37 year old primary

I am a 37 year old with primary lymphedema in both legs. When I was born my feet were blue and I was labeled "crippled". I in fact walked at 8 months of age. Never in my life has a dr. ever expressed concern or recommended treatment for my legs. My right leg is much worse then my left and it has always been larger than the left. My nephew was born with the same type of foot and his pediatrician labeled it Milroy's, this is when my research started. I have been to 3 dr.'s, some take it seriously and recommend pump therapy, or lymph drainage; others tell me to lose weight and wear compression stockings. I have not begun the therapy because we have no dr.'s or therapists with very good experience. My HMO covers 20 visits per year(they say), of outpatient physical therapy, so I guess I'll start there. It is very frustrating and hard to believe that in 2000 there are no doctors specializing in this and no cure. In fact, I can't believe how doctors dismiss this whole lymphedema thing. I spend many nights crying and stressed out because of my anger at going so long without being diagnosed. Did I never see a capable doctor? Could I have stopped or controlled it before it got so bad? Are there any chat groups about this? I have never met another person with it as bad as me.