Hello. I am a six year single cell renal carcinoma survivor. Fifteen years ago diagnosed with Medullary Sponge Kidney. Mild, mostly micro cysts and micro stones. I live with chronic kidney pain from the disease. Last year I received a Neurotransmitter implant to control other pain in the left kidney due to scar tissue damage from the partial nephrectomy . I have been going thru a transition from my PCP of seventeen years retiring to a new PCP site and starting fresh. I feel like doctors do not have enough time to help me during my visits when I am feeling poorly. Unfortunately; I have had allergic reactions and adverse side effects for all pain killers except Tylenol. Laudnem was given to me for my cancer surgery pain. I had used T3 only as needed for controll of my daily kidney pain, careful not to be an addict. I was told to admit myself into a Psyc Unit two years ago to go thru withdrawl of my T3 in a controlled medical environment because I did not know how my body would react after at least fifteen years of use. The experience was horrible, treated like a convicted addict, I now question if I should even had gone through it. My depression and anxiety at at an all time high from being bounced from a Pain Therapy clinic to Outpatient psychology. All pain relievers given to me since stopping T3 have either created more bad reactions or caused allergic terrifying reactions- violent nausea & vomiting, paranoia, mood swings, panic attacks and more. The dr at my Pain Therapy clinic states there is nothing further they can do. My new PCP site has seen me only three times since October 1st. In September, genetic testing showed I am a SMARKA4 carrier of the lesser level. I have cysts monitored in my breasts, both kidneys, both ovaries an on on my liver. I have had a tangerine size cyst removed during exploratory surgery ten years ago from my lower abdomen just in front of my uterus. Recently tinnitus, dizziness and vision changes have caused me migraines and falls. A CT scan last week with & without contrast showed nothing abnormal. I am constantly tired, have headaches and migraines, lack of appetite, vision changes and today I noticed my abdomen is bulging out right above my left waist to under my ribs. My pain is getting stronger than usual level. I feel like it is hard to trust doctors to be examined since I am so complicated. My ovarian cysts are being monitored every 90 days by my gyn with ultrasound. If I go to my hospital ER I am placed with residents and doctors with no knowledge of my history and usually leave with no answers or direction. I also have Steven Johnsons Syndrome. I am receiving outpatient therapy to deal with my lack of trust with my health system. I feel trapped - my husband works for the health plan & system so our insurance covers everything in network. I have not worked in four years because of permanent memory loss from general anesthesia and short term loss from the many pain medications my doctors have tried since stopping opiates. Can this be some form of ptsd? I fear seeking treatment for problems I know I should. I am not a drug seeker and have been so careful to not be noted as one. My new PCP is shocked by how many of my problems have been mishandled by my health plan & System. His PCP is a coveredsite not in the network. I am in so much pain mentally and emotionally but am scared to death of seeking help. Our country, state and medical systems have failed to support chronic pain patients who have been careful not to become addicts. I am a responsible mom of four and have a loving husband. I feel invisible to my surrounding friends and family- my daughter says “mom’s always in pain, her kidney always hurts” I don’t double over in pain, keep up my appearance, bathe, dress nice. The world does not picture me as someone living in my hell. I am a devout Catholic and don,t believe in suiaside. Please help me. I have tried to be patient with my world. I feel like closing the door to the world and existing alone.