blank
7297290_tn?1389939528
Yes, after about a couple of weeks of me feeling what seemed like a hard golf size ball in my left breast, I started noticing my nipple becoming inverted. I looked it up online and that probably was the worst decision. Everything on there was about cancer, well that scared the s**t out of me and the following day I went to see a doctor.
Blank
Avatar_m_tn
Dont be scared of prednisone treatment. I thought it would be worse but its actually not too bad, definietly better than pain and helps a lot.
Blank
Avatar_f_tn
Thanks for your comment! Unfortunately, I am back on the forum because I have another flare up. I had one in July that wasn't treated but seemed to heal almost completely despite the large size of the abscess. There was just a pin-sized hole that would not heal. Now I am experiencing the same symptoms of a flare up again. I feel much better this time around because of health care changes that will allow me to receive treatment. After 6 months in Tanzania last year, I am finally settled in NY after a few months. I am looking into a doctor in Newark who I read is really excellent. I hope to have positive news soon. Thanks for sharing with me that you were also scared when you read information online. I have been living with a lot of fears for the past 4 years, since I first started having problems.  
Blank
Avatar_f_tn
Lisa

I was told they cultured what they found and not given many helpful details. I was sent to surgery and it was dismissed as mastitis. I really did not enjoy my experience with that doctor. At a time when things were both emotionally and physically very painful for me he was constantly in a joking mood. His bedside manner was poor, although I believe he had good intentions. I didn't receive a lot of information for him and I've always experienced surgery as my only treatment. I am eager to look into rheumatologists. I don't have all of my medical records readily available because of treatments over the past 4 years in 4 different countries - Spain, Peru, Tanzania and the U.S.
Blank
Avatar_f_tn
Cyn

Thank you for your response. I had my nipple inverted by a plastic surgeon in Spain where all of my medical care was free- including that procedure! The only difference is that it is permanently erect.They barely even asked if it was my preference, they just operated correcting my nipple to it's former state. That doctor's office was quite different than what I'm used to in the U.S. - both negative and positive aspects - but they corrected a problem, which has been rare in my experience with all of this. Now I hope to be properly diagnosed after so long.
Blank
Avatar_f_tn
Thanks russiangirl! Really encouraging (:
Blank
Recent Activity
Avatar_f_tn
Blank
Heathercmck joined this group
Welcome them!
Apr 02
Avatar_f_tn
Blank
ummtalha joined this group
Welcome them!
Mar 26
Avatar_f_tn
Blank
87CareBear joined this group
Welcome them!
Mar 19
MedHelp Health Answers