Aa
Thankful to find this community
Hello all,
I don't have a question at the moment, though I'm sure my mind will be filled with them once I log off. I just found this group last night and spent an hour reading many of the posts. I'm grieved to hear about how deeply this has affected some of your lives, but thankful to know that I'm not alone.
My diagnosis isn't totally "official" yet, but I feel pretty certain that I have IGM. I am 33 years old and up until about six months ago, I was as healthy and strong as the proverbial horse. I found a hard, painful lump in my left breast in July 2010. I was seven months pregnant at the time (with my fourth child), so my midwives thought it was just a plugged milk duct (which apparently does happen sometimes during pregnancy) and had me do all the common treatments at home. The lump spread into a mass. A short course of antibiotics didn't reduce the pain, so they set out to have me try other things (mostly naturopathic remedies). Fluid cultures showed a non-MRSA staph infection, so we assumed that that was the problem for a long time. Eventually, I got my first of many ultrasounds to rule out cancer...followed by needle aspirations, weekly visits to the surgeon, weeks & weeks of antibiotics, lots of pain and fear, et cetera. Several abscesses formed, which had to be drained with small incisions. I am incredibly thankful now that my surgeon was so reluctant to operate on me. She wanted to give me every chance to breast-feed, and figured that a large incision would only lead to milk fistulas and more complications.
About two weeks after I gave birth to my son, I had a very, very small surgery to do another biopsy and explore the current incisions. It seems weird to me now that I was gone for almost the whole day from my newborn son--that I was getting surgery so soon after giving birth--but I think at that point I was so tired of the pain and the uncertainty. No one could figure out what was wrong with me and I dearly wanted the surgery to hold the key. Of course, it didn't.
I got an MRI after giving birth as well to give them a bigger picture of everything. After the staph cleared up, my cultures kept coming back negative for infection, so I felt stuck in a holding pattern. I was also trying to breast-feed using my non-infected breast, and not having much success. I couldn't pump anything out of the infected breast, so although breast milk kept flowing out of the incisions, the milk ducts in the infected breast kept filling up and causing tons of pain. I was eventually advised by my surgeon to stop breastfeeding so the ducts would stop filling up. I hated this advice, but it made sense (especially because we hoped that I would start healing once that happened). I made one more last-ditch effort to breastfeed by (finally) seeking out a renowned breast specialist in the area. Once she saw my situation, she agreed that ending breast-feeding made the most sense. By my second visit to her, she printed out a page on IGM and I finally ceased being a medical mystery (in my mind, at least).
I took the diagnosis back to my surgeon and he was less certain, but open to the idea. He got in touch with a rheumatologist (sp), who drew up the lab sheet for all the auto-immune tests. I got the blood draw today and hope to hear the results soon. It's not that I'm eager to be diagnosed with IGM, but I'm definitely hoping to have a better understanding of possible treatments.
I'm approaching my 6-month mark since I first found the lump. I'm no longer in active, awful pain, which is a blessing. I can even sleep (very carefully) for a little while on my left side. I have two open incisions that are red and leaking fluid (a combination of breast milk and pus (I assume?)) and one needle aspiration site that occasionally leaks fluid and looks puckered and angry-red the rest of the time). I had a surface abscess form and then burst a few weeks ago, which left a hole behind with nothing underneath it (which is a little creepy). The left side of my breast is still lumpy and hard and malformed.
I don't know what the next step is, even if I do have IGM. I've done two very short courses of prednisone (one for 2 or 3 days; one for 5 days), which my breast specialist prescribed to reduce the inflammation. They seemed to soften the tissue up a little, but not permanently, of course. It's been such a hard year--between this, the pregnancy, and now the very tiring newborn stage--that I am hoping for a little breathing room before launching into more treatment.
Again, I'm thankful to find this group. I told my story in such detail partly because it has blessed me to hear your stories. In spite of a loving husband and awesome community, I have felt somewhat alone for the last six months.
Take care,
Margaret Ann
I don't have a question at the moment, though I'm sure my mind will be filled with them once I log off. I just found this group last night and spent an hour reading many of the posts. I'm grieved to hear about how deeply this has affected some of your lives, but thankful to know that I'm not alone.
