I have never joined a forum before, but like the rest of you, am struggling with this disease, so thought I would try this out. In July 2011 I noticed that my breast felt bruised, within 2 days I was in the doctor's office in incredible pain. My areola was red and so tender to touch. The doctor said I probably had a mastitis, but she couldn't rule out inflammatory breast cancer so she put me on antibiotics and sent me for a mammogram and ultrasound. That was fairly torturous. I didn't have cancer but I was ultimately referred to a surgeon. She tried different antibiotics to no avail. Finally she operated on me at the end of August 2011. She felt that I had a regular mastitis infection and that it needed to be drained. So she removed some tissue, and basted me shut and left in a drain. That was on Monday. By Tuesday afternoon the stitches had all popped out and i had a huge gaping hole in my breast. By Friday I was admitted to the hospital for IV antibiotics and IV pain meds. I felt better when I went home on Monday but I still had an open hole. No one knew what to do with me. After a couple of weeks, a collegue (spelling) of the surgeon sent me to the Wound Clinic since my hole was still not healing. I faithfully went to the Clinic for 4 months with no real success. They continuously tested the gunk that kept coming out of my hole and putting my on antibiotic after antibiotic. Finally I gave up and went to a new doctor in another town 5 hours away. She immediately knew I had GM, but did a punch biopsy to confirm. She had me try a dose of prednisone for 10 days but it did not help...in fact a new lump developed. So in January of 2012 she operated and removed a grapefruit sized amount of diseased tissue and basically gave me a breast reduction. I recovered well and thought my life was back on track until June. My breast started hurting again and the pain wouldn't go away. She tried the prednisone again, but again it didn't help. I had another mammogram and ultrasound and confirmed that the mastitis has returned. So I drove up to discuss my options with her. She said that after my surgery in January, she and her collegue went to a medical conference where a doctor gave a presentation specifically on GM, He has apparently had 40 patients and he has determined that it goes away as mysteriously as it comes. But he also said it goes away in a year. So my doctor wants to try the wait and see thing. She wants me to try to wait it out. It hasn't developed as far as rupturing or anything. In fact she agreed that I didn't need a biopsy as that would just anger it and give it a means of escape. But if it did end up acting up and rupturing we would then discuss surgery again.
The thing is, I've read everyone's story on here and some of you have definitely been struggling for longer than a year. And I also went up to see her expecting to be discussing a mastectomy. I am not willing to try the metholrexate option. My birth mother has Rheumatoid arthritis and was on that for years and her body is destroyed because of it and I am not interested in going down that road. So in my head, I assumed that mastectomy was the only way to go. I feel a little relieved that I am not facing that at this point now, but I do not have very much faith in that lasting, because for all intents and purposes, I too have been dealing with this disease for over a year now. I am not really sure why this one doctor feels that it goes away so "easily" in a year. So I guess I'm just wondering if anyone else has heard this "rumor" or had much success in the wait it out thing.
Thanks for reading, sorry that I wrote a novel.
I know it is hard to live through this. Mine started August 2011. Now I am doing better. I have inflamation here and there, but it does quiet down. I have been drinking green tea to reduce the inflamation and pomegranate concentrate to help me heal. The pain is gone, my energy is up. I have even been able to exercise again.
My story is similar to your's. Antibiotics, surgery, wound care clinic, infectious disease, persidone, draining and waiting.
You will get better...it takes time and patience. Stay positive and strong.
I didn't want to do the surgery to remove my breasts. I felt it in my arm back other side and as one dr. said what are you going to keep cutting away at yourself if this is an auto immune disease that won't help. I did want mine off at one point and I am glad I didn't do it.
The pain is not there like it was and I can excercise. I just have to be careful of what type I am doing.
I didn't want to do the chemo thing either.
I think it can only keep getting better, but I need to remember my vitamins!
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