I 1,000% feel you on this. I am actually in the process of getting diagnosed with my 8th rare disease, and it's all about adipose tissue (fat), and it's absolutely crazy. I actually did all of the work/research myself and am guiding my doctors. But I think you might be interested and maybe can do a little digging yourself if you look up lipedema and lymphedema too. Right now they are listed as rare diseases, but they are actually happening at the rate of about 10-12% of females. The number one thing to keep in mind is that it's not your fault. I have a related disease that is very rare called Dercum's, but what I found out about lipedema/lymphedema was pretty interesting. There are certain Facebook groups I would also recommend too.