My diagnosis isn't totally "official" yet, but I feel pretty certain that I have IGM. I am 33 years old and up until about six months ago, I was as healthy and strong as the proverbial horse. I found a hard, painful lump in my left breast in July 2010. I was seven months pregnant at the time (with my fourth child), so my midwives thought it was just a plugged milk duct (which apparently does happen sometimes during pregnancy) and had me do all the common treatments at home. The lump spread into a mass. A short course of antibiotics didn't reduce the pain, so they set out to have me try other things (mostly naturopathic remedies). Fluid cultures showed a non-MRSA staph infection, so we assumed that that was the problem for a long time. Eventually, I got my first of many ultrasounds to rule out cancer...followed by needle aspirations, weekly visits to the surgeon, weeks & weeks of antibiotics, lots of pain and fear, et cetera. Several abscesses formed, which had to be drained with small incisions. I am incredibly thankful now that my surgeon was so reluctant to operate on me. She wanted to give me every chance to breast-feed, and figured that a large incision would only lead to milk fistulas and more complications.
About two weeks after I gave birth to my son, I had a very, very small surgery to do another biopsy and explore the current incisions. It seems weird to me now that I was gone for almost the whole day from my newborn son--that I was getting surgery so soon after giving birth--but I think at that point I was so tired of the pain and the uncertainty. No one could figure out what was wrong with me and I dearly wanted the surgery to hold the key. Of course, it didn't.
I got an MRI after giving birth as well to give them a bigger picture of everything. After the staph cleared up, my cultures kept coming back negative for infection, so I felt stuck in a holding pattern. I was also trying to breast-feed using my non-infected breast, and not having much success. I couldn't pump anything out of the infected breast, so although breast milk kept flowing out of the incisions, the milk ducts in the infected breast kept filling up and causing tons of pain. I was eventually advised by my surgeon to stop breastfeeding so the ducts would stop filling up. I hated this advice, but it made sense (especially because we hoped that I would start healing once that happened). I made one more last-ditch effort to breastfeed by (finally) seeking out a renowned breast specialist in the area. Once she saw my situation, she agreed that ending breast-feeding made the most sense. By my second visit to her, she printed out a page on IGM and I finally ceased being a medical mystery (in my mind, at least).
I took the diagnosis back to my surgeon and he was less certain, but open to the idea. He got in touch with a rheumatologist (sp), who drew up the lab sheet for all the auto-immune tests. I got the blood draw today and hope to hear the results soon. It's not that I'm eager to be diagnosed with IGM, but I'm definitely hoping to have a better understanding of possible treatments.
I'm approaching my 6-month mark since I first found the lump. I'm no longer in active, awful pain, which is a blessing. I can even sleep (very carefully) for a little while on my left side. I have two open incisions that are red and leaking fluid (a combination of breast milk and pus (I assume?)) and one needle aspiration site that occasionally leaks fluid and looks puckered and angry-red the rest of the time). I had a surface abscess form and then burst a few weeks ago, which left a hole behind with nothing underneath it (which is a little creepy). The left side of my breast is still lumpy and hard and malformed.
I don't know what the next step is, even if I do have IGM. I've done two very short courses of prednisone (one for 2 or 3 days; one for 5 days), which my breast specialist prescribed to reduce the inflammation. They seemed to soften the tissue up a little, but not permanently, of course. It's been such a hard year--between this, the pregnancy, and now the very tiring newborn stage--that I am hoping for a little breathing room before launching into more treatment.
Again, I'm thankful to find this group. I told my story in such detail partly because it has blessed me to hear your stories. In spite of a loving husband and awesome community, I have felt somewhat alone for the last six months.
Take care,
Margaret Ann
You are most definitely not alone. A small comfort.
This disease is most certainly out there, and I am sure if awarenss increased amongst medical practitioners, we would have an even higher penetration of cases in the breast centres.
Please ask any questions, a number of the members (survivors is probably the best term), read the posts and will respond if they feel they can help. You will find a pretty good representation of healing methods and results here for reference.
IGM ***** - not much good about it, but you can beat it, and move on.
Thanks for contributing, you are helping other women by doing so...
Jo
This disease is most certainly out there, and I am sure if awarenss increased amongst medical practitioners, we would have an even higher penetration of cases in the breast centres.
Please ask any questions, a number of the members (survivors is probably the best term), read the posts and will respond if they feel they can help. You will find a pretty good representation of healing methods and results here for reference.
IGM ***** - not much good about it, but you can beat it, and move on.
Thanks for contributing, you are helping other women by doing so...
Jo
Hi i am new too and like you am happy to know there are other women out there to share with and who understand.
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