Hi @caseyk
I am sorry to hear you are suffering, I have heard of lots of PKD patients having similar pain.
I had PKD too but was able to have my giant old kidneys removed at the same time as my transplant at Mayo Clinic in Rochester (you can see my posts on it under Transplant). Because PKD kidneys continue to grow in size this may be a good option for you too, it may be a solution to your pain.
Good luck and I hope you find relief soon,
Jolinda