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Sorry this is long. I'm just gonna explain! You can skip to question at the bottom if needed.
For years I suffered with debilitating pelvic pain. It slowly got worse until I was in a wheel chair for anything that involved walking for more than 10 minutes. I was diagnosed as osteitis pubis of unknown origin for most of this time. Imaging showed bone and cartilage deteriorated over time. The front center of my pelvis, my symphysis pubis, had lost all cartilage between the bones and had eroded into both sides of my pelvis.
It started sometime after I had my first, maybe even my second child. At least 3 years ago. They were 1&2 when it started getting really bad, they are now 3&4 years old. It took a long time to find a Surgeon who could help me, most wouldn't touch me because they didn't know what caused it. So I finally found a surgeon and on 4/20/16 I had a bone resection. They biopsy bone and tissue, cultured etc, and out of everything only one grew anything so they figured it was a contaminant. Well 2 months later I still wasn't healed from surgery and continued to get worse. Started draining pus, went up for a wound clean out in hopes that was it.
Ended up that I had a bone infection the entire time, it was just undetected/undetectable the entire time. I did not have a fever, no redness, blood tests were all normal except for sedimentation rate. So when they opened me up they had to take out even more bone and tissue in hopes that they got the whole infection cleared out. They also put antibiotic beads in my pelvis between the bones and everywhere, looked to be about 50 on my Xray. Then I was on a picc line for 3 weeks getting vancomycin every 8 hours, then another 4 weeks on moxifloxacin. I just finished those.
I had co-infection, original infection was propionibacterium acnes which led to staph coagulase negative also. P. Acnes grew in my original culture but they dismissed it.
I'm hoping this is the end of a long long road and that I'll be relatively normal. I'm currently doing better than I have in years, I can walk 1-2 hours before I have to stop. That's a lot of progress, but I haven't improved at all the last few weeks, I think I'm just the best I'll be. Damage is done type thing. They can't amputate my pelvis, in fact removing anymore bone wouldn't be good either. If they had to remove more bone I'd end up with metal plates etc to rebuild my pelvis I think. And then that just increases infection risk
I'm just curious from actual experience, how likely it is to come back. If anyone else had propionibacterium acnes as the original infection,because I can't find any information on it. Thanks in advance!
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