Hello everyone :)
A Lot has happened since I posted last, and I want to share with you my GM story and how it's all worked out. (Long post ahead).
My first bout of GM was at the end of 2006 to early 2007. I had no idea what was happening, and neither did the doctors or surgeons. After the first spontaneous "explosion", they started doing surgical drainings, looking for cysts and, finally, dismissing me. The last time I saw the general surgeon, his words to me were, and I quote: "Well, at least when it blows up and drains it feels better, right? The exit in this office is to the right." UNBELIEVABLE!
Not everyone in my life was supportive, but most were, even if they couldn't understand or *see* what was happening to me. My husband was very supportive, and that helped me so much.
I got increasingly worse with pain, "explosions", constant high fevers and progressive debilitation. I was so run down I also caught every virus, cold and flu going around, and my life became very closed-in and small.
But God is good! One of the men in our church is a highly specialized Gyno-pelvic reconstructionist and a head Professor at St. Louis University. He recommended I see his friend, another top professor and head of the Dept. of Gynecolological and Breast Oncology, and got me in to see him immediately, rather than the 6 month usual wait for an appointment. This was December, 2009.
This Dr. knew exactly what it was by my description, having seen one other case in his 30 yr. practice. From there we tried various treatments--more antibiotics, surgeries, even Tamoxifen to see if blocking Estrogen to the breasts might help. Nothing worked. I have trouble with steroids, and decided not to take them since they didn't seem to produce a definitive "cure", and my Dr. didn't want to use methotrexate at all. We decided that we would try to wait this out for a few years, until after menopause.
In July/Aug., 2010 I had another "flare up", and was scheduled for surgical draining the next day. When he went in, *nothing* came out, in spite of the obvious abscess. He removed a large mass of sclerotic tissue, the sinus and other strange stuff, and we finally began to talk about mastectomy.
By this time I was so sick that I was non-functional. Although he really hated taking such a drastic step, we were out of options, and "waiting it out" was no longer possible.
Because of this group and the information so generously provided by other women with this disease, I made the decision to proceed with a bilateral mastectomy, not sparing the nip*les. This choice isn't for everyone, and it's no picnic, believe me. But, I had no life, and had spent the past several months sick, useless and in pain. After 3+ years of messing with this craziness, I just wanted some kind of life!
I had the surgery on Nov. 1, 2010. They sent everything to a pathologist who, after looking at it, immediately sent it to another pathologist who specializes in breast tissue. Now, here comes the amazing part:
Present in both breasts were 4 separate pre-cancerous conditions, and several types of pre-cancerous cells. (COMPLETELY UNRELATED TO THE IGM!) The question of me getting breast cancer was not "IF", but "WHEN". I had stopped getting mammograms because of the painful lesions, so I would never have known until it was too late. The Lord used this rare, bizarre disease to save my life. He is amazing!
It's been a long road to recovery, both from the months of debilitation and from the mastectomy, but I'm much better and stronger now. My husband and I have decided not to proceed with any reconstruction. With my history I would just be asking for trouble. Also, I just want to be "done" with all of this, and can't stand the thought of more surgery. Prosthetics are "different", and I'm getting used to my new normal. Although this was not an easy decision, and definitely isn't for everyone, it was the best decision for me, and I do not regret it even a tiny bit.
I do wonder about possible other immune system issues, but only time will tell. I've started getting a life back, and I'm grateful.
I continue to pray for all of you. I hate this disease and what it does to us, and I will continue researching, reading and trying to connect the dots. This group is invaluable--for information, yes, but also for support. I've said before that, unfortunately, WE are the experts when it comes to this disease, and I urge everyone to continue sharing your experiences.
May God bless each of you,