To begin with, I'm sorry to hear you have GM. I too, suffered for sometimes now. You may read my stories in some of my old posts.
Similar to you, I'm Asian, 32. I have 2 boys (2 and 4) Both were breastfed. I breast-fed my 4 years old for 8 months. And, when I was 5 months pregnant with my younger boy, my first flare up began. I had biopsy that led to unknown mastitis. Than, when I had him for the 4th day, I had fever and new flare up on the other side of my breast.....followed by needle aspiration and skin rupture due to over stretched large cyst.....I know...it's gross.....but the ruptured-hole was bigger than the size of a quarter.....And with two ruptured cyst on eachside of my breast, I managed to continue to breast feed my son for 4 months...(Looking back, I'm not sure how I did it!!! Must be my believe for the overrated benefits of breast milk for babies...and the mother nature love kicked in too much!!!!)
2 years later, I got another flare up. This time, the lab confirmed I had GM. I have been fighting this one for 3 months now. I began treatment with antibiotic...which didn't work...and my breast surgeon made a cut for draining. At first it was very painful with this procedure and with repacking a strip each day to keep the wound open for further draining....sounds brutel I know......but....at least that stops the cyst from growing bigger....Still....cyst relocated itself to another place after the old one was about to heal...
I refused to be cut again...so I'm now on Steriod. Steriod works like wonder.....it shrinks the cyst immediatly. However, once I'm off, the flare up comes back.....so annoying.....I'm already on my 3rd round with steriods....if not get anybetter after this one, my doc won't give me anymore steriod....she will perform a surgery on me by open up my breast and flush out as much pus as possible and stick a tube there for further draining......
Sorry....am I scaring you with all these info....
Everyone is different. I wish yours will just disappear tomorrow!!!!
I'm not sure what caused this....if you know, please let me know too! I hope we can all find a solution to this....I didn't know nursing a child will cause so much pain.......
May you get well!!!
I haven't answered any of your Q
1. I have not seen Rheumatologist yet.
2. Yes, I had lots of pus drained out too. we are talking about 4 ounces and more......
I sometimes hear my surgeon giving me a "wow" sound with how much pus that flows out ...
Seeing a rheumatologist is a common next step with this disease. It can also be helpful to see a breast surgeon or breast specialist. It kind of depends on what steps you might be interested in taking in treating this disease. There are things that can sometimes "help" this disease - medications like steroids or methotrexate (it would be good to see a rheumatologist for these), surgery, etc., but there is not anything that actually cures it - in fact, some of the treatments can make the GM symptoms worse.
My exerience has been that I have chosen not to do any kind of surgery, medication, etc. I'm just trying to wait it out. That has worked about as good as anything else. I have not had any abscesses for 5 months, but I still have a lot of painful lumps, and I still feel sick and rotten a lot of the time. So...I can't say that I'm all better....but it is better than it was initially. I just decided that I didn't want to deal with the side-effects of the medications (some of which are very scary!), or deal with the emotional and physical stress of surgery, so I am just waiting it out.
YES, it is normal to have a LOT of pus and gross stuff drain out of an abscess. I have had as much as half a cup (no exaggeration) drain from one abscess before. I know....it's frightening, upsetting, and not fun at all.
If you have questions, you should ask them here, and we will all try to help.
Thank you for responding! I am sorry to hear about your case. You are to be highly commended for breastfeeding your son while you had open sores--what a devoted mother!!
My husband did some research on this site after I told him about it. He read a post where a woman talked about a doctor who has seen a number of GM cases. We contacted her office and I'm flying out there for an appointment next month. Coincidentally, my husband is from the same city. We're bringing our 1-year old daughter and she'll be able to see her grandparents. Hopefully, the trip will be a win-win situation!
This site has proven very helpful and I'm so thankful we found it!
I don't know what brought my case on. I discovered the small lumps and they grew to full blown GM lumps complete with ruptured sores and holes within about 8-10 weeks. It came on very quickly. I had some ongoing trouble (pain, clogged ducts, mastitis) breastfeeding my daughter until she was 4 months old--so, when the doctors called for a mammogram, ultrasound and biopsy after finding the lumps, I had an inclination that it was somehow related...and I was right!
I hope your GM gets better. Keep me updated and thanks again for responding to my questions!
Thanks for answering my questions! I have found a doctor that some of the women have talked about in this forum and made an appointment with her next month. I also went to my doctor (obgyn) today and I am going on a round of antibiotics until I see the more specialized doctor next month and to help treat my open abscesses.
How long did you have the open abscesses? Did you take any antibiotics? What kind of 'sick' side effects do you have from GM? It seems I've been more tired the last couple of weeks but I thought it was due to our 90+ degree high humidity weather.
I am willing to try the antibiotics, especially in consideration of my sores, but I really don't want to try steroids unless I am in dire need and it's almost a last resort. I definitely don't want to have any kinds of cuts or surgeries since it hasn't even been proven that there is no "cure" and GM can and will (from what I've read) flare up again.
The upside to having to deal with the open wound and pus is that the sensitivity and pain has gone away. I could hardly hold or rock my daughter without cringing in pain when she'd move or hit one of my breasts. It broke my heart! I'm anxious to go see this doctor next month and see what she says. None of the doctors around me have ever treated or heard of any GM cases. I'll keep you updated.
Hi and welcome. Im glad u are getting to see a specialist and hope it is a win win trip for u. PS and blood seem normal from the abscess bursting I had my first one burst about a month ago. I have taken several rounds of antibiotics at first being diagnosed but my doctor and I felt they weren't helpful unless I develop a secondary infection. I have been on prednisone and methotrexate for about 3 months now and am having a little improvement but no miracles. Treatment is on some ways ur call since there is no definitive treatment do your research and decode what u want to try and see what works for u everyone has their experience with this crazy disease. A rheumatologist is a good doc to have if u are interested in trying meds they are who usually regulate them. I also see a breast specialist that takes care of my boob as r as monitoring any abscess, draining them as needed, pain management, and documenting my disease. My breast specialist here in Atlanta has seen 4 cases in their practice so I'm lucky they are familiar with it lol. I was diagnosed December 2010. I too breastfed ( a year) my son who is now 3 years old. As for the sick feeling it seems many of us have in my case I feel exhausted and weaker during a flare up and extremely painful with even some muscle spasms on the side with GM and across my chest. I hope u heal quickly and find the info u are looking for. This group is amazing and everyone is so supportive.
Good for you. I must have been really hard for your husband to read all these posts. It can be hard enough as women, but for him to hear this stuff has got to be really really hard. I know you are afraid of the steroids, but they do offer relief from the accute nature of your symptoms and inflamation. The doctor in Seattle should talk about this with you. One of the girls on this site talked about taking pro-biotics at the same time as her anti-biotics. I would recommend this to you. Anti-biotics kill all the bacteria, good and bad, so replenishing the good with pro-biotics is a really good idea. Expensive, but good. It will help with some of the side effects of the steroids and long term use of Anti-biotics.
I am so glad you and your husband have developed a treatment plan.
Everyone has given you such great advice and info...I am hopeful that you know that your case is very typical with the history of breastfeeding and then the onset of IGM. So you have not 'done' anything to get this, other than likely having elevated hormones and prolactin levels and an autoimmune response in your body.
The fatigue is normal - the inflammation is your body's immune system working really hard it is enough to make you very tired. Think of the fatigue you have whenever you have a flu or cold and your body is trying to fight it off...
I wish you well and keep us updated please.
I am glad that you will be getting in to see a specialist. I hope that he/she is able to help.
I had abscesses for about six months, but I haven't had any since January. (I am SO thankful for that!). I took seven rounds of antibiotics last year, and I don't think that they helped at all; in fact, I think they made me feel worse, over time, by running down my immune system. Some of the women here have used antibiotics when they have an open wound, to prevent a secondary infection, and it sounds like that works well for them; I just found that it didn't work for me.
My 'sick' side effects which are still pretty bad sometimes, include flu-like symptoms, extreme fatigue, difficulty concentrating, pain in some of my joints, headaches, and a burning/tingling sensation in the right side of my scalp/head. I would say that feeling tired is pretty standard for this disease. I also had pain in my abdomen on the side of my body that is affected by the IGM. This lasted for several months, I had lots of tests, and of course, they didn't know what was causing it. Thankfully, that seems to have gone away for the most part.
I feel the same way that you do about not wanting to try surgery or steroids if you can avoid it. I think I have done pretty well without those treatments. I can't say what condition I would be in if I had tried any of them, since I refused, but in comparing my stories with others here, I can't say that I am worse off for not having tried them. I feel like I am doing ok now. It isn't gone, but it is not as bad as it used to be. I still have the scary, painful, changing lumps in my breast, and I am always afraid that they will develop into an abscess, but for now I am doing pretty well. Definitely better : )
Yes, the upside to having an abscess burst open is that it relieves the pain. I was always thankful once mine were open. : )
Thanks for sharing. I'd be glad to answer more questions if you need help : )
And please do keep us updated.