Just thought I would share my experience. I first suffered from swollen ankles and legs when at university, aged 19. I was referred to a top teaching hospital. My kidney function was tested. I was told there were no problems.
Each year, especially summer, it got worse. When pregnant, in the long hot summer of 1976 I was in constant agony. Year after year I suffered the intense pain of feeling as if my shins were about to explode. Long meals with friends left me with legs like tree trunks. Holidays in hot countries were awful and I now know I developed cellulitis (thought I was allergic to volcanic dust as we had visited Pompeii and Vesuvius!!).
Year after year I would ask GPs what was wrong, only to be told I had 'painless oedema of the ankles'!! As a teacher, on my feet all day, I was often in agony. Eventually, I tried in desperation and saw a GP I had never seen before and poured out my wows. He actually named what he thought I had, Milroy's Disease aka Primary Lympoedema and he referred me to the specialist lymphoedema nurse at the local hospice.
She was amazing: she understood!! She took a genogram and I realised that it would appear I had inherited the faulty genes from my maternal and paternal families. When she asked me (because my right leg is always worse than my left) "I bet on photos you look as if you only have one leg as you hide the right behind the left" I burst into tears.
Over a few consultations and checking progress by measuring my legs, ankles to groin, to the nearest mm, every 2 cm each time, she taught me exercises and simple lymphatic drainage, and prescribed compression hose.
I had had to wait nearly 50 years for my diagnosis. My wonderful GP explained that the field of medicine is so vast that no one GP can know everything. Thank goodness he did.
I am now pain free (mostly!). I wear my hose religiously; likewise do my exercises. I wear long skirts and trousers. On holidays I occasionally go without the compression hose for a day to walk on the beach. I patiently explain to each new practice nurse what they are supposed to do when I need re-measuring every 6 months for my new prescription. I have to argue with new GPs to give me a prescription of antibiotics to take abroad in case I develop the first signs of cellulitis. I have done my own research on the internet. I know that they are exploring the genes responsible for my condition.
I do all I can to spread the news, I have even spoken to ladies in town and advised them what to say to their GP to get a diagnosis.
I will live my life as free as possible!!