I was born with a UPJ obstruction which was not diagnosed, discovered & repaired until last year(2005). I decided this week to check out these message boards to see if I could find an adult female who shares the experience I have had. I have a wonderful supportive family, especially my husband and sister. Problem is I still don't feel better after having my kidney repaired in 2005. I am hurting every day to varying degrees. I wake up most mornings in pain and during the night. I just want to feel better without having another surgery. When someone asks me how I feel I appreciate there concern but I hate to tell them...I don't want to sound like a complainer...but I am so tired of the pain & burning in my side. I hate going to the doctor to hear the same thing even though I do like my doctor. He says, "I'll tell him when I need to have something done". That is the same thing he always told me before he repaired my kidney. He said I was born with a small opening at the pelvic floor where my kidney meets my ureter(right side). The opening was previously the size of 3 pin holes and so he expanded it to 10 times that size. Since he says I have probably had this from birth my kidney expanded to triple the normal size and remained that way even after the surgery to make the opening bigger. Over the years my pain became unbearable and constant....after the surgery I have pain daily but it isn't always constant. He theorizes that it fills to capacity like before but instead of continuing to stretch giving me the constant pain the pressure can be relieved with more regularity. My IVP, nuclear renal scan, ultrasound shows that my right kidney is hydronephrotic and has not shown to completely empty. (hence the burning??? I don't know) I don't know how this contributes to my overall sense of well being because I have good days, better days and very bad...but the pain is ever present and I'm not sure how long I can deal with it anymore. Presently, I've been given two options: one... live with the pain, deal with the infections, monitor function, levels, etc., and take a narcotic (I don't know how anyone can take these for very long and have a normal active life) or...two....have it repaired again. This was repaired last year and he said it would probably need to be done again in five years....but it hasn't even been 5 years. Opinions? Anyone with an identical experience?
Hi..yes, hydronephrotic kidneys hurt like hell!! Since you don't want anymore surgery, than I would suggest taking the pain meds. I take potent pain meds daily (Fentanyl...Fentanyl is 100 times stronger than Morphine). You won't need that. I take that due to chronic pain from my kidneys. After your body adjusts to the pain meds (no more drowsiness, etc.) you will completely normal without pain or minimal pain, though. Why torture yourself. If you need the pain meds, by all means, take them. You won't be an addict, you will just be dependent upon them if you take them everyday. That's called physical dependence, not addiction.
Physical dependence is a normal thing when taking long term pain meds. Addiction is totally different. Also, pain patients are very rare that become addicts, less than 0.1%. Addiction is a psycological disorder where you crave these meds and do anything to get them and taking them for no medical purposes. To put it this way, if the pain meds improve your quality of life, you are a pain patient. If the meds destroy your life, you are an addict. Does that make sense. Please, please, talk with your doc and stop putting yourself though this hell, ok??? Take care!
Last edited by friendly_one; 05-14-2006 at 04:56 PM.
I was diagnosed with a UPJ Obstruction in Nov 2004. I just got done with my 5th surgery! I had major reconstuctive surgery on my left kidney, and I am still in pain. Accordining to all my x-ray's everything is "draining" but I just can't believe that is true. I often too wonder when will the pain go away. It's not constant, but I feel pain alot, especially when I am active. I also constantly run low grade fevers and I always get infections. I feel your pain, I wish I had an answer, cause I know exactly what you are going through!
Several years ago I had my left ureter resectioned because there was a growth on my ureter preventing my kidney from draining properly. The majority of my kidney function on the left side had already failed before I even knew I had a kidney problem to begin with. When my kidney was not draining properly and the crystals were getting together it created an infection stone. So, I had a struvite stone and a growth preventing urine from leaving my left kidney.
I have a 4mm kidney stone in my left kidney and it will not pass because my left kidney does not function. This is pain that I have had to get used to on a daily basis. Some days are better then others.
I am not going to have my urologist remove my left kidney unless it is absolutely necessary and I just can't handle the pain.
My right kidney functions normally but, is a stone former too. I had a 5mm stone for quite a few months and I just passed it in April. I feel very fortunate that I passed it since it was 5 mm and thats the limit on the size a person can pass. I have dots of calcium oxalate or shadows in my right kidney that would love to become kidney stones if they could. Thats why I just keep drinking that water.
I'm sorry to hear that you are in pain. I do understand. I have been there. Here, twice in May my right side started hurting me so bad that I had to go to the ER and that is really bad for me. I don't like to go to the hospital. In April I had a stent placement and I think, I'm not sure, but, I think the inside of my ureter did not take kindly to the procedure at all. It's either that or I was passing more kidney stones. I form them fast.
I take Hydrocodone for stone pain. My urologist and nephrologist have given me rules on taking it since I only have one good functioning kidney. Some times the pain medication works and sometimes it doesn't touch the pain.