I have been through this as well but have Medullary Sponge Kidney disease.. and most of it was also connected to the many stones in my kidneys and a chronic infection that set up in my stones.
1) Could you have a chronic kidney infection? It may not show up on cultures but you would see the pain improve on antibiotics!
2) After years of this type too... I was soo bad one day of a CT scan I thought for sure they would keep me at the hospitial. But nope did the scan and sent me home...
however we got very lucky. The tube going to my left ovary was dialated just like a ureter gets with a stone. I have had stones the pain feels the same. I was diagnosied with Pelvic Congestion Syndrome. This rarely shows up on test because it can only really be seen when you are standing!! When you lay down the blood flow goes back.
They wanted to do a hysterectomy but I found a pelvic pain pT who taught me to move the blood flow around. I would encourage you to check into this condition and just see if the symptoms fit what you are experiencing!
Shelly
Thank you so much! I am in the process of fighting... and not giving up until I get an answer! I went to the doc the other day pretty much saying that a normal CT scan is not normal since I am having so much pain.
Another symptom the last 2 days is lower abdominal pain... both sides where my ovaries are... this just started 2 days ago.
I haven't had much nausea... I did a few days ago but that is about it.
I don't know if this has happened to you, but I had similar symptoms for about 4 months now (attacks, as I call them) I would be in excruciating pain all night and then nauseas for a few days. It would come and go. It finally got so bad that I insisted that my doctor order a CT. Well, it came back normal. The attacks kept up and got more frequent. I thought I was losing my mind. 2 months later, I finally went to Urgent Care and cried to the doctor and told her that I could not take it anymore. Like you, I had alot of blood in my urine. She said that she thought for sure it was a kidney stone, but since my CT results were normal, she wanted another one to see for sure. Sure enough, my 5mm kidney stone had moved out of my kidney, down 4 inches in my ureter. I was shocked that it was not reported even though the doctor that read the new picture actually saw it on the first one. I called and complained to the hospital and they told me that if a stone is in your kidney on a CT, they consider it normal since so many people have them. They will only mention them if they are outside the kidney. My stone kept popping in and out of the kidney so I really needed to know that information.All of the pain was when it would come outside of the kidney. It won't hurt when it's inside. Have your doctor check the actual CT picture (not the report) and have them look to make sure that you DO NOT have a stone in your kidney. I wish you the best. Just keep going to different doctors until you are satisfied! You know your body and you know when something is wrong with it. I hope you feel better soon.
Any responses??
I am in a LOT of pain again... and today I got nauseated suddenly while in the car... but went away in about 10 mins